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2015-2017 Huffington Post Contributions
WendyKramer,Co-FounderandDirectoroftheDonorSiblingRegistry
WendyKramerisCo-FounderandDirectoroftheDonorSiblingRegistry(DSR).The(DSR)wasfoundedin2000byWendyandhersonRyantoassistindividualsconceivedasaresultofsperm,eggorembryodonationthatareseekingtomakemutuallydesiredcontactwithotherswithwhomtheysharegeneticties.Withalmost60,000members,theDSRhashelpedtoconnect16,000ofthosewiththeirhalfsiblingsand/ortheirspermoreggdonors.(2018)
Asacharityorganizationwithoutoutsidesupport,Wendy,Ryan,andtheDSRhavepioneeredanationaldiscussionaboutthedonorconceptionindustryandfamilies,withresearch,speakingengagements,media
appearancesandinterviews.Besidesunitingrelatives,theDSRinforms,counselsandsupportsdonors,offspringandparents.TheDSRisalsoactivelyinvolvedinresearchregardinggametedonationoutcomes.Viaoutreachactivitiesandthroughthemedia,theDSReducatesmedicalprofessionalsandthepublicaboutissuesrelevanttoallfamiliesaffectedbydonorconception.
WendyhasbeenapeerreviewerforthejournalsHumanReproductionandRBMOnline.WendyandhersonRyanhaveappearedon60Minutes,TheOprahWinfreyShow,GoodMorningAmerica,TheTodayShow,NBC.com,ABCNews,CBSNews,CNN,NPR,andmanyothernewsshowsanddocumentaries.ShewasAssociateProducerofthe2011EmmyNominatedSpermDonor,aStyleNetworkTVshow,andMTV's20136-partdocu-seriesGenerationCryo.Wendyisco-authorofFindingourFamilies:AFirst-of-its-kindBookforDonorConceivedPeopleandTheirFamilies(Penguin).PublicationsincludetheNYTimes,theLATimes,theLondonTimes,theChicagoTribune,OMagazine,MOREMagazine,andhundredsofotherpublicationsaroundtheworld.
HuffingtonPostcloseddowntheircontributorplatformin2018.HereareWendy’sHuffingtonPostcontributionsfrom2015-2017thataddressmanyimportantissuesthataffectdonorfamiliesaroundtheworld.
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Contents DonorConception:Oldvs.NewThinking................................................................................................................................................3ChoosingaSpermBank...WhattoKnow..................................................................................................................................................5Sperm/EggDonation:Genetics&MentalIllness.....................................................................................................................................7HalfSiblingsfromSpermandEggDonation...........................................................................................................................................10Sperm&EggDonation:TellingistheFirstStep.....................................................................................................................................13OneWeekOfNewsAbouttheSpermDonationIndustry......................................................................................................................15FDACitizen’sPetition:TheNeedForSpermBankRegulation...............................................................................................................16SpermandEggDonation:10ThingsYourDoctor,Clinic,orSpermBankWon’tTellYou......................................................................17FINDINGOURPEOPLE:WendyandRyanKramer’sStory......................................................................................................................19TheAmbiguityof“Open”SpermDonation............................................................................................................................................20NoLawsProhibitDonorRecipientsfromReachingOuttoDonors........................................................................................................23“DonorBabies”areSometimesGrandparents!.....................................................................................................................................25AMulti-Billion$$UnregulatedIndustryWithNoOversight.WhatCouldPossiblyGoWrong?............................................................27ABriefHistoryofDonorConception......................................................................................................................................................29TheDonorSiblingRegistryReaches50,000Members!.........................................................................................................................33SpermDonationNeedsFederalRegulation...........................................................................................................................................34EggDonation:ReportingDiscrepancies&MedicalIssues.....................................................................................................................36THINKINGABOUTSELLINGYOURSPERMOREGGS?.............................................................................................................................38DonorConceivedPeopleSearching–OneCentralRegistry..................................................................................................................40AnOpenInvitationtoAllSpermBanks..................................................................................................................................................42DNA=DonorsNotAnonymous..............................................................................................................................................................44NBCStory:48DonorSiblingsandtheASRM..........................................................................................................................................46BiologyandBirthCertificates:OurRighttoAccuracy............................................................................................................................47DonorFamiliesConnecting:LoveorFear?.............................................................................................................................................5130k-60kUSSpermandEggDonorBirthsPerYear?...............................................................................................................................53GrandparentsviaDonorConception.....................................................................................................................................................55DonorConceivedPeopleandtheReproductiveMedicineIndustryDisconnect...................................................................................58TheVotingBoothofSpermandEggDonorAnonymity.........................................................................................................................61SpermDonorsWhoWishtoRemainAnonymousJustShouldn'tDonate.............................................................................................64RootsandWingsforDonorOffspring....................................................................................................................................................66TheEthicalSpermBank:AnAll-OpenSpermBank.AnIdeaWhoseTimeHasCome............................................................................67FINDINGOURPEOPLE:WendyandRyanKramer’sStorybyEllenGlazer..............................................................................................70
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Donor Conception: Old vs. New Thinking
11/08/2017
Oldthinking:Infertilityissomethingtobeashamedof.
Newthinking:Comingtotermswithinfertilityisaprocess.Withpropereducationandcounseling,healingcanbeginsothattheshameofinfertilityisn’tpassedalongtothechildastheshameofbeingdonorconceived.
Oldthinking:Keepthesecret.Don’ttellanyonethatyouusedadonor,especiallyyourchild.
Newthinking:Secrecyimpliesshame.Opennessandhonestyarethebestchoicesforallfamiliesandyourchildhastherighttoknowabouthowtheywereconceived.Donorchildrendonotlovetheirnon-biomomordadanyless,sothisissomethingthatshouldn’tbefeared.
Oldthinking:Waituntilthechildis“oldenough”tounderstanddonorconceptionbeforetellingthemtheyaredonorconceived.
Newthinking:Researchshowsthatstartingtheconversationlongbeforeachildcanfullyunderstandisbest.Thatway,theinformationisincorporatedintoachild’sidentity,andthereisneverany“telling”event.
Oldthinking:Waituntilachildis“oldenough”oruntiltheyaskbeforetellingthemabouthalfsiblings.
Newthinking:Wedon’twaittotellchildrenaboutanyotherrelatives,sowhywaittotellthemabouthalfsiblings?Whynotgiveachildtheopportunitytogrowupknowingtheirhalfbrothersandsisters?Whyriskachildaskinglateron,“YoumeanIcouldhavegrownupknowingmyhalfsiblings?Whydidn’tyouallowthat?”
Oldthinking:Ifyourdonorconceivedchildfindsoutthetruth,askthemtokeepthesecret.
Newthinking:Itisnothealthyorfairtoaskyourchildtokeepthisinformationasasecret.Secrecyimpliesshame.Beingdonorconceivedisapartoftheiridentityandneedstobeacknowledgedandembraced.Ifthechildisstrugglingwiththisnewinformation,it’saparent’sresponsibilitytowalkwiththemandsupportthem.Parents:youcanapologizeforkeepingthesecret.Thisisnolongeraboutyou.
Oldthinking:Donorscanandshouldremainanonymous,for18years(“open”donors)orforever(“anonymous”donors):
Newthinking:DNA=DonorsNotAnonymous.WithDNA(andtheInternet,socialmedia,publicrecords,etc.)donoranonymityceasestoexist.Manyeggclinics/agenciesarenowwritingtheDonorSiblingRegistryintotheircontractssothatcontactbetweenparentsanddonorsismaderightfrompregnancyorbirth.Whydon’tspermbanksdothesame?
Oldthinking:Donorconceivedpeopleshouldbekeptfromtheirbiologicalparentsforatleast18years,aswith“open”or“willing-to-be-known”donors:
Newthinking:Itcanbeextremelyimportantforbothmedicalandpsychosocialreasonsfordonoroffspringtoconnectwiththeirbiologicalparents,longbeforetheageof18.Parents:thechoicesthatyoumakeearlyonwillaffectyourchildfordecadestocome.
Oldthinking:Ifdonorsareanythingbut“anonymous”theywillhaverightsandresponsibilitiesfortheirdonoroffspring.
Newthinking:Donorswhodonatethroughclinicsandspermbankshavenolegalrightsorresponsibilities.
Oldthinking:Donorsshouldn’ttelltheirspousesorchildrenthattheyweredonors.
Newthinking:Donorsshouldbetellinganyonethattheyareinaseriousrelationshipwiththattheyhavesoldtheireggsorsperm.Donor’schildrenshouldbetoldthatthey(might)have(many)halfsiblings,astheytoomightwanttoconnect.Again,secrecyimpliesshame.Ownitandshareit.Yourfamilyhastherighttoknow.
Oldthinking:DNAdoesn’tmakeafamily.
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Newthinking:DNAiscertainlynottheonlywaytomakeafamily,butitcananddoesdefinefamily.Aswithadoption,manydonor-conceivedpeoplewishtoconnectwithandlearnabouttheirancestry,medicalhistory,andfirst-degreegeneticrelatives.Thereisnoneedforaparenttominimizetheimportanceoftheirchild’s“other”geneticrelatives.Forparents,itmightbenothingmorethana“donatedcell”,buttoadonorchilditcanmeansomuchmore.
“Youcan’treallyknowwhoyouareandwhereyou’regoingunlessyouknowwhereyoucomefrom.”-BruceSpringsteen
Oldthinking:Donorsshouldn’thaveanyobligationtoupdatetheirmedicalrecords.
Newthinking:Updatingandsharingofmedicalinformationiscrucialandcanevensavelives.Parents
shouldknowaboutallmedicalissuesreportedbyfamiliesanddonors,bothbeforeandafterpregnancy.
Oldthinking:Thereisnoneedforaccuraterecordkeepingonthechildrenbornfromgametedonations.
Newthinking:Thereisadireneedforaccuraterecordkeepingsothatgroupsofhalfsiblingsof50,100,or200stophappening.Youcan’tnotifyfamiliesofreportedmedicalissuesifyoudon’tknowwhotheyare.
Oldthinking:Itismoreimportanttoputprofitbeforeethicsinthereproductivemedicineindustry.
Newthinking:Theneedsandrightsofthechildshouldbeconsideredfirstandforemost.
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Choosing a Sperm Bank...What to Know
Anopenlettertoanyonechoosingaspermbank
08/24/2017
HelloFutureParents,
Iamsogladthatyou’rereadingthis,andthatyouaredoingyourduediligence.AndIknow,thiscanseemcompletelyoverwhelming-hanginthere!Honestly,rightnowthereisonlyonespermbankthatIcanrecommend,andthatisTheSpermBankofCalifornia(TSBC).Maybeit’sbecausetheyareanon-profit,theydoseemtotryabithardertokeepaccuraterecordsandtoactinamoreresponsibleandethicalmanner.Theyarenotperfect,butdoseemtotryhardertocontactdonorswhenachildturns18,notjustsendagenericletterinthemail,assomebanks,likeCaliforniaCryobankhavedone.Ornotresponding,orclaimingthatdonorsarenotreally“open”atall,assomebanksdo.TSBC’s“informedconsent”form(onourWhichSpermBankpage)thatyou’dneedtosign,impliesthatyouoryourchildshouldn’tcontactdonorsorhalfsiblingsoutsidethescopeoftheirmutualconsent/age18recommendations,butthisisunenforceableasanyonecancontactanyone,atanytime-and,yourchildisnotsigningoragreeingtoanything.
Wethinkthat18isanarbitrarynumber,onlyinplacetoprotectthespermbank’sliabilities.That’swhyanyfamilycanmakecontactatanytimeontheDonorSiblingRegistry(DSR).(Childrenunder18doneedtheirparent’spermission).Thereisnopsycho-socialresearchthatrecommendswaitinguntilage18,andalotofresearchandthatdoesshowthebenefitsofconnectingearlyoninachild’slife.Ifachildcould
havetheopportunitytogrowupknowingtheirfirst-degreegeneticrelatives,thenwhydeliberatelykeepthemfromhim/her?
ManyeggclinicsandagenciesarenowwritingtheDSRintotheirparent-donorcontracts,soanonymous(ifwished)contactismadeontheDSRrightfrompregnancy/birth.Messages,photosandmedicalinformationcanthenbesharedfreely.Parentsanddonorsareempoweredtodecideexactlywhattypeofcommunicationtheyareinterestedin,withouttheneedofamiddlemanwhoknowsnothingaboutthemortheirfamily,ortheneedsoftheirchild.Notonespermbankwilldothis.Askyourpotentialspermbank“whynot?”
Somespermbanks“claim”tolimitnumbersofchildren,butthetruthis...youcan’tlimituntilyouactuallyhaveaccuraterecords,whichnonedo,asreportingbirthsisvoluntary.Somespermbankshaveestimatedthatonly20-40%ofwomenactuallyreportbacktheirbirthsbacktothespermbanks.TheDSRhasmanyhalfsiblinggroupsofmorethan100.XytexandFairfaxarethetwospermbankswiththemostnumberofverylargehalfsiblinggroups.
Becauseoflittleregulationoroversight,besidestheFDAmandatedSTDtesting,andtestingforasmallhandfulofotherdiseases,eachbankcansaywhatevertheywant,andthendowhatevertheywant.So,somebanks,testsomedonors,forsomediseases.YoucanreadallaboutthemedicalandgeneticissueshereontheDSR’sMedicalIssuespage.
SharingmedicalinformationwithhalfsiblingfamiliesanddonorsontheDSRisoftentimestheonlywaytoknowaboutthistypeofimportantmedicalinformation.Familiesshouldneverrelyonspermbankstocontactfamilieswhenmedicalissuesarise,asmostoftentheyareunaware,andevenwhentheyaremadeaware,weknowthattheyfrequentlydonotupdatethefamilies.
IwoulddefinitelysteerclearofthebigbankssuchasCaliforniaCryobank,Xytex,Fairfax/CLI/PacificReproductiveServices(PRS),NWCryobank,theUS“Scandinavian”spermbankslikeSeattle/EuropeanSpermBank/Cryos,orNewEnglandCryogenic(NECC).IusedCaliforniaCryobank,andcouldneverrecommendthem,asonmanyoccasionsIhaven’t
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foundthemtobehonest.SeetheJohnsonvs.CaliforniaCryobankcase(thespermbankdeletedPolycysticKidneyDiseasefromadonor’sprofile),thisOmagazineArticle,andmyBlogentryontheDSR.Atleasttwospermbanks,FairfaxandNECChavenotlettheirdonorsknowtheirowndonornumbers,tryingtoactuallyprohibitthesharingandupdatingofinformationbydonorswithfamiliesontheDSR.
ReadtheseNYTimesarticles:OneSpermDonor,150OffspringandInChoosingaSpermDonor,ARolloftheGeneticDice.Also,seethis(oneofmany)disturbingarticleaboutXytex.Readthis2016NYTimesarticle:SpermBanksAccusedofLosingSamplesandLyingAboutDonors.Andthere’salsothisoneregardinganNECClawsuitinvolvingachildbornwithCysticFibrosis.
ReadthroughtheusercommentsabouttheseandotherbanksonourWhichSpermBankpage.Askyourpotentialspermbankthe30questionswe’veprovidedonthatpage.Forthemostpart,thesespermbanksseemonlyresponsivetopeoplebeforetheyselltheirproduct.
Ihopethatyou’llbeusinganopendonor-pleasereadthroughthe25publishedpapersonourResearchpageandtheadvicethatdonorconceivedpeopleofferontheDSR’sOffspringpagetobetterunderstandwhyusinganopendonorisSOimportant.TheDSRhasspentmanyyearsresearching,listening,andrespondingtotheneedsandissuesofdonor-conceivedpeople,andweknowthattheydonotrecommendthatprospectiveparentsuseanonymousdonors.Rememberthough,thatwithoutofferingearlyconnections(liketheeggclinics/agenciesaredoing)allspermdonorsareessentiallyanonymous,albeitsomeonlyforthefirst18yearsofadonorconceivedperson’slife.
Also,Iwouldsuggestthataftermakingashortlistofpossibledonors,thatyouchecktheDSRtoseeifanyofthefamilieswhousedthosedonorsarealreadylistedonoursite.Ifso,youcouldreachouttothemtoseeifthereareanymedicalissuesthatyoushouldknowabout.Also,youcanseehowmanyfamiliesarealreadypostedforthatdonor.SharingandupdatingmedicalinformationontheDSRwithotherfamilies(andthedonor)canbeimportantandevenlife-saving.Wouldn’tyouwanttoknowifthedonoryou’rethinkingofusingalreadyhas30,50or200kidsoutthereandthattoomanyofthemhadautism,ADHD,oraheartdisease?
PleasereadALLthearticlesinmyHuffingtonPostBlog,astheycontainalotofinformationyouwon’tfindanywhereelse,forexample:“10ThingsyourDoctororSpermBankWon’tTellYou”.IhighlyrecommendreadingFindingOurFamilies:AFirst-Of-ItsKindBookforDonorConceivedPeopleandTheirFamilies,asit’severythingIwishIwouldhaveknownwhenIwasbeginningmyjourneyasaparentofadonorconceivedchild.
Wejustsubmitted(July2017)anFDACitizen’sPetitionwith173powerfulcomments,storiesandtestimonialsfromparents,donorsanddonorconceivedpeoplethatshouldbereadbyanyonewishingtolearnmoreaboutthereproductivemedicineindustry.
Bestwishesandgoodluck!
~Wendy
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Sperm/Egg Donation: Genetics & Mental Illness
03/29/2017
ThesetworecentcommentssubmittedtothetheDonorSiblingRegistry’sFDACitizen’sPetitionhighlighttheneedformorecomprehensivemedicaltestingofdonors,includingpsychologicalevaluations,theintakeofcompletefamilymedicalhistories,andcontinuedupdatingandsharingofmedicalinformationreportedbydonorsandfamilies.
MyFairfaxIDdonorcommittedsuicidein2013.Ilearnedofhisdeathoneweekafterthebirthofmysecondchildin2016.ThatmeansIposthumouslyconceivedoneorbothofmychildrenwithaFairfaxCryobankdonor.Ididnotconsenttothis,andIdonotknowifthedonorwouldhaveconsentedtothis.Whenweweremakingthecriticaldecisiononwhowouldbebiologicalfatherofourchildren,wespecificallyrequiredtwothings:1)thedonorhadtobean“IDoption”donorsothatourchildrenwouldhavetheaccesstolearnasmuch,oraslittle,abouttheirbiologicalfatherastheydesire;and2)thedonorhavenohistoryofmentalillness.InthetwosentenceinformalletterIreceivedin2016,Fairfaxadvisedmethatthedonorcommittedsuicidein2013.Fairfaxsaidtheylastgotamedicalupdateonthedonorin2013andnomentalillnesswasreportedor“notedbyanystaffmember”.AsaresultofFairfax’slackofaction,mychildrenhavenotonlylosttheirrighttoseekouttheirdonoratage18,buttheyalsomayormaynothaveinheritedapredispositiontosuicide.Fairfaxstillhasthisdonor
listedontheirwebsiteas“inactive”-withnoindicationwhatsoeverthatheisdead.Thisisunconscionable.TheFDAneedstostepinandregulatethisindustryonafederallevel.
Iamadonoroffspring(1953).Mybiofatherturnedouttobemymother’sveryownphysician.Shewasassuredthatitwouldbearesidentfromthehospital,butheconfessedtoherlater,whensheaskedhimaboutthecolorofmyeyes.Theylookedlikehis.Hediedattheageof41,veryyoung.IwastoldabouthimwhenIwasinmyearlyteens,andshegavemeacopyofhisobituaryandaphotograph.Mysonwas16whenheendedhislife.Ihavebattleddepressionforyears.Idecidedtoresearchmypaternalsideandwasshockedbymyfindings.BothofmypaternalgrandparentsdiedinapsychiatrichospitalinIowa.Isentforcopiesofthemedicalrecordsandfoundthatmygrandfathersufferedwithpsychosisandmygrandmotherlivedoutherlifeinacatatonicstate.Mybiofatherhadason,whoendedhislifebyanoverdose,whenhewasinhisearly30’s.Mybiofatherhadonebrotherandthreeofhischildrenendedtheirlives.Onedrovehercaroveracliffandtheothertwooverdosedonprescriptionmedication.Ifoundahistoryofdepression,schizophreniaandbipolardisorderinthefamily.Iwentbackfurtherinthefamilytree,andthereIfoundselfinflictedgunshotwounds,overdoses,andoneeventookpoison.Mypaternalgrandfatherwasreallyunbalanced.Hewasabigamistandmarriedtofourdifferentwomen(nodivorce)thathesimplywalkedawayfrom.Hewalkedawayfromhisfirsttwochildrenaswell.Thatisnotnormal.Ihavemanyserioushealthproblemsasaresultofthatdonor.Unfortunately,sodomychildren,andnowmyFouryearoldgrandsonisshowingsignsofadisorder.
FiveMajorMentalIllnessesTracedtoSameGeneticVariations
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Allmedicalupdatesshouldbeavailabletoallfamilieswhohavepurchasedthegametesofanyonedonor,andalldonorsshouldbeawareofchildrenbornwithanyhealthissues.
Bothnatureandnurturecontributetomanypsychologicalandmentaldisorders.Butmostdonorconceivedpeopleknowlittletonothingaboutthefamilyhistory,ortheongoingpsychologicalhealthoftheirunknowngeneticrelatives.Theselfreportedmedicalinformationthatdonorssubmitareonlyreflectiveofonedayinthelifeofahealthydonor,whatthatdonorwantstheclinictoknow,andcertainlynotwhathappensafterwards.Regularmedicalupdatesarenecessaryasmanymentalillnessesareadultonset,andsharingupdatedinformationamongrelatedfamiliesisimperative.Additionally,donorswithmentalillness/issuesorgroupsofhalfsiblingswithmentalillness/issuesshoulddeterspermbanksfromcontinuingtosellthatdonor’sgametes.
TheDonorSiblingRegistryhashighnumbersoflargehalfsiblinggroupsreportingchildrenwiththeseissues:
IhavehadatheoryforawhilethatthereisahigherincidenceofAsperger’samongdonors.IhaveheardfromquiteafewdonorswithAsperger’sandalsofromfamilieswhodiscoverthattheirdonorhasAsperger’soncetheyconnectontheDonorSiblingRegistry.ThesefamiliesoftentimeshavehalfsiblinggroupsthathavechildrenwithADHD,Asperger’s,Tourette’s,andwithkidssomewhereontheautismspectrum.36%ofour1700surveyedspermdonorrecipientsreport
childrenwiththeseissues,whilesomeAutismstudiesreportthat1in68peoplehaveautism.Veryinteresting!
MytheoryaboutdonorsisthatAsperger’smaysometimescontributetothat“disconnect”neededtodonatesperm:tonotbeconcernedabouthaving(many!)biologicalchildrenoutintheworldthatthey’llneverknow.Iknowalotofmenwhosaytheycouldneverdonateforthisreason,soIdothinkthereissomelevelofemotionaldisconnectneeded.Again,thisismyopinion/theory,andnotbackedupbyanyactualresearch.
Fromonedonor:
“I’madonorwhoprobablyhasAsperger’s,andI’mawarethatoneofmydonorchildrenexhibitsmanytraitsofAsperger’s,buthismotherhasn’tformallydiagnosedhim.MysonfrommymarriagealsoexhibitsAsperger’sandTourette’ssymptoms.?”?
Fromafewparents:
“Ihave3children,allfromthesamedonor.OneisPDD(HighFunctioning),theother2areADHD.InoursiblingsgroupthereareisapairofautistictwinsandoneotherPDDchild,andIthinkalsoatleast2ADHDs.”
”…wealsohaveahighrateofautismdiagnosedamongtheboysinthesiblinggroup(wehave60families)”.??Wehavemultipleoffspringwithtics(includingseveralwithTourette’s)andADD/ADHD.?”??
“Mydaughterhaspdd-nos,nonverballearningdisability,mooddisorder-nosandadhd.HerdoctorhasraisedthequestionifAsperger’s.Mydonor’sdaughterwithhiswifehasAspergers&adhd.Thedonorhadadhd&undiagnosedAspergers.?”?
“Ihadgenetictestingonmy2boysthatwereconceivedfromthesamedonor.Theyinheritedamutation.OnagenethatisknowntocauseautismandRhettsyndrome.Bothofmyboysareautistic.Oneoftheirdonorhalfsiblingswhoisalsoautisticjustreceivedgeneticresultsandshealsoinheritedthesamemutationinthesameexactspotinthehergenomeasbothmyboys.”
“InoticedonaFacebooksitethat3half-sibsallhadautism...Icheckedandthatdonor’sprofiledidnotincludethisupdate!Themothersreporteditbuttheclinicdecidednotto‘update’thedonor’sprofile
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causetheysaidtherewasnoproofthatautismisgenetic!”
“WeusedCaliforniaCryobank,andIactuallycalledthemafterourdaughterwasdiagnosedwithautismandanxietydisorder,justtoaskwhytheydidnot,andmaybetheyshould,askthesetypesofquestionsonthedonorshealthinfo.Thegeneticisttoldmethattheywouldn’ttakeaspecimenfromanautisticperson,thatthestaff“wouldhaveknownbymeetinghim”ifhehadASD.Ha!PeoplewithASDgotheirwholeliveswithoutbeingdiagnosed...youcannottellbyLOOKINGatsomeone!Iwassurprisedanddisappointedattheirlackofknowledgeonit.”
WhatYouNeedToKnowAboutTheGeneticsofMentalDisorders
Ifyouhaveastorytotell,anexpertopinion,orjustwanttheFDAtohearyourvoice,pleaseaddacommenttoourFDACitizen’sPetition:BecausetheFDAcurrentlymandatesonlyminimalmedicaltestingofspermandeggdonors(nootherregulationexists),werequestthatthecommissioneroftheFDAlookintothestateofaffairssurroundingthespermdonationindustry,andthendeveloptheappropriateandmuchneededregulation/oversight.
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Half Siblings from Sperm and Egg Donation
03/13/2017
Threehalfsistersmeet
Familycanbeformedanddefinedinsomanydifferentways,butbiologyhasalwaysbeenthemostcommonfamilybond.Ifbiologydidn’tmatter,we’dgivebirthtoourbabies,andthenjustpickanybabyfromthehospitalnurserytotakehome.Thatdoesn’thappen!Inmostcases,parentswanttotakehomeandraisethechildthattheyhaveageneticconnectionwith.
Havingabiologicalconnectiontoachild(tooneparent)matterstoparentswhousespermandeggdonors*.So,ifparentsvaluethisgeneticconnectionononesideofourchild’sfamilytree,shouldn’ttheyalsorecognizeandvalueitsimportanceontheotherside?AlltoooftenIhearparentsnegateorminimizetheimportanceoftheirchildconnectingwiththeirunknownbiologicalparent(thedonor)andtheirhalfsiblings(peopleconceivedfromthesamedonor).Somerefertothedonor’scontributionasmerely“a
pieceofgeneticmaterial”orjusta“donatedcell”.Buttomanydonorconceivedpeople,it’ssomuchmore.
Donoroffspringdesiretoknowabouttheirgeneticrelatives.
GeneticuncertaintyhascloudedmylifesinceIwas12yearsold,whenIlearnedthatmyconceptionwasfacilitatedbyananonymousspermdonor.Thoughtheshockdissolvedinthefollowingmonths,I’mremindedofthisobscurityentwinedinmyDNAwhenI’maskedtofilloutamedicalhistoryformatthedoctor’sofficeandhavetoindicatethat,geneticallyspeaking,halfofmyfamilytreeremainsinshadow.I’mjoiningtheDonorSiblingRegistryinthehopeofconnectingwithotherswhohavehadsimilarexperiences,hearingstories,andmaybeevenfindingabiologicalhalf-siblingorrelative.
Evenchildrenofdonorscanbecuriousabouttheirhalfsiblings.
Weoftentalkabouttheimportanceofhonestyindonorfamilies,andhonoringachild’scuriosityabouttheirfirst-degreegeneticrelatives.Dodonorsalsoowetheirownchildrenthetruthabouttheirdonating?Dothedonor’schildrenhavearighttoknowthatthey(may)havehalfsiblings?DNAtestingisalreadyrevealingthesesfamilyconnections,anditwillonlycontinuetobecomemorecommon.Myguessisthatmostdonorsdonotinformtheirfamilies,assomeareashamed,somedon’tconsiderdonorchildrenastrue“family”,someareafraidof100kidscomingforward,andsomehavespousesverymuchagainstit.IshouldnotethatwedohaveafewthousanddonorsontheDSRwhoareopentocontact(withsomewonderfulresultingstories),andwedohearaboutpositivedonor-offspringconnectionsalsomadethroughDNA.
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IrecentlyfoundoutthatmyfatherdonatedtospermbanksmanytimesyearsagoandIwonderedifIhaveanymoresiblingsoutthere.
Whynotgivechildrentheopportunitytogrowupknowingtheirhalfsiblings?
Ourkidsaretwoandhalfyearsold.Theyareonly3weeksapartinage.Theyaresoalikeandtheyaresodifferent.Theyspent4daystogether,fightingandplayingandthenfightingsomemore.Withinourindividualfamiliestheywereonlychildren.Inournewfamilytheyareverymuchsisterandbrother.Therearen’twordstoexplainthesenseofpeacethathasgivenusasparents.There’snoyardstickthatcanmeasurehowmuchthishasenrichedourlives.
Someparentswhohaveseentheirchildren’shalfsiblingspostedontheDonorSiblingRegistry(DSR)havesaidthattheywillwaittoestablishcontactwiththehalfsiblingsuntiltheirchildisoldenoughtomakethatspecificrequest.Generally,childrendon’tdecidewhentomeettheirrelatives.(Theyalsodon’tdecidethetimingofalotofthings!)Wedon’twaituntiltheyshowinterestorasktomeetAuntShirley,CousinFrank,orGrandpaLarrytomaketheintroduction.Ourchildrengrowupknowingtheirrelatives,andthen,whentheyareolder,theychoosewhotheywishtobeincontactwith.
Justimaginebeing20somethingandfindingsiblingsonyourownwhenDNAtestingisevenmorewildlypopular,ortheyfindyou.Youthendevelopsomekindofrelationship.Youfindthatmanyofthesesiblingshadparentswhoencouragedtheserelationships,evenfrombabyhood.Youseethepictures,youhearthestories.Disney,camping,birthdays...Acoupleofthemwillberoomiesincollege,maidofhonorinasiblingwedding,etc.Tome,thiswouldbecrushing.Iwouldfeelsocheated.WhetherornotIhadgreatneighborpals,awesomecousins,orevensiblingsfromthesamehome.
Wechoseearlycontactwithhalfsiblingsbecausewefeltifhewantedtoendcontactwhenhewasoldenoughtochoose,hecould.Butifwewaiteduntilhewasolder,andtoldhimweknewhishalfsiblingsallalong,andhewishedforthatcontact,therewouldbealotofyearsandmissedopportunitiesgone.Wefeelbeingopen,honest,andhavingconnectedearlyonmayinstillasenseofprideandwardoffanyshamethatmaycomeaboutifweweresecretiveaboutthispartofhisstoryandfamily.Wealsohave
asonwhowasadoptedatbirthsowearebigoncelebratingandembracingthewaysinwhichourfamilycametobe.
ConnectingontheDSRmaybetheonlywaytoshare/updateimportantmedicalinformationwithotherfamilies.
Formost,connectingwithhalfsiblingsontheDSRhasbeenanoverwhelminglypositiveexperience:
Ijustfoundmyhalf-siblingthisyear.Iam29yearsoldandwishthatIcouldhaveknownhimmywholelife.Itisreallyspecial,andI’msothankfultohavefoundhim.Wemetacoupleofmonthsagoandit’slikewehaveknowneachotherallalong.
Ithinkit’sreallycoolthatIhavesiblings(I’mclosetothreesistersandonebrother).WegetclosereveryyearbecauseweFaceTime,text,andgettogetherinthesummertime;eversinceIwasthree.MysistersandIarenowteamingupagainstourbrother.Andit’sfunpickingonhim.Welivethousandsofmilesapart,yetitfeelslikewealllivetogether.We’retalkingaboutgoingtocollegeinthesametown.
Twins(oneitherend)meethalfsiblingsforthefirsttime
You’renevertoooldtofindhalfsiblings.
WhenIsignedupwiththeDSRayearago,Ididitmorewiththehopesoffindinginformationaboutmydonor,thanwithanythoughtsofactuallyfindingasibling.Afterall,I’dbeconceivedinthelatesixties,
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wellbeforetheexistenceofspermbankswithregistereddonors.Atthattimeeverythingwasverysecretive,withabsolutelynoinformationgiventotheparents.WhenIgottotheDSR,Iwasthefirstpersontocreatealistingundermymom’sdoctor’sname,fromNewYorkCity.Abouteightmonthslater,awomanemailedmetosaythathermotherhadusedthesamedoctorasmine,justtwoyearslater.Wefiguredwecouldbandtogethertofindoutasmuchinfoaswecouldabouthowthedoctor(nowlongdeceased)hadgoneaboutfindingdonors.Afterafewmonthsofresearch,wewereabletopiecetogetherthatthepoolofdonorsheusedwasactuallyverysmall.Ithonestlyhadn’toccurredtousbeforethatwecouldbesiblings,butoncewelearnedaboutthesmalldonorpool,wefiguredwhynotgiveitashot.Sowefoundthemostreliableandthoroughtestingfacility,anddidahalf-siblingDNAtest.Loandbehold,itcamebackwith99.7%certaintythatweweresisters!Soforalltheolderdonoroffspringouttherewhohaveonlyfragmentsofthestoryoftheirconception,don’tgiveuphope.
Andfinally,ofcoursetherearenoguaranteesthatallfamilyconnectionswillbeentirelypositive.
SomepeoplearesuspiciouswhentheylookatthesuccessstoriesontheDSR,andhaveasked,“howcan
theseconnectionsallbesopositive?”WhilethegreatmajorityofnewfamilyconnectionsontheDSRareindeedverypositive,somemightbemoreflatorsometimesevenmoreofastruggle.Ourfamiliesaremadeupfromallraces,religions/non-believers,academicbackgrounds,genderidentities,sexualorientations,abilities,socio-economicbackgrounds,politicalperspectives,nationalitiesandvariedpersonalitytypes.
Allfamilieshaveissues.Notallpeoplearelike-minded,orhaveenoughincommontowishforcontinuedrelationship,andsometimespeopledon’tagreeonthedesiredlevelordegreeofcontact.WhenwelookaroundourThanksgivingtable,dowewanttohangoutwitheveryonethere?Sometimesnot!Somefamilymembersarejustnotthekindofpeopleyou’dwanttohangoutwith,andsomemayjustbepeoplewithwhomwedon’thaveenoughincommon.Arethesereasonstonotseekoutyour(oryourchild’s)unknowngeneticrelatives?Wethinknot!
*Peoplewhoselltheirspermandeggsarecommonlyknownas“donors”,althoughmostdon’tactuallydonateanything.
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Sperm & Egg Donation: Telling is the First Step
03/10/2017
In2000whenmysonandIstartedtheDonorSiblingRegistry(DSR)(initiallyasaYahoochatdiscussiongroup),thepredominantconversationwasaboutdisclosure.Backthenmany,mostlystraight,parentswereinvestedinkeepingthesecret,andcamefromthepointofviewthatasaparent,disclosurewastheirpersonalchoicetomakefortheirfamily.Theydidnotliketohearaboutwhynottelling(lying)mightbeharmfultooffspringandunhealthyfortheirfamily.Theydidn’twanttohearthatsecrecyimpliedshame.
“Secretsarelikelandminesyouknow.Theycangooffatanytime,butuntiltheygooffyou’resortoftreadingaroundthem.”-DonorConceivedPerson,BarryStevens
Somefeltattackedandoffendedwhenoffspringorotherparentsgavereasonsastowhylyingtotheirchildwasnotright.Theystucktotheirguns,evenwhentheyheardfromoffspringwhoreportedfeelingliketheirworldhadbeenturnedupsidedown,whentheydiscoveredthetruthlateroninlife.Theseparentsinsistedthattheywerenottellingtheirchildrenbecauseitwould“hurtthechild”toknowthetruth.Theydidn’twanttohearthatnon-disclosurewasmoreabouttheirown(ortheirpartner’s)shameandfearandnotatallaboutwhatwasinthebestinterestsofthechild.
Whyshouldaparent’srighttosecrecytrumpachild’srighttothetruth?Healthyrelationshipsarebuiltonfoundationsoftrustandhonesty.Weexpecthonestyfromourchildren,shouldn’ttheyexpectthesamefromus?
Thisconversationisnotanewone.Honestyhaslongbeenanacceptedpracticewithinadoptivefamilies,whileatthesametime,spermbanksandeggclinicswere(hopefullynolonger)advisingparentsto“keepthesecret”.Therewasneveranypsychologicalresearchtobackthisup,soweknowthattheadvicehadnopsychologicalfoundationandnomerit.Itonlyservedtokeeptheindustry’sdirtysecretssecret.Italsoservedtoprotecttheinfertilenon-biomomordad,anditperpetuatedtheshameofinfertility.Itcreatedsomanyparentswithshouldersheavyfromcarryingadeepdarksecretfordecades.Thisiswhywestronglyrecommendinfertilitycounseling(beforepregnancy)fornon-biomomsanddads.It’simportantthattheyworkthroughtheirowngriefaboutbeinginfertilesoasnottopassalongthatgrief,intheformofshame,totheirchildren.
Manyoftheparentswhochoseto“keepthesecret”leftourgroup.SomehavejoinedtheDSRinsecret,connectingwithotherfamiliesonlytotellthemthattheyhavenointentionoftellingtheirchildren.Ican’thelpbutwonderhowthesefamilieshavefared,if/whenthesecretcameout,howthechildrenreacted,andhowlongtheyallhavebeforeDNArevealsthetruthtoeveryone.
Tellingisjustthebeginningthough.Justbecauseachildknowsthattheywereconceivedwiththehelpofadonor,doesn’tmeantheywillhavepeacewithnot
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knowingaboutonehalfoftheiridentity,medicalbackgroundandcloserelatives.Theconversationsontheheelsofdisclosureareextremelyimportant.Theyshouldacknowledge,honor,andvalidateanycuriositythatdonoroffspringhaveabouttheirunknownfirstdegreegeneticrelatives.Theyshouldsupportanydesirethatadonoroffspringhastosearchfor,andtoconnectwiththeserelatives.Theconversationsshouldbeongoingandaffirming.Tellingisonlythefirststeptocreatinghealthyandhappydonorfamilies.
Ifyouneedhelpinsupportingyourdonorconceivedchild,includingdecidingwhenandhowtotellyourchild,readthroughourDSRCounselingPage.Formoreindepthadvice(fromallofthestakeholders:offspring,parentsanddonors),readFindingOurFamilies:AFirst-of-Its-KindBookForDonorConceivedPeopleandTheirFamilies.
SomeotherissuesaddressedonourCounselingPage:
Howtomoveforwardinconnectingwithadonororahalf-siblingfamily(ormanyfamilies).
Non-biologicalparentsfeelinguncomfortableabouttheirchildrenreachingouttobiologicalrelatives.
Howtocopewhenyouhaveaburningdesiretoknowyourgenetic/ancestralhistory,bothwithandwithoutparentalsupport.
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One Week Of News About the Sperm Donation Industry
02/10/2017
WISCTV:Womanhopesformoreregulation,protectionfordonor-conceivedpeople
“I’mnotlookingforanewDad.IhaveaDad,”shesaid.“He’sthebestDadIcouldeveraskfor.I’mjustlookingforapartofmyselfandI’msuretherearelotsofpeopleouttheredoingthesame.”“Ifeellikeeverybodyhasarighttoknowwheretheycomefrom,”shesaid.“Ifhewassick,ifhewascarryingageneticdisease,IfeellikeIshouldknowaboutthat.Otherwise,it’slikeacrapshoot.WhatcouldIhavethatI’dpassontomykids?Ihavenoidea.”
NBCDenver:Motherworriesaboutspermdonor’smedicalhistoryAstoryaboutamotherwhousedspermfromCaliforniaCryobank.
Therealityofconceivingwithananonymousdonorhitherwhenshelearnedtheboyswerespeechdelayed.Whentheyturnedsix,Jaydenwasdiagnosedwithcancer.“Allofthesedoctors,includingthepediatrician,wouldaskmeabouttheirgenes,abouttheirfamilyhistory,”shesaid.TheinformationLynnettedidhavewaslimited.Amedicalhistoryquestionnairewithwasvirtuallyblank.Thedonorclaimedneitherhe,noranyofhisclosefamily,sufferedanythingonthislonglistofillnesses.Eventothequestion“anyotherconditionnotlistedabove”hesaid“no.”
NBCAtlanta:SpermForSale,FightingForChangeAstoryaboutamotherwhousedXytexCryobank.
Max’sbiologicalfatherwasconvictedofburglaryanddiagnosedwithbipolarschizophrenia,whichhasabouta10%chanceofbeinginheritedbyhisoffspring.Andit’sbelievedhehasmanyoffspring.Accordingtocourtrecordsandemails,thedonorhasatleast36children,scatteredin5statesand3countries.
That’swhyinJanuary,Kramerfiledacitizen’spetitionwiththeFDAbeggingforchange.TheFDAistakingcommentsfromthepublicasitdecideswhetherthisisaseriousenoughissuewithcommunityorindustrysupporttoinvestigate.Severalparentswhohavealreadycommentedsaytheytoofound“inconsistentinformation”intheirdonorprofiles.OnemedicalprofessionaltoldtheFDA“puppybreedingismoreregulated.”Outofinterest,11Alivecheckedtherequirementsforpuppybreeders.Bothmustbelicensediftheywanttohaveacertainsalesvolume.Bothareinspectedwithafocusonsafetyandcleanliness.Thedifferenceseemstocomeinthefactdogownerswanttobragandareopenabouttheirpuppy’slineagesoclaimsofparentageareoftenbettertracked.Ifyouaretoldcontractuallyyouarebuyingapurebredandlaterfindoutthat’snotthecase,youhavestrongcaseincourt.
WRDW12News:BothliquidnitrogentankswereneverpermittedforuseatXytex,firemarshalsays
ApoliceofficerinGeorgiadiedafterinhalingafatalamountofliquidnitrogenwhiletryingtorescueaworkeratXytexCryobank.
InvestigatorssayonedeputyhasdiedafterinhalinganunknownchemicalsubstanceatXytexCorporationinAugusta.TheStateFireCommissionerhasissuedceaseanddesistorderstocompanyinvolvedindeadlyliquidnitrogenleak.TheorderswereissuedtoXytexCorpTuesdaymorning.TheorderstatestheAirgasLiquidNitrogentankwasutilizedwithoutaninstallationpermitinspection,accordingtoGlennAllenwiththeOfficeofInsuranceandSafetyFireCommissioner.ItturnsoutXytexdidnothaveapermitinspectiontostartusingtheAirgastank.Now,theStateDepartmentofInsuranceiscitingthemandtheNitrogentankmaker,Airgas.Theyarenotallowedtousethetanksuntiltheycorrectthesystemandthecommissionerre-inspectsit.XytexandAirgasgottwocitations.
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FDA Citizen’s Petition: The Need For Sperm Bank Regulation
Wejustfileda“Citizen’sPetition”totheFDA,andit’snowavailableforpeopletoaddcomments.Please,addyourcomments,asthemoreweget,thebetterourchancesofaccomplishingsomething(anything….evenafurtherconversationwiththeFDAwouldbeconsideredsuccess).https://www.regulations.gov/docket?D=FDA-2017-P-0052
“BecausetheFDAcurrentlymandatesminimalmedicaltestingofspermandeggdonors(nootherregulationexists),werequestthatthecommissioneroftheFDAlookintothestateofaffairssurroundingthespermdonationindustry,andthendeveloptheappropriateandmuchneededregulation/oversight.”
FrommyFDAcontact:
“GoodMorningWendy,I’veattachedyouracknowledgementreceiptforthepetition.ItsdocketnumberisofficiallyFDA-2017-P-0052.Youmayvieworcommentonthepetitionthroughwww.regulations.govhereisthelinktoyourpetition:https://www.regulations.gov/searchResults…IhavesentthepetitiontotheFDA’sCenterforBiologicsEvaluationandResearch(CBER).Perregulationthecenterhas180daystorespondtoyouaboutthispetition.Thatresponsemaybeadecisionoraninterimresponse.Wewon’tlikelyreceiveanupdatebeforethattimeunlessthecenterhasquestionsforyou.Inthatcase,theywillcontactyoudirectly.”
Afewinitialpubliccomments:
“Ourcryobankhasbeenunableorunwillingtolocateour“identityrelease”donorfor6monthsnow,despiteallrequirements/paperworkbeinginorder,anddoesnotreturnphonecallsoremailsregardingthestatusofourrequesttocontactthedonor.However,withDNAtestingwewereabletolocatethedonorourselves,onlytolearnthatsomeoftheoriginalinformationwewereprovidedbythecryobankwasincorrect,includingidentityreleasestatus,ethnicity/religion,collegeinformation,SATscores,andcertainhealthinformation.Thisindustryneedstoberegulatedsothatdonorinformationisfactuallycorrectandthatthecryobanksarebeingforthrightandhonestintheirdealingswithclients.”
“TheUnitedStatesisoneoftheonlydevelopedcountriesonearththatislackingcrucialregulationandoversightoftheartificialreproductionindustry.Thereisampleresearchsupportingthenegativeeffectsthatthislackofregulationcontinuestocause.TheFDAhasaresponsibilitytoputcommonsenseregulationsinplacetoensurethesafeandethicalcreationofhumanlivesbydonorconception.”
“Istronglysupportadditionalreviewofthedonorgameteindustry.IbelievetheFDAshouldengageinfurtherinvestigationofthebusinessofegg,sperm,andembryodonationasabasisfordevelopingfurtherregulationandoversight.Asanacademicwhohasstudiedandwrittenarticlesandbooksaboutthefertilityindustry,Istronglyurgeyoutoundertakeadditionalreview.Thankyou.?”
”Ireportedtothespermbankthatmychildwasdiagnosedwithcancer(lymphoma/leukemia)thesameweekofhisdiagnosisandprovidedproof,sotheycouldreportitbacktothedonorandtotheotherfamilieswhohadusedthesamedonor.Almosttwoyearslater,noneofthe11familiesIamincontactwithhavebeennotifiedaboutmyson’scondition.”
AndIalsosubmittedacomment:
HereissomerecentinputfromfamilieswhousedCaliforniaCryobank(fromtheDonorSiblingRegistrySecretFacebookpage,January2017).Thisinformationillustratesthedishonestmannerinwhichspermbanks(CaliforniaCryobankisnotuniqueinthisrespect)disseminateinformationaboutlimitsonnumbersofoffspringforanyonespermdonor:
“Theytoldmein2011itwaslimitedto20familyunitsbuttheyarenowsayingithasincreasedtobetween25and30familyunits.”“In2011CCBalsotoldmethattheylimitfamiliesofopeniddonorsto20andanonymousdonorsto25.““Backin2004Iwastoldthateachdonorhad10vialsandthatwasit.““WhenIusedCCBin1999theytoldmelimitedto30families-asofrightnowthereare30kids.““Inabout1990theytoldmeten.Iguessitjust
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dependsonwhoanswersthephone!”“In1991theysaid1or2birthswasthelimit.”“In2005weweretoldthelimitperdonorwastenfamilies.““In2010,whenwechoseourCCBdonor,weweretold10familiesmax.”
Note:WhenaprospectivedonorcalledCCBlastsummerandaskedthisquestion:“Whatisthemaximumnumberofchildrenthatyouallowperdonor?CaliforniaCryobanktoldtheprospectivedonor,“12to15familyunits.”
Sperm and Egg Donation: 10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You
1. Mostdonors*andrecipientsarenotproperlyeducated,counseled,orinformedbeforehandabouttheneedsandrightsofthechildrentheyarehelpingtocreate.Thisincludestheimportanceofconnectingwithfamiliestoshareandupdatemedicalinformation,andtheinnatedesireofdonorconceivedpeopletoknowabouttheirfirst-degreegeneticrelatives.
2. Thereisnocomprehensivemedicalandgenetictestingconductedbyclinicsandspermbanks.IntheUStheFDAonlymandatesforSTDtestingandforahandfulofotherdiseases.Somefacilitiestestsomedonorsforsomediseases.TestingforSTD’sdoesnothingtopreventtransmissionofgeneticillness.Propergenetictestingofalldonorsiscritical.HundredsofmedicalandgeneticissueshavebeenreportedtotheDonorSiblingRegistry,manyofthemhereditary.
3. ThereislittletonoregulationoroversightoftheUSreproductivemedicineindustry,whichshipsspermtoover40countriesaroundtheworld(sothisisaglobalissue).Thisindustryisnotrequiredtomaintainorupdaterecordsregardinggeneticdiseasetransmittedtodonoroffspring.Informationaboutinheritedphysiologicalandpsychologicalpredispositionsareasignificantelementinobtainingappropriatemedicalcare,particularlyinpreventativehealthcareincludingscreeningsandpreventativemedicine.Examples:geneticpredispositionforheartdisease,mentalillness,orCysticFibrosis.Adonor’smedicalprofileismerelyaself-reportedfamilyhealthhistory,alongwithasnapshotofonedayinthelifeofahealthyyoungadult.84%ofsurveyedspermdonorsand97%ofsurveyedeggdonorswerenevercontactedformedicalupdates.
4. Noaccuraterecordkeepingexistsabouthowmanyoffspringareconceivedforanyonedonor.
Records,ifanyarekept,areincompleteregardingthenumberofoffspringcreatedfromeachdonor,asallreportingisvoluntary.Therearemanylargecohortsofhalf-siblings,somenowaslargeas200.Ifurgentmedicalissuesarise,familiescannotthenbenotified.Manyfamilieswhoareonfilewiththespermbanksclaimthattheywerenevernotifiedaboutmedicalandgeneticillnessreportedtospermbanksbydonorsandbyfamilieswhousedthesamedonor:theylearnaboutthegeneticandmedicalissuesbyconnectingwithotherfamiliesontheDSR.
5. Aroundthreequartersofsurveyeddonoroffspringadvisethatprospectiveparentsdonotuse“anonymous”donors.Manycountrieshavebannedanonymousdonationandweallneedtoaskthequestion“whatisinthebestinterestsofthechildtobeborn?”“Anonymity”isnevertheanswer.ManyheartfeltstoriesandtestimonialsbydonoroffspringhavebeenreportedtotheDSR.Manyparentsusedonorconceptioninsteadofadoptionbecauseageneticconnectionisimportanttothem,butthennegatetheimportanceofthatverysamegeneticconnectionwhenitinvolvestheirchild’srelationshiptothe“donor”,theotherhalfoftheirchild’sgeneticfamily,ancestryandmedicalhistory.
6. Manydonorconceivedchildrenlongtoconnectwiththeirhalfsiblingsandtheirdonorslongbeforetheyare18.18isanarbitrarynumbersetbyclinicsandspermbankstoprotecttheirownfinancialliability.Thisagelimitisnotbackedupbyanypsychologicalresearch.Quitetothecontrary,researchhasshownthatmanywishtoconnect,andhavemadesuccessfulconnections,longbeforetheageof18.ThousandshavebeendoingsoontheDonorSiblingRegistryformorethan16years.Manyeggclinics(notonespermbank)havebeenconnectingdonorsandparentsontheDSR
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(anonymously)frompregnancyorbirthforyears.Thisallowsparentsanddonorstoshareandupdatemedicalinformationrightfromthestart,anditallowschildrentohaveaccesstotheirbiologicalparentsfromthemomenttheystartaskingquestions.
7. DNA:DonorsNotAnonymous.Anonymityisathingofthepastandshouldn’tbepromisedtoanydonorortoanyprospectiveparent.Spermbanksandeggclinicsneedtostopthefallacyofselling“anonymous”donors.DonorconceivedpeoplehavebeenlocatingtheirbiologicalparentsviaDNAtesting(alongwithGoogleandsocialmedia)since2005,asreportedinNewScientistMagazine,sothisisnotnews.DonorsdonotneedtotesttheirownDNAinordertobeeasilyfoundbyoffspringand/ortheirparents,andthereisnolawprohibitingcontact.Donorsmustbewillingtobeknownbyanyoffspringtheyhelptocreate-andlongbeforeoffspringturn18.
8. Becauseofthisendtoguaranteedanonymity,non-disclosureisnolongeranoption.Manypeoplewhoswabbedtheircheekstolearnmoreabouttheirancestryandfamilytreehavebeenshockedtofindoutthattheyarenotgeneticallyrelatedtooneoftheirparents,becausetheirparentsusedadonor,andkeptitasecret.Manyhavealsobeenshockedtoconnectwithhalfsiblings.Findingoutinthiswaythatyourparentshavenotbeenhonestcanwreakhavoconadonoroffspring’ssenseoftrustandstabilityinthefamily.Ifyouareaparentwhohasyettotellyourdonorconceivedchildthattheywerecreatedwithhepofadonor,nowwouldbethetimetohavethatconversation,andwecanhelpwiththat.It’snevertoolatetotell.
Familysecretscanbetoxic,andyourdonorconceivedchildhasarighttoknowaboutthemethodologyoftheirconception,abouttheirmedicalbackground,andabouttheirancestry.Ifparentshavenottold,thereisusuallysomegriefassociatedwithinfertilitythatisunresolved,orthereisanunfoundedfearaboutanon-bioparent’srelationshipwiththechildbeingnegativelyaffectedbythetruthcomingout.
Parents:Thisshouldn’tbeaboutyourunresolvedgrief,yourhesitations,oryourfears.Thisshouldbeaboutwhat’sinthebestinterestsofyourchild,andtheirrighttothetruthaboutthemselves,
theirmedicalbackground,theirancestry,andtheirgeneticrelatives.Aftertelling(orafteryourchildrenfindoutviaDNAtesting),pleasedonotaskyourchildrentokeepthe“secret”.Thismayhavebeenyoursecret,butitshouldn’tbetheirs.Thistypeofresponsecouldcauseunnecessaryresentment,anger,andupset.Secrecyimpliesshame,anddonoroffspringhavenothingtobeashamedof,mostcertainlynotthemethodologyoftheirconception.Getyourselfsomecounselingtohelpworkthroughyourunresolvedgrief,fear,orshamesothatyoudon’tpassitalongtoyourchildren.Youare,andalwayswillbeyourchild’smomordad.Youcanworkonbecomingamoreconfidentparent,secureintheknowledgethatyourchildknowingthetruthwon’trattlethestrongparentalfoundationthatyouhavebuilt.
9. Tellingisjustthebeginning.Manyparentsthinkthatjustbecausetheyhavetoldtheirchildabouthis/herorigins,thatthiswillbeenough.Manythenminimizetheimportanceofthe“donor”,thinkingthatbecausetheydon’tfeelDNAisimportant,thentheirchildshouldn’teither.ParentsneedtoknowthattheirchildmayviewthisinvisibleonehalfoftheirDNAtobebeaveryimportantpartoftheiridentityandtheymayfeelanurgencyaboutgatheringinformationandalsoconnectingwiththeirpreviouslyunknowngeneticrelatives.DNAisn’ttheonlywaytomakeafamily,buttheimportanceoffamilialDNAconnectionscan’tbedenied.Honoryourchild’scuriosity,andletthemknowthattheyhaveyourfullsupportastheyventureoutformoreinformation.Don’tbehaveinawaythatforcesyourchildtosearchforanswersbehindyourback,asthatcanonlycreatemoreresentment.Theyneedyoutobeontheirteam.
10. Thechoicesyoumakeearlyonaboutcreatingyourfamilywithadonorwillaffectyourdonorconceivedchildformanydecadestocome.Trytothinkbeyondyourownneeds,andeducateyourselfaboutwhatwenowknowtobetruefordonorconceivedpeople.
TheDonorSiblingRegistry(DSR)isaUSbased,globalregistrywithamissionofconnecting,educating,andsupportingallthoseinthe“donorfamily”.The501(c)3non-profitorganizationfacilitatesmutualconsentcontactamongdonors,recipientsandoffspring,sothattheycanshareimportantmedicalinformation,
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andexplorenewrelationships.Sinceit’sinceptionin2000,theDSRhashelpedtoconnectalmost14,000ofits52,500memberswiththeirfirst-degreegeneticrelatives.
*Nooneis“donating”anything,asalleggsandspermaresold.
FINDING OUR PEOPLE: Wendy and Ryan Kramer’s Story
FindingOurPeopleGuestBlogbyEllenS.Glazer
Assomeoneinveteratelycuriousaboutpeople’slives,Ihit“paydirt”recently.NotonlydidIgettohearafamilystoryinsomedetail,butitwasnot“justany”familystory.My“paydirt”tookmetoaseriesofinterviewswithWendyKramer.Ihadtheincrediblepleasureofhearingaboutherexperiencesasamomhelpingherson,Ryanfindhispeople.Asthesearchunfolded,itwasclearthatthesewereWendy’speopleaswell.Hereisabitaboutwhywehadtheinterviewsandhowtheyworked.
Firstthewhy…FormanyyearstheDSRwebsitehasreceivedandsharedfamilystoriesofsearch,connection,kinshipredefined.Countlessstorieshavebeenoffered,butonehasremainedlargelyinthebackground.IknowthatasaboardmemberandreaderofthebookFindingOurFamilies:AFirst-of-Its-KindBookForDonorConceivedPeopleandTheirFamilies,IknewbitsandpiecesofWendyandRyan’sstory,butIhadnosenseofatimeline,ofhowmuch—ifatall—thewebsiteassistedRyaninhispersonalsearch,aboutwhat–ifany—relationshipsRyanhadwithgeneticsiblings,hisdonor,extendedfamily.TherewerepiecesofinformationbutIhadlotsof
questions.Admittedly,I’mafamilystoryjunkie,butinthisinstance,IwasprettysureIwasnotaloneinmycuriosity.Frommyperspective,thiswasastoryworthtellingandlongoverdue.
Nowthehow…Thiswasthefunpart!Idon’twatchTV,buthaveheardfromsomanyothersofthethrillofmovingfromepisodetoepisodeofanexcitingandengagingseries.Whoamongushasnotknown–orbeen—someonetetheredtoMadMenorOrangeistheNewBlack.Overthecourseoffiveorsixweeks,Ihadmyownthrillofgoingepisodetoepisode:formeitwastheWendyandRyanstory.
IsupposethatWendyandIcouldhavecoveredtheKramer’sstoryinonelong,intensephonecallbutthatwouldn’thaveworkedforme.InsteadIneededtotakeeachepisodein,writeitup,marinateonwhatI’dlearnedandthenmoveon.ItwasclearthateachtwistandturninRyanandWendy’sjourneytaughtthemnewlessonsaboutfamilyandthattheselessonswerewellworthpassingontoothers.Iwantedtonotonlyhearthisfascinatingstorybuttomakesenseofit.AndsoitwastothisendthatWendyandIspokeonceeachweekforaboutanhouroverfiveweekspan.Irememberlookingforwardtoeachcall,eagertofindout“whathappenednext”andhowitwasallunfolding.
Ourconversationscontinueduntilthestorywascurrentandtherewasnothingmoretotell—atleastnotyet.HopefullyWendywillsharenewchaptersintheirstoryastheyunfoldandIwillhavetheopportunity—Ihope—toaddthemtothenarrativeyouwillseeontheDSRwebsite.Fornow,IhopethatyouwillfindFindingOurPeople(thelinktothepdfcanbefoundhere,ontheDSR’sBoardMemberPage)asmovingandcompellingasIdid.Itmorethansatisfiedthisfamilystoryjunkie.
-EllenGlazer,November2016
(ThisstorybyEllenGlazercanbefoundinitsentiretyatthebottomofthisdocument).
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The Ambiguity of “Open” Sperm Donation
JANVANEYCK:VIRGINANDCHILDWITHSAINTSAND
DONOR-EARLY1440S
Yetagain,thehighlyunregulatedmedicalfieldofspermdonationisfailingparents,donors,andthedonorconceived.Thistimewe’recallingattentiontotheirinabilitytomanageortoofferanyconsistencywithnon-anonymousspermdonationpracticeandpolicy.Theconceptissimple:a“donor”(nooneisdonatinganything,amanispaidforhissperm)makesnon-anonymousspermdonations(heagreestohavecontactwiththechildrenhehelpstocreatewhentheyturn18),parentswantingachildpurchasethatdonor’ssperm(mostvialsofnon-anonymousspermarealotmoreexpensivethananonymoussperm),achildisconceived,andthespermbankmakesmoney.
Wearenowhearingfromfamilieswhopurchasednon-anonymoussperm,onlytofindoutlateronthatthisisnotthecase.Spermbanksarefailingtoprovidethatwhichboththedonorandtheparentsagreedto.
Thisissuehighlightstheneedtolegallybandonor“anonymity”soasnottoleavetheinterpretationofanon-anonymous(oftencalledan“open”ora“willing-to-be-known”)donor,toeachdifferentspermbank(oreggclinic),ortothewhimofyoungdonors,manywhodonatewhileincollegeandwhoareneverproperlyeducatedorcounseledabouttheneedsoftheresultingchildrentheyarehelpingtocreate.
Werecentlyheardfromtwoparents(differentdonors)whousedPacificReproductiveServices(PRS):
“Mysonis19andlastyearcontactedPRStobegintheprocessofcontactinghis“willingtobeknown”donor.PRStoldmysonhisdonorwasanonymousandhecouldn’tcontacthim.Ihadallmypaperworkthatclearlystatedotherwise.Uponfurtherinvestigation,PRStoldusthedonorhadchangedhisstatusfrom“willingtobeknown”to“anonymous”onemonthafterIconceived.”
“Throughyourwebsite,wehavemadecontactwithmanyfamilieswhousedourdonor.Ourdaughterwillbe18nextyearandwaslookingforwardtogettingmoreinformationaboutthedonoratthattime.Weunderstandfromoneoftheotherfamiliesthatthedonorwishestochangehisstatustoanonymousandhasrefusedcontact.Wewerealsotoldthatthespermbank’sattorneysarepreparingalettertosendtous.Needlesstosay,we’reterriblydisappointedandhaven’tfiguredouthowtobreakittoourchild.”
ManymorePRStestimonialshere.
APRSparentreceivedthisexplanationfromPRS:
‘About“WillingtobeKnown”Donors:Mostofourdonorsarewillingtobeknowntothechildrenconceivedasaresultofartificialinseminationwiththeirdonatedsemenwhenthechildhasreachedthelegalageofconsent(18yearsoldinthestateofCalifornia).ThechildmustcontactPRStoinitiatethedisclosureofthedonor’sidentity.PRSwillattempttoarrangeameetingbetweenthedonorandthechild.IfPRSisunabletoarrangesuchameeting,thedonor’sidentifyinginformationwillbereleasedtothechildtoenablethechildtopursuethisprocessonhis/herown.Thechildwillsignacontractspecificallyrequestingthats/herespectthedonor’sprivacyinpursuingameeting(i.e.,notdiscussingthepurposeofthemeetingwithanyoneexceptthedonorhimself).Onceameetinghasoccurred,thedonor’sobligationhasbeenfulfilled.PacificReproductiveServicescannotguaranteethatthemeetingbetweenthedonorandthechildwilloccur.PRSmustrely
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solelyuponthedonor’srepresentationandsignedcontractthatheiswillingtobeknown.’
Somedonorswhoeitherchoseanonymity,orwhowerenevergivenachoice,becomeinterestedinconnectingwiththechildrentheyhelpedtocreate.
FromtwoFairfaxCryobankdonors:
“Itoo,donatedmorethan20yrsagoatFairfax.I’vetriedallmethodsofwhichIcouldthinktogetFairfaxtoopenmyrecordtoanyoneseekingit.Theydeniedmeeverytime,andhavecontinuedtodenyme.Theywouldn’teventellmemyowndonornumber.Fortunately,onebiologicalsonfoundmeontheDSR.”
“FairfaxlistedmeasanonymouseventhoughIhadsignedseveraldocumentsthatallowedformyinformationtobegivenout.”
ManymoreFairfaxCryobanktestimonialshere.
FromthreeNewEnglandCryogenic(NECC)parents:
“Ichosea“yes”donor/donorreleaseoption,havepaperworksayingtheinfowillbereleasedtomydaughteronceshe’sofage,yettheownerofthebankisnothonoringtheagreement,andwouldn’tevenreturnaphonecallformonths,thenafteroneokay/civilconversation,inwhichsheagreedtocallmebackwithnoinformation...completelydisappearedandnevercalledback.”
“WehavebeentryingtoworkwithNECCtocontactouridentityreleasedonorformonthsnowandarenothavinganyluckhearingbackfromthemastothestatusofourrequestexceptthattheyhavethepaperworkneededtomoveforward.Phonecallsandemailsarenotreturned.”
“IamgoingthroughthiswithNECCnow!ItisdraggingouttomonthsandIcan’tgetanyinfofromthemastowhatistakingsolong.Theyactedlikethiswasthefirstrequestfordonorcontacttheyhadgotten.....”
ManymoreNECCtestimonialshere.
FamilieswhousedCaliforniaCryobankshouldknowabouttheir“open”donorpolicy:AcoupleofyearsagoIaskedCCBaboutthepolicy,andwastoldthatwhenachildof18requestedcontact,thedonorsweresentaletteronlyaskingthemto“update”theirinformation,notmentioninganythingaboutachilddesiringcontact.So,ifadonorreadtheletterandthought“I
havenothingtoupdate”he’dlikelyjusttosstheletter.Hewouldneverknowachilddesiredtomeethim,andthechildwouldthinkthatthedonorrefusedcontact.SoIaskedCCB:“Yourrepsaidthatwhenthereisarequest,donorsaresentaletterto‘update’theirfile.Theyarenotactuallynotifiedthatachildactuallywantstomeetthem.Isthistrue?Thiscouldexplainthelowresponserate,asthedonorsarenotmadeawarethatachildisactuallywantingtomeetthem.”
ThereplyIreceivedbackfromCCB:
“Oursystemissetuptoprotecttheinterestsofallparties.Wecontactthedonorsviamailand/oremail.Ifhechoosestorespond,weexplainthesituationandaskifheisinterestedinmovingforwardwiththecontact.Tosendaletterwithinformationaboutanoffspringoutofthebluecouldbeveryjarring,irresponsible,andcouldultimatelyillicitanevenlowerresponseratefromthedonorswhodonotunderstandthespecificsoftheinteraction.Wedon’tphonethemuntiltheygiveustheok,becauseiftheyhaveawifeorchildrenwhocouldanswerthephone,itcouldputtheminanawkwardposition.”
FromaCaliforniaCryobankdonor:
“AsanIDReleaseDonormyadultoffspringshouldbeabletocontactCaliforniaCryobank,say“Hey,#XYZWwasmydonor.Pleasegivemehiscontactinformation.”EverytimeIhavemovedorchangedphonenumbersoremailaddressesIhavedutifullyupdatedCaliforniaCryobank.SoIaskedoneofmy20yearoldkids(whoImetthroughtheDSR7yearsago)totestthespermbank.Hecalledthem,andwastransferredtovoicemail.Ifigurednobodywouldcallhimback,butloandbeholdtheydidcallhimtoday.Theyaskedhimabunchofquestionstoprovehisandhismother’sidentity,thentoldhimIwasananonymousdonor(Lie)andtheydidn’thavemycontactinformation(Lie)buttheywouldtrytogetintouchwithme.”
ManymoreCaliforniaCryobanktestimonialshere.
Thespermbankshandle“open”donationsdifferently.Some,likeCaliforniaCryobank,sendthegenericlettertodonorsaskingthemto“updatetheirinformation”,andiftheydon’thearback,that’sconsidereda“no”.Manyspermbankssaythattheywill“try”tocontactdonorstoseeiftheyarestillopentocontactwithoffspring.Sometimestheycan’tfindthedonors,and
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sometimestheyneverreplytoan18-year-old’srequestforcontact.
Idon’tthinkthespermbank’swebsiteorcontractverbiagemattersmuchatall.Weknowofdonorswhotriedtochangefromanonymoustoopen,butcouldn’t.Andweknowaboutdonorswhoare“open”butneverrespondtocontactrequests.Wealsoknowabout“open”donorswhooutrightrefusecontact.Andweknowaboutdonorswhochoseanonymityandwho,whengiventheopportunity,areveryopentoestablishrelationshipswiththeirbiologicalchildren.
Fromtwoformerlyanonymousdonors:
“Readuponthecurrentwisdomandknowledgethat’sdevelopedovertheyears.There’smoretoitthanmakingafewbucks.”
“Youareinvolvedinthecreationofrealpeople,notanabstractconcept.Theywillliveandbreatheandgrow,andtheywillwanttoknowaboutyou.Bereadytohaveabigheart.”
Whenchoosingaspermbank,it’simportantforprospectiveparentstoresearchbeyondthemarketingmaterialsonaspermbank’swebsite.TheDonorSiblingRegistryhasa“WhichSpermBank”pagewhereusertestimonialscanbefound.
MysonRyanwasthefirstdonorconceivedperson(thatweknowof)tolocatehis“anonymous”donorvia
DNAtestingin2005.Manydonorswhochoseanonymityareindeedopentocontactwhengiventheopportunity,andluckily,ourswas.Ryanandhisbiologicalfather(below)haveenjoyedmorethanelevenyearsofgettingtoknowoneanotherandhehasalsobeenabletoestablishawonderfulrelationshipwithhisbiologicalgrandparents.NoneofthatwouldhavebeenpossibleifnotforcommercialDNAtestingcreatinganavenueseparatefromthespermbank’sanonymitypolicies.
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No Laws Prohibit Donor Recipients from Reaching Out to Donors
Irecentlyheardfromawomansofearfulaboutspermbankrepercussionsthatshewouldn’tmakeaphonecalltotheDonorSiblingRegistry(DSR)forfearofhavingthecallsomehowtracedbyherspermbank,andsheevenopenedupananonymousemailaddressjusttoaskmeaboutsigninguptotheDSRandcontactingherdonor.
Sheincludedthisspermbankcontractverbiage:
PurchaseragreesthatPurchaserhasnorighttolearntheidentityofadonorandwillnot,directlyorindirectlythroughathirdparty,makeanyattempttocontactadonor.
Thisappearstobenomorethanafeartactic,asweknowofnooneeversuedbyaspermbank/clinicforreachingouttotheirdonor(byaparent)ortotheirbiologicalfather/mother(byadonorconceivedperson)eitherviatheDSRorthroughanyothermethod.(Wehave16yearsofexperienceandmorethan52,000membersontheDSR.)
Manyeggandspermdonorsandrecipientparentshavebeentoldbytheirdoctors,clinics,agenciesandspermbanksthattherearelawsprohibitingdonorsandparents/offspringfromconnecting.Recently,aparentsigneduptotheDonorSiblingRegistrywhousedCryogenicLaboratories(Fairfax/GIVF/CLI,shippingtoCanadianandworldwideclinics),saying,“ifthelawschange,thisdonormightbewillingtomeethisoffspring.”WhenIquestionedheraboutit,shesaidthatshewastoldbyCLIthattherewerelawsprohibitingcontactbetweendonorsandfamilies.
Therehaveneverbeenanylawsthatprohibitcontactbetweengeneticrelativesformedviagametedonation.Anysuchagreementsignedbyrecipients
anddonorsforbiddingcontactisthereforeinoperative.
Anattorneywhoisalsoadonorconceivedpersonweighsinonthetopic:
Familylawtrumpscontractlaw:Familylawalwaysputsthebestinterestofthechildbeforeall.Aparentcan’tsignacontractthatrestrictswhatisinthebestinterestofthechild.Nocourtwouldruleagainstthisasit’sunenforceable.
Itwouldseemthatthespermbanksandeggclinicswhocontinuetospreadthisfalseinformationhavedonesoonlytoprotecttheirownliabilities.Forexample,ifaspermbankpromisesdonorsorfamiliesalimitof10or20childrenperdonor,revelationsthattheactualnumberisinmanycasesconsiderablyhigher(inoneknownexample,around200)wouldshedlightonthegrossshortcomingsoftheirrecordkeeping.Ifmedicalissuesarereportedtoaneggclinicorspermbankandnotsharedamongfamilies,orifthesaleofgametesfromwhichseriousmedicalissuesareknowncontinuestobesoldandsickchildrenareborn,thesubsequentfacilityliabilitycouldbesevere.
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AsadonorIupdatedmymedicalrecordsbetweendonations.TheydidnotpassthoseupdatesontopreviousrecipientsNORrecipientsthatcameafterthoseupdates.Ionlyknowthatbecauseafamilythatcameafterthatinsistedoncontact.Sheshowedmealloftheinfoshehadgottenonme.Thoseupdateswerenotincluded.AnyoftheupdatesIhavedonesincehavenotbeenpassedontohereither.
Thereisalsotheriskthatfamiliesmightdiscoverthatdonorswerenotnecessarilyhonestwithself-reportedhealthandeducationinformationtheyreportedontheirdonorprofiles.
AllofthesescenariosarefrequentlyencounteredbyfamiliesontheDonorSiblingRegistry,underscoringtheneedforhonesty,accuraterecordkeeping,andaccountabilitybyspermbanksandeggclinics.Thesefacilitiesneedtostopfalselythreateningfamiliesanddonorswhowishtoreachouttooneanother.Mutualconsentcontactcanbemadebetweenanyoftheparties,atanytime.ConnectingwithfirstdegreegeneticrelativesviatheDSR,socialmedia,GoogleorDNAtestingiscompletelylegal.
It’stimefortheseeggandspermsellingfacilitiestostopworkingsohardtokeepdonorsandrecipients
fromeachother,andstartsupportingandpromotingcontractsthatallowcontactrightfromthestartontheDonorSiblingRegistry.
WhatDoesARelationshipWithTheDonorSiblingRegistryDoForYourSpermBank/EggClinic/Agency?
CONTACT:Theissueofcontactbetweenthedonorandtherecipientfamily(andhalf-siblingfamilies)isremovedfromthehandsandfocusofthefacility.Messages,photosandmedicalinformationcanbeshared,allwhileremainingprivate.
CONSENT:SincetheDSRreliesonmutualconsent;thefacilitydoesn’tneedtobeworriedaboutprotectinganyone’sprivacy.
CHOICE:Eachpartycanremainanonymousiftheychoose,sothedecisionisultimatelyinthehandsofthoseinvolved.Eachpartycandecidehowmuchinformationthey’recomfortablesharing.
CURRENTMEDICAL:ThesharingandupdatingofmedicalrecordshappensontheDSR,sothefacilityhaslessworksincetheyhaveprovidedatoolformedicalupdates.
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“Donor Babies” are Sometimes Grandparents!
WhilehikingonatrailnearmyhomeinColoradolastmonth,Imetupwitha57yearoldmanwhorecognizedmefromtheDonorSiblingRegistryandidentifiedhimselfasa“donorbaby”.Thisgotmethinkingaboutallthe“donorbabies”outtherewhoarecloseto,oralreadyatgrandparentage.
Theutilizationof“donated”gameteshastakendecadestobepubliclytalkedaboutasanacceptedmethodologyforachievingpregnancy.Today,thenumberoffamiliesusing“donated”(nooneisreallydonatinganything,asallgametesaresoldandthenbought)spermoreggshaveskyrocketed.TheDonorSiblingRegistry(DSR)members:donors,parentsanddonoroffspring,arenowatmorethan51,400.NoonecanknowforsurewhatpercentageoftotalworldwideoffspringaremembersoftheDSR,asnosuchrecordsarekept.
ThemajorityofdonoroffspringpostedontheDSRareundertheageof18.However,theDSRdoesincludemanydonorconceivedmembersbornmorethan50,60andevenmorethan70yearsago.TheoldestdonorconceivedDSRmemberwasbornin1943,backwhentheuseofdonorspermwasasecretiveandoftenshamefulprocedure.Parentswereadvisedtonevertellanyone,noteventheirownchild.Itwascommonforparentstobetoldtogohomeandhavesexsothattheycouldalwaysthinkthatthehusbandjustmightbethebiologicalfatherofthechild.Familysecretsdohaveawayofbeingdispelledthough:deathbedconfessions,foundpaperwork,chattyrelatives,andnowascommercialDNAtestingbecomesmorepopular,manyarenowshockedtodiscoverthesecretthattheirparentshadkeptfordecades.
Whilewestronglyrecommendthateveryonepostsonthesite,manyDSRmembersneveraddtheirpostings,soherearesomeveryconservativenumbersaboutolderoffspringages:
• 3offspringintheir70s• 42offspringintheir60s
• 72offspringintheir50s• 204offspringintheir40s
Therecommendedsecrecywasoftenrootedinthefactthatitwasnotuncommonfordoctorstoinseminatepatientswiththeirownsperm,evenintothe1980s.Duringthistime,thepatientsweremostlywomenmarriedtoinfertilehusbands.Thesedoctorsweresecretly(thecoupleswereoftentimestolditwasa“medicalstudentintheotherroom”)inseminatingtheirpatientsfordecades.Sometimesitwasalabworkerinthefacility,andinoneknowncase,itwasthedoctor’sweekendhandymanwhodonatedforthreedecadesafterhavinghisownchildreninthedecadebeforeheevenstarteddonating.
Havingadecadeswidespreadbetweenhalfsiblingsisnotuncommon.DonorconceivedpersonBarryStevens,nowinhis60’s,reportsthathehaslocatedhalfsiblingsbornbetween1944-1972.Fourdecadesofoffspring,allsharingthesamebiologicalfather:theirmother’sdoctor.
DonorconceivedpersonBillCordrayreports,“Myfather(mymother’sgynecologist)wasbornonthelast
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dayof1907.HisoldestsonwasborninFeb.1937.IamtheoldestDIadult,borninJuly1945andmyyoungestnewDIbrotherwasborninMay1966.”Hegoesontosaythatheknowsof,“...twoorthreeotherswhowerebornayearorsoearlierthan1945.”Billnotesolderdonorconceivedpeoplethatwereknownaboutbackinthe1980’s,“Accordingtowhat[authorAnnetteBaran]toldme,therewasoneDIadultinhersmallstudywhowas68atthetimeshewroteLethalSecretsin1987.”
ManyconferencesthatIseestilladdressspermdonation,andeveneggdonation,(whichhasnowbeenaroundformorethan30years),as“new”reproductivetechnologies.Sowhilemanyoftheissuessurroundingtheethicsofthereproductivemedicineindustryarenewtothepubliceye,thesemethodologieshavebeenaroundforalongtime.Thesearenot“new”discussionstous,thestakeholders:parents,donorsandoffspring.Astimesgoeson,we’llcertainlycontinuetohearmorefromtheresultingchildren,asmoreofthembecomeoldenoughtocontributevaluablepublicinputregardingtheveryindustrythathelpedtocreatethem.
Andfinally,itshouldberecognizedthatit’snotjustthedonor-conceivedpeoplewhoarebecominggrandparents,it’salsothedonors,manyofwhodonatedbackwhentheywereincollege.
Thisdonorhadtheopportunitytomeethisfirstgrandchildonthesamedaythathemethisbiologicaldaughterfortheveryfirsttime.Sincethen,he’sbeenabletowelcomehissecondgrandchildintotheworld,becominganimportantfigureinthelivesofhischildandgrandchildren.
Themorethan13,600donor-offspringandhalf-siblingrelationshipsformedontheDSRhavebecomemultilayeredovertime,andcanspangenerations.Thisnumberwillcontinuetogrowandtheserelationshipswillcontinuetoenrichthelivesofbothdonorsandthedonorconceived,solongastransparencyanddisclosurecontinueonasacommongoal.Endingthepromiseofanonymitytobothdonorsandprospectiveparentswouldfurther“colorin”themissingpiecesofgenetichistories,andbringemotionalhealthandevenphysicalpeaceofmind,wellness,andaboveall,happinesstothedeservingdonorsanddonorconceivedpeople.
*CartoonbyJenMoore
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A Multi-Billion $$ Unregulated Industry With No Oversight. What Could Possibly Go Wrong?
Manyspermandeggdonorsandrecipientshavebeentoldbytheirdoctors,fertilityclinics,andsperm/eggbanksthattherearelawsineffectprohibitingdonorsandparents/offspringfromconnecting.Recently,aparentwhousedCryogenicLaboratories(CLI)(1)joinedtheDonorSiblingRegistry.Shesaid,“ifthelawschange,thisdonormightbewillingtomeethisoffspring.”WhenIquestionedheraboutit,shesaidthatshewastoldbyCLIthattherearelawsprohibitingcontactbetweendonorsandfamilies.
Therehaveneverexistedanylawsthatprohibitcontactbetweengeneticrelativesformedviagametedonation.
Thespermbanksandclinicswhohavespreadthisfalseinformationhavedonesoonlytoprotecttheirownliability.Forexample,ifaspermbankpromisesdonorsorfamiliesalimitof10or20childrenperdonor,revelationsthattheactualnumberinmanycasesisconsiderablyhigher(forexample,50,150,or200children)wouldexposethegrossshortcomingsoftheirrecordkeepingandtheirhonesty.Donorsshouldknowthatdonatingfor5years,2-3timesperweek(whichisnotuncommon)could,intheory,resultin
thousandsofsellablevialsofspermbecauseeachdonationcanproduceupto24sellablevialsofsperm.Additionally,spermbankshavebeenknowntoselladonor'sspermformorethantwodecades.
Furthermore,ifmedicalissuesarereportedandnotsharedamongfamilies,orifthesaleofspermwithknowngeneticmedicalissuescontinuestobesoldandchildrenwithgeneticabnormalitiesareborn,thesubsequentspermbankliabilitycouldbesevere.
Familieshavealsodivulgedthatsomedonorswerenotnecessarilyhonestwithself-reportedhealthandeducationinformationdisclosedontheirdonorprofiles.Theseissues,(andothers)arefrequentlyencounteredbyfamiliesontheDonorSiblingRegistry,underscoringtheneedforbothaccuraterecordgatheringandrecordkeepingbyspermandeggfacilities.
Sincespermbanksandeggclinics/banks“selfregulate”itisquiteobviousthatsomeregulatoryentityneedstostepinandprovidesomeproperoversight.Regulationsareneeded;lawsareneeded.Thisindustryneedstobemonitoredandheldaccountable.
WhiletheFDAmandatestestingofdonorsforSTD's?andahandfulofotherdiseases,donorsreporttotheDonorSiblingRegistrythattheywerenevergivenphysicalexaminations,andallmedicalinformationisselfreported-nomedicalrecordsaretransferredtothespermbanks.
SeanTiptonoftheAmericanSocietyforReproductiveMedicine,theentitythatissuesunenforcedguidelinesfortheindustry,continuallyframesthisdiscussionofregulationasoneof“reproductiverights”.He
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frequentlysaysthatregulationwouldkeepparentswhodesperatelywantchildrenfromhavingthem.Thisisascaretacticheusestokeepregulationoutofthespermandeggdonorindustry.It'sthistactic,alongwithlobbyingandspendingmoney,thathaskeptregulationoutofthereproductivemedicineindustry.Thisisnotaboutreproductiverights,thisisaboutanunregulatedindustrythatisfertilegroundforunethicalandirresponsiblepractices.
Lawsorregulationsareneededregarding:
1. Record-keepingondonors,parents,andoffspring
2. Numberofchildren?borntoadonor
3. Limitsonthenumberofvialssoldforeachdonor
4. Searchingfor,andcontactingbiologicalrelatives
5. Donorsdonatingatmorethanoneclinic
6. Comprehensivemedicalandgenetictestingofdonors,e.g.fullgenomesequencing(nowbelow$1500)
7. Creatingasystemwherethesharingandupdatingofmedicalinformationamongfamilieswhohaveusedthesamedonor,andeventhedonorhim/herselfisavailabletoall
8. Informedconsentinspermandeggdonationandspermandeggpurchase.Boththedonorandtherecipientshouldknowthatformorethan11yearsDNAtestinghasmadeanonymityathingofthepast.Anonymityshouldn'tbepromisedtoanyone.
Propereducationshouldberegulatedandmandatory.
1.ParentcompanyGIVF:FairfaxCryobank/CLI:ShipstoworldwideclinicsincludingCanada.
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A Brief History of Donor Conception
EarlyHistory
1322
Artificialinsemination(referredtoasAIuntilthe1980s)wasfirstusedsuccessfullybytheArabsonmares.
1425-1474
UnofficialhistoryclaimsthatthefirstattemptstoartificiallyinseminateawomanweredonebyHenryIV,nicknamed“TheImpotent”.
1784
ThefirstartificialinseminationinadogwasreportedbythescientistLazzaroSpallanzani(Italianphysiologist,1729-1799).Thisinseminationresultedinthebirthofthreepuppies62dayslater.
1799
Thismethodofconceptionwasfirstattemptedonahumanbeingintheyear1799bytheEnglishphysicianDr.JohnHunter.
JohnHunter(1728-93)wasabrilliantScottishsurgeonknownforpioneeringresearchintovenerealdiseases,childdevelopmentandthelymphaticsystem,amongmanyotherthings.Althoughhelikedtoexperimentonhimself—particularlyunfortunateinregardstohisresearchintosyphilisandgonorrhea—theofficial
surgeonofEngland’sKingGeorgeIIIwasalsowasknowntoinstillwithinhispatientsanequalzealforself-experimentation.
Whenayoungmarriedman,desperatetohaveachildwithhiswife,cametohimin1790withagrimconditionknownashypospadias,inwhichtheurethrabasicallytakesawrongturnouttheundersideofthepenis,Hunterdevelopedaplan.Heequippedhispatientwithacollectionoflargesyringesandaprescriptionforfrequentmasturbation.Hewastocollecthissemenandinjectitintohiswife’svagina.Tragically,theexactdetailsoftheirbedroomanticsarelostforever,butthefellowdidreportedlyfollowdoctor’sordersoverthecourseoftwoyears.Bymostaccounts,asinglepregnancyresulted,andDr.Hunterhadproventhepossibilityofartificialinseminationinhumans.Butitwouldbeawhileyetbeforeanyphysicianwouldformallytakeupthecauseofassistedreproduction.
1866
ThepracticespreadtotheUnitedStatesin1866whenDr.J.MarionSimsofNorthCarolinaconductedaseriesoffifty-fiveinseminationswithvaryingdegreesofsuccess.
30
1884
TheearliestrecordedAIinamedicalinstitutiontookplaceattheJeffersonMedicalCollegeinPhiladelphiabyDr.WilliamPancoast.Itwassosecretthateventhewomanbeinginseminatedwasn’ttoldthatthespermwasfromadonor,notherhusband.Afascinatingstoryworthtellinghere:
In1884,Dr.WilliamPancoastoftheJeffersonMedicalCollegeinPhiladelphiawentrogueanddecidedtohavealittlescientificfunwithoneofhispatients,aQuakerwomanwhohadlongbeenunabletoconceive.Aftermanyexaminations,hedecidedthatthefaultinfactlaywithherhusband’slowspermcount.Theman,anelderlymerchantmanyyearsolderthanhiswife,wasofficiallyshootingblanks.
Ratherthaninformherandherhusbandofthesadstateofaffairsandmoveonfromapointoffulldisclosure,Dr.Pancoastsummonedthewifetoonefinal“examination.”AsthewomanlayunconsciousandchloroformedonhistableassixofDr.Pancoast’sstudentslookedon,thegooddoctorinjectedintohercervixalargesyringefullofsemen-freshlydonatedbythestudentdemocraticallydeemedbythegrouptobethemosthandsome.
Thisunnamedwomandeliveredahealthybabyboyninemonthslater.Presumably,allwereecstatic.TheonlyproblemwasthatDr.Pancoastneveractuallyinformedheraboutwhathedidtoheronthetablethatfatefulday.Whetheritwastosparehertheembarrassmentofherhusband’ssterility,orwhetheritwassimplytoseeifhecoulddoitatall,Dr.
Pancoast’sexperimentremainedasecretsuccessfor25years.
ItwasonlyafterDr.Pancoastdied—aquarter-centuryafterthesuccessfulinseminationofhispresumablypleasedpatient—thatthetruthbecameknown.In1909,oneofthestudentspresentthatday,thesuggestivelynamedandincrediblyhandsomeDr.AddisonDavisHard,fessedupandpublishedaletterinthejournalMedicalWorldcontainingallthedirtydetails.ItisinterestingtonotethatDr.Pancoastdidactuallyinformthewoman’shusbandofwhathehaddone,andthattheyhaddecidedtogethertospareherthetruth.Inaddition,beforetheletterwaspublished,Dr.Hardtookituponhimselftotelltheby-thenall-grown-upbabyboyaswell.Hopefully,hismotherwasnotasubscriberofMedicalWorldinheroldage.
1890-1910
AIgainedacceptanceandpopularityinEuropeandRussia.In1897Dr.Heape,anoutstandingreproductivebiologistfromCambridge,reportedtheuseofAIinrabbits,dogsandhorses.Andin1899thefirstattemptstodeveloppracticalmethodsforartificialinseminationweredescribedbyIlyaIvanovichIvanoff(Russia,1870-1932).AlthoughIvanoffstudiedartificialinseminationindomesticfarmanimals,dogs,rabbitsandpoultry,hewasthefirsttodevelopmethodsasweknowtodayinhumanmedicine.
1894-1909
1n1909,Dr.Hamiltonclaimstohaveusedartificialinseminationforfifteenyears,“withoutasinglefailure”.
1924-1928
In1924,Rohlederinasurvey;oftheworld’sliteraturewasabletofindonly123casesreported,whilstin1928Engleman,inafurthersurveywasonlyabletoincreasethisfigureto185,ofwhichsixty-fivehadbeensuccessful.
1937
Hiihner,writingin1937claimstohavebegunextensiveuseofthepracticein1915.
1941
IntheUnitedStatesalone,AIresultedintenthousandsuccessfulpregnancies.InEngland,thefirstpublicationofamodernaccountofwhatwasthencalled‘DonorInsemination’(DI)wasproducedintheBritishMedicalJournal.Thedoctorbehindthe
31
research,MaryBarton,wasvilifiedinthepressandcondemnedworldwide.Dr.MaryBartonstatedthatoveraperiodoffiveyearsabout300childrenhadbeenconceivedasaresultofartificialinsemination.
1941
In1941itwasreportedthat9,489womenhadbeensuccessfullyimpregnated,andthat97percentofthepregnancieshadterminatedsuccessfully.Thesefigureswerecompiledfromaquestionnairesentto30,000doctors,ofwhom7,643replied,andofthese4,049reportedthattheyhadcarriedoutsuccessfulimpregnations.
1940s and 1950s
AIwascarriedoutdiscreetlybyprivatemedicalpractitioners.Itwasdecidedthatitwasbesttoleaveunregulated(andremainssotoday).Parentsweretoldtonevertellanyone,noteventhechild.(Thispracticeofsecrecycontinuesonfordecades,andisstillrecommendedbysome“experts”,eventoday.)
1951
FurtherevidenceastotheextentofthepracticeintheUnitedStatesisthestatementmadebyPloscowetotheeffectthatbyI95Ithenumberofchildrenbornasaresultofartificialinseminationhadrisento20,000.
1953
Asaresultofthisresearch,thefirstsuccessfulhumanpregnancywithfrozenspermatozoawasreportedin1953.
1955
ANYPostarticlein1955estimatedthenumberofchildrenconceivedviaAItobe50,000,andgrowingby6,000peryear.
1963
Atthepresenttimeresponsibleestimatesindicatetherateofonethousandtotwelvehundredbirthsperyear,althoughhigherestimatesareoffered.
MoreRecentHistory:
1970s
Thespermbankingbusinessbecomespopularandcommercialized.
1979
Of711physicianslikelytoperformartificialinseminationbydonorsurveyedtodeterminetheir
currentpractices,471responded,ofwhom379reportedthattheyperformedthisprocedure.Theyaccountedforapproximately3576birthsbythismeansin1977.Inadditiontotreatinginfertility,26percentofthesephysiciansusedtheproceduretopreventtransmissionofageneticdisease,and10percentusedifforsinglewomen.Donorsofsemenwereprimarilyfromuniversities,wereonlysuperficiallyscreenedforgeneticdiseases,andwerethenmatchedphenotypicallytotherecipient’shusband.Mostrecipientswereinseminatedtwicepercycle.Only17percentofphysiciansusedthesamedonorforagivenrecipient,and32percentusedmultipledonorswithinasinglecycle.Only37percentkeptrecordsonchildren,andonly30percentondonors.Theidentityofdonorsusuallywascarefullyguardedtoensureprivacyandtoavoidlegalcomplications.
1987
TheOfficeofTechnologyAssessmentmadevisitsto3spermbanksand10invitrofertilizationclinics.
Atotalof1,558questionnaireswerecompletedandreturnedbythesampledphysicians(aresponserateof61percent),whichincluded37physiciansinthecross-sectionalsampleand385fertilitysocietyphysiciansregularlydoingartificialinsemination,i.e.,seeingfourormoreinseminationpatientsperyear.Anamendedsurveyformwasalsosentto30U.S.commercialspermbanksidentifiedbytheAmericanAssociationofTissueBanks(MTB)andtheAmericanFertilitySociety(AFS),and15ofthoseformswerereturned.Thesurveyestimatesthat172,000womenunderwentartificialinseminationin1986-87,atanaveragecostof$953,resultingin35,000birthsfromartificialinseminationbyhusband(AIH),and30,000birthsfromartificialinseminationbydonor(AID).
Theseincompletenumbersfrom1986-1987arestillusedtodaybythemediaandbyindustryexperts.Thishasledmanytothefalseconclusionthatthereissomeentityrequiringrecordkeepingonthechildrenbornfromeggandspermdonations.WhileSARTinsiststhattheyhaveaccuratenumbersonthenumberofeggdonorbirths,researchfindsthatmorethan40%ofparentswereneveraskedtoreportthebirthoftheirchild.
Theoften-citedfigureof30,000birthsperyearisbasedonanextrapolationfromaverysmallnumberofvoluntarysurveyresponses.Thesefiguresarefurtherconfoundedbyasharpdeclineofpractitioners
32
atthattime,dueinparttoincreasedquarantinerequirements(includingrestrictionsagainstfreshsemen)resultingfromthecirca1984discoverythatsemencouldtransmittheHIVvirus.
PriortotheAIDScrisis,donorinseminationwaslikelymuchmoreprevalentinsmallclinicsanddoctor’sofficesintheabsenceoffreshsemenrestrictions.IntheyearsfollowingtheOTAreport,theprevalenceoflargespermbanksandincreasingacceptanceandpopularityofthetechnologysuggestsfigureshavelikelygrownconsiderably.Asaresult,theOTAfiguresmostcertainlyunder-representreality.
OtherKeyDates:
1953:Firstsuccessfulpregnancyusingfrozensperm.
1977:Firstsuccessfulinvitrofertilization(IVF)pregnancyachieved(althoughnobirthresulted.
1978:FirstbabybornfromIVF(LouiseBrown,inEngland).
1981:FirstIVFbabybornintheUnitedStates(ElizabethJordanCarr).
1983:FirstsuccessfuleggdonationatUCLA.
1984:Firstbabybornfromafrozenembryo(ZoeLeyland,inAustralia).
1990:Firstchildbornfollowingpre-implantationgeneticdiagnosis(PGD).
1992:Firstsuccessfulpregnancyusingintra-cytoplasmicsperminjection(ICSI).
1996:A63-year-oldwomaninCaliforniagivesbirthusingadonatedegg.
1997:Firstsuccessfulbirthusingfrozeneggs.
1999:NatalieBrown,youngersisterofLouiseBrown,becomesthefirstIVFbabytonaturallygivebirthtoachild.
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The Donor Sibling Registry Reaches 50,000 Members!
TheForcewithus!May4,2016!
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Sperm Donation Needs Federal Regulation
Accesstocriticalinformation--andhonestyofdonors--mustbearule
RecentreportsofparentssuingalargeU.S.spermbank,Xytex,becausetheirdonorwasfoundtohaveacaseofunreportedschizophreniaaswellasanunreportedcriminalhistorythatincludedjailtimehaveraisedalotofquestions:Dothesefamilieshavetherighttobeupsetwiththedonor?Shouldhehaveself-reportedhisupdatedmedicalinformationandcriminalrecordwiththespermbank?Shouldtheburdenbeplacedonthespermbank?
Thiscasehighlightsthelackofregulationandoversightinthesperm-donorindustry.Theseparentsonlylearnedofthedonor'spastbyconnectingwithotherfamiliesontheDonorSiblingRegistry,ofwhichIamthedirector,andonXytex'sownwebsite.Howlongwillwecontinuetoseetherepercussionsofanindustrythatexhibitsalackofaccountability,ethicsandresponsibilitythatwewouldnormallyexpectinanyothermedicalarena?
Alltoofrequently,theDonorSiblingRegistrycounselschildrenofspermdonorswhoinheritundisclosedgeneticdisorders,discoverthattheirdonorwasdishonestabouthismedicalhistory,orfindthatthespermbankdidn'tnotifythemaboutreportedillnessoramendtheirdonor'smedicalprofile.Thesetypesofsituationshavebeenreportedfordecades.
Thenumberandseverityoftheseincidencesisdiscomfiting.Familiesclearlyneedtobewarnedaboutpossiblehereditarydisorders.
Sincedonorscanfathermanyoffspring,donorscanpotentiallytransmitdiseasetoscoresofchildren.
Currently,manyspermbankseitherrefusetoupdatedonor/offspringmedicalinformation,or,eveniftheyacceptupdates,areunabletosharetheinformation,asmanydonothaveanaccurateaccountingofallchildrenbornfromanyonedonor.Sometimestheycanmaketheprocessofreportingsocomplexorexpensivethatdonorsandrecipientssimplycannotaffordtocomply.
AccordingtoDonorSiblingRegistryresearch,84%ofitsspermdonorssurveyedwerenevercontactedformedicalupdates,andalmostaquarterofthemsaidtheyorclosefamilymembershadhealthissuesthatwouldhavebeenimportantforfamiliestoknowabout.
Toooftenthemedicalprofileofaspermdonorismerelyasnapshotofonedayinthelifeofahealthyyoungman.Itoftendoesn'trevealwhatwillhappenfiveor10yearsdowntheroadtothedonorortomembersofhisimmediatefamily.
TheFoodandDrugAdministrationrequiresspermbankstotestforSTDsandasmallhandfulofotherdiseases.Mostspermbanksalsoobtainaself-reportedpersonalandfamilymedicalhistoryinordertoidentifyanyrecurringissuesthatmaybegeneticinorigin.Andsomeconductbasictestingtodetectspecificmutationsofspecificgenesandcheckforcarrierstatusofthemostcommongeneticconditions,suchascysticfibrosisandspinalmuscularatrophy.
Butwithoutfullgenomesequencing,itisimpossibletoknowaboutthethousandsofothergeneticconditionsthathavebeendiscoveredsofar.Andsincemanydiseases,likeschizophrenia,oftendonotaffectpeopleuntiltheyareadults,withoutaclearchannelfor
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communicatingandupdatingmedicalinformationamongfamiliesanddonors,wewillcontinuetohearaboutstorieslikethisone.
Thisisaninternationalissue.ThelargeU.S.andDanishspermbanksclaimtoshipspermtoclinicsinmorethan40and50countriesworldwide.Toprotectdonors,recipientsandoffspring,wemustimplementoversightandregulationbyanindependentauthority.
Itsfirstordersofbusinessshouldbetorequireaccuraterecordkeeping,limitsonthenumberofchildrenbornforanyonedonor,andcompulsorygeneticandpsychologicaltestingofalldonors.
ThiscommentarywaspublishedinTIMEMagazine4/25/16
http://time.com/4299641/sperm-donation-needs-federal-regulation/
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Egg Donation: Reporting Discrepancies & Medical Issues
Wecanseehugediscrepanciesregardingstatisticsthatthereproductivemedicineindustryreportsforthehealthofeggdonorsfollowingdonations.Thisinformationisregularlygiventodonorsbeforetheydonatetoreassurethemthattheprocessissafe.
ForexampleUCSFMedicalCenteroffersthisinformationtopotentialeggdonors:
Thereisasmallriskofovarianhyperstimulationsyndrome(OHSS)developingduringaneggdonationcycle.
Anotherwebsite,AngelEggDonationreports:
InfindingsreportedtotheASRM,OHSSisassociatedwithapproximately1%ofAssistedReproductioncycles.
However,ourresearchpaintsadifferentpicture.Inourfirstpublishedstudyof155eggdonors,wefoundthat30.3%reportedOvarianHyperStimulationSyndrome(OHSS).
Inoursecondsurveyof176eggdonorsin2014,wefoundthat32.4%ofeggdonorreportedcomplicationssuchasOHSSandinfection.
Well,hereisonepossibleexplanationforthediscrepancyintrackingcomplicationswitheggdonors.ThisisfromarecentemailIreceivedfromaformereggdonorontheDonorSiblingRegistry:
Iwokeupduringoneretrieval.WhatIrecallisthatthedoctorwasroughly,rapidly,andaggressivelyplucking
myeggs.Icouldseetheimageofmygrosslyinflatedovaryonthescreen.Iprotestedinsomeway-calledoutinpainorsaid“hey!”Hisreactionwasangry-Ifelthostilitydirectedatme;it'spossiblethatthenursewasactuallytheintendedrecipientofthisanger.Perhapsshehadn'tknockedmeoutsufficiently.
IsubsequentlyhadsymptomsofOHSS(“warnings”orinformationaboutthishadbeenextremelylightanddismissive).Mycallstotheclinicwentunanswered.Idrovedownthereinstead.Theyquicklygotmeoutofthewaitingroomfullofhopefulparents,lookedateachother,andtoldme,“well,gototheERthen.Idon'tknowwhatyouwantustodo.”KeepinmindthattheyknewaheadofthiscyclethatIwouldnolongerbedonating.Therewasneveranyfollowupfromtheclinic.
Interestingly,therecordsIrecentlyrequestedandreceived(afterinterventionfrommydoctor)don'tincludeanythingaboutthatcycleotherthanafewbloodtests,whereastherecordsforthepreviousdonationsincludedetailedsonogrammonitoringoftheprogressoftheeggs,informationaboutthemeds(namesanddosages),andthedateandtimeofthetrigger.
ACanadianjournalistdiscoversotherreasonsthatOHSSineggdonorsmaynotbereportedaccurately(relevanttoUSdonorsaswell):
TherearemanyreasonswhyCARTR(CanadianAssistedReproductiveTechnologiesRegistry,whichismaintainedprivatelybythemedicaldirectorsofinvitrofertilizationclinics)dataondonor-adverseeventsmaynotbecomplete.Foronething,it'snotcommonpracticeforfertilitydoctorstoformallyfollowupwithdonorsafteraprocedure,unlessthewomenarespecificallyatriskofOHSS.Severalphysicianstoldmethattheysimplyinvitedonorstogetintouchifthere'saproblem.Somewomendoso,butothersmayhavealreadylefttown,orthey'retoldbybrokersnottocontactdoctorsdirectly.Healthconcernscanalsoturnupweeks,monthsorevenyearsafterthedonation.Bythatpoint,it'snotclearifthey'rerelated,sosomedonorsdon'tmentiontheseissuestotheirfertility
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doctors.Withoutdeliberatefollow-up,doctorsmaynotbeawareofwhatgoeswrongafterthefact.
SeanTipton,theASRM'slobbyistrespondstothecallsforlongtermhealthstudiesoneggdonorsinaTIMEMagazinearticle:Thelong-termhealtheffectsofeggdonationhaveneveractuallybeenstudied,inlargepartbecausethehighcostofstudiesdoesn't“seemjustifiedintermsofwhatthepossiblerisks[oftheprocedure]mightbe,”accordingtoSeanTipton,spokesmanfortheAmericanSocietyforReproductiveMedicine(ASRM).
Additionally,wheneggdonorssuffermedical/geneticissuesafterdonatingthatrecipientfamiliesshouldknowabout,theyoftentimeshavetroublegettingthisurgentmedicalinformationthroughtheclinicsandontothefamiliesthatdeservetobeintheknow.
We'verecentlyheardfromseveralmoreformereggdonorswithmedical/geneticissuesthattheyfeltimportantforrecipientfamiliestoknowabout:
IdonatedmyeggsfourdifferenttimesatGenetics&IVFInstituteinFairfax,VAinthe90s/early00s.SincethenIdiscoveredIcarryagenewhichmeansI'matamuchhigherriskforgettingseveraltypesofcancer.SincethenI'vetriedtocontactGenetics&IVFInstitutesothattheycanrelaythisinformationtomyoffspring(theyhavea50/50chanceofinheritingit)buttheywerenotinterestedanditwasobviousthattheywerenotgoingtoinformthefamiliesdespitethefactearlyscreeningcouldpotentiallysavethesechildren'slives.
I'verecentlyturned42yearsoldandIwasjusttoldthisweekthatImostlikelyhaveOvariancancer(thiswillbeconfirmedthroughpathologyaftersurgery)andthatIwillneedmyovaryremovedasap.Idon'tknowifthisisbecauseofdonatingmyeggswhenIwasyoungerorbecauseofmyfamilyhistory.It'sveryupsettingeitherway.
Theydidn'tupdatemymedicalinformationwhenInotifiedthem.Ihavecontactwith1/5ofmyrecipients.Shewasmy3rddonation.Inotifiedthem
priortothatdonationofseveralissues.Shedidnotreceivethoseupdatesuntilwegaineddirectcontact,andIupdatedthemforher.Itmakesmesicktothinkthishappenstomorethanjustourcase,andwithconditionsworsethanwhatwasfoundinourfamily.
InotifiedGIVFin2005(7yrsafterdonation)thatIhadbeendiagnosedwithageneticcondition.Someonetherepromisedthattheywouldpassalongtheinformationtoanyrecipients.Lastyear,throughDSR,arecipientandImadecontact.No,theyhadnotbeennotified.Iimaginethishappensalot.
IfyouusedtheCooperCenterforIVFbetween1997-1999,orknowanyoneelsethatdid,pleaseseethepostingsforthisclinicontheDSR.ContactWendyifyouneedmoreinformation.Ihavebeenamemberoftheregistrysince2004.Idonatedeggsin97,98,and99.Iamconcernedaboutthechildrenthatmayhaveresultedfromthosecycles.IhavebeendiagnosedwithAutosomaldominantPolycystickidneydisease(ADPKD).Ihave4children,2havethedisease.Onedoesnotandtheyoungesthasnotyetbeentested.Heis15andconceivedfromthecyclein99.Ikept3eggsanddonated20.IcontactedtheclinicimmediatelyafterIfoundout.Theycompletelyacceptedtheinformationbutdidnotgivemeanyrealindicationthattheywouldrelaytheinformation.Ilostmymomin2005toaneurysmasaresultofthedisease.Myniecehadaneurysmsurgery4yearsago.Shewastheyoungestdiagnosedwithseriouscomplications.Mysistersarebothinrenalfailurewaitingfortransplants.
TheSocietyforReproductiveTechnology(SART)claimsthattheydohaveaccuraterecordsofbabiesbornthrougheggdonation.Inourresearch,wefoundthat42%ofparentsofeggdonorchildrenwereneveraskedtoreportthebirthoftheirchild.Sohowisitthenpossibletohaveaccuraterecords?AndwhydobothSARTandASRMcontinuetoblockallcallsforaccuraterecordkeeping?
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THINKING ABOUT SELLING YOUR SPERM OR EGGS?
Sellingyourspermoreggsmeansmuchmorethanpayingforaspringbreakvacation.
Thiskindofirresponsibleadvertising(fromaNYspermbank),onlygoestoshowthelackofpropereducationgiventoprospectivedonorsaboutdecisionsmadenowforaquickbuck,thatcanaffectthem(andtheirfamilies)fortherestoftheirlives.
Ifyouareconsideringsellingyourspermoreggs,areyouthinkingaboutyourmedicalhistory,past,presentandfuture?
Wouldyoubewillingtoprovideongoingcurrentmedicalinformationwithrespecttoyourselfandyourimmediatefamily?Asa“donor”,itisimportanttoconsidertheongoingramificationsforanychildrenconceivedwhoshareyourDNA.Ifyousellyourspermthisyear,thespermmaybesoldformanyyearsintothefutureandpotentialmothersmaykeepthatspermformanyyearsafterpurchase,attemptingtoprovidetheirchildrenwithfullbiologicalsiblings.SeveralfamiliesontheDonorSiblingRegistry(DSR)reportthattheyknowofhalfsiblingsmorethan20yearsapartinage.Eggdonorswhodonatetotheneweggbanksarenowfacingsimilarsituations.
Shouldyouoramemberofyourimmediatebiologicalfamilydevelopahealthormedicalissuefollowingyourinitialcompletionofthedonorinterview,itwouldbeessentialthatyouprovidethisinformationtothespermbankoreggclinic/agency/bankandposttheinformation(anonymouslyifyou'dlike)ontheDSRwebsite,http://www.donorsiblingregistry.com/,whichenablesdonors,recipients,andoffspringtomakemutualconsentcontact,tomeeteachother,andalsotoshareandupdatemedical/geneticinformation.
Publishedresearchhasrevealedthat97%ofeggdonorsand84%ofspermdonorshaveneverbeencontactedtoupdatetheirmedicalrecords,while31%ofeggdonorsand23%ofspermdonorsreportthatthey,orimmediatefamilymembersdidhavemedical/geneticissuesthatwouldbeimportanttosharewithfamilies.
It'snotjustyourlooks,intellectorathleticabilitiesthatmightgetpassedalong.Susceptibilitytodiseaseisalsoofteninherited.Formanyyearsafteryouroriginaldonation,childrenwhoshareyourDNAmaydevelopmedicalandhealthconcernsthatcanonlybeproperlyaddressedwithyourupdatedinformation.
Conversely,itmightbecrucialforyoutoknowaboutanymedicalissuesreportedbyfamilies,asyoumaysomedayhavechildrenofyourown.Itisalsoimportanttonotethattheaccuracyofthemedicalandhealthhistoryyouprovidetothespermbankoreggclinic/agency/bankiscrucialtothepotentialparentsreviewingthatinformation.Certainconditionscarrygeneticcomponentsthatarenotreadilytestedfor,andyouraccurateinformationisvitalforproperscreenings,testing,andpreventativecare.
Ifyouhavechildrenofyourown,orplanto....
Haveyouconsideredthepossibilitythatinthissmallworldyourchildrenmayencounterbiologicalhalf-siblings?
Atthepresenttime,spermbanksandclinicsdonotkeep,noraretheyrequiredtokeep,anyrecordoflivebirthsresultingfromanyspecificdonor.WhatthismeansforthechildrenbornwithyourDNAisthattheymaybemanyinnumbers.Currently,thelargestgroupofhalf-siblingsontheDSRisaround200.Thechildrenyouhavenow,ormayhaveinthefuture,may
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meetyourbiologicalchildrenbornfromyourdonations.Randommeetingsamonghalf-siblingsareregularlyreportedontheDSR.Honestyisessential.Beforeyoudonate,consideryourwillingnesstobeforthrightwithyourchildren.
Areyouplanningondonatinganonymously?
Ifyouareplanningonbeingan“anonymousdonor”itisimportanttounderstandthatbecauseofadvancesinDNAtestingandInternetsearchengines,thelikelihoodofyourremaining“anonymous”inthefutureisgrowingsmaller.Haveyouconsideredwhatyourreactionwillbeifyouare“found”byyourbiologicalchildreninthefuture?Thechildrenbornfromyourdonationsmaybecuriousandwillwanttosearchouttheirancestry,medicalbackgroundsandtheirgeneticroots.Asnotedabove,manydonorshavemorethan20,50andevenmorethan200biologicalchildren.
Haveyouconsideredthepossibilitythatyouwillbecontactedinthefuture,evenifyourdonationisanonymous?Howwouldyourespondif,onedayinthefuture,youwereaskedtomeetwithyourgeneticoffspringandhisorherparents?Youwillneedtothinkaboutthefactthatthiscouldbepotentiallydisruptivetoanyfamilythatyoumayhaveformedinthetraditionalmanner.
Withthisinmind,wouldyouconsiderregisteringontheDSRsothaturgentinformationcanbepassedbackandforthrightfromthestart??
Pleaseconsider...
Pleaseconsiderhowyoumightfeelaboutyourdonationinthefuture.Itislikelythatmorethanonechildwillcometoexistasaresultofyourdonations.Thesechildrenaregeneticallyyours;infact,theymayonedayhavechildrenoftheirownwhowillbeyourgeneticgrandchildren!
Takeamomenttoimaginehowdonoroffspringmightfeel.Manywillwonderaboutwheretheygotsomeoftheirphysicalcharacteristics.Orwonderaboutwheretheygettheirtalentsandpersonalitytraitsfrom.Manyareextremelycuriousaboutgeneticfamilyhistoryandancestry.Andmanyfeeladeeplongingtoconnectwithandtoknowtheirunknowngeneticparent.
Imagineyourreactionifyourgeneticoffspringfoundyouandexpressedastrongdesiretoconnect,oriftheyneededalifesavingbonemarrowtransplant.Pleaseconsidertheseissuescarefullyasyoumakeyourdecisiononwhetherornottobecomeadonor.Youractionstodaymayhaveanincalculableeffectonthefuture.
Yourdonationismuchmorethanatransactionwithaspermbankoreggbank/clinic/agency.
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Donor Conceived People Searching – One Central Registry
DonorSiblingRegistry“Copycat”Sites–WhyDilutetheSearch?
Overthepastdecadeorso,therehavebeenafewDonorSiblingRegistry(DSR)“copycat”sites.(I'veaddressedthesecopycatsitesin2008and2013DSRblogposts).ThesesitessometimesclaimtoofferthesamecapabilitiesthattheDSRoffers.Theycomeandtheygo,andeventually,theyallfizzleout.Recently,Ihaveseensomenewonescroppingup.
SomehavestolenDSRwebsitecontentsuchasourfacilitylist,andthemostrecentonehasliftedourUserPolicy(andotherverbiagefromaroundtheDSRwebsite).Weworkedforyearstobuildourfacilitylist,whichincludeshundredsoffacilities,andhavespentmanyhoursoverthepastdozenyearsfinetuningourUserPolicy.Stealingourcopyrightedcontentisanindicatorthatthesenewgroups,inadditiontoclaimingtoreplicateourmission,andourSuccessStories,justdon'thavethevision,ortheabilitytoputinthenecessaryworktomakeaunique,innovativeorganizationoftheirown.
Thesenew“registries”simplydilutewhathasbeenasinglefocusedsearchingcapability.I'veheardfrommanyadoptedpeople,thattheywishtheyhada“DSR”typeofdatabase,onecentralplacetosearch.In
thesamevein,peoplesearchingforgeneticfamilyatthecommercialDNAsiteshavebeenfrustrated,asthereare3or4largeDNAcompaniesthatdon'tsharedatabases.Themoredonor“registries”thelesslikelypeoplearetofindoneanother.
BillCordray,fordecadesoneofthemostoutspokendonorconceivedpeopleintheUS,weighsin:
IthinkitisabadideatounderminethereputationofWendy'sworkbysettingupacompetitiveregistry.Althoughit'safreeInternetandyoucandowhatyouwant,itwilljustweakenthevalueofDSRifseveralsimilarregistriesaresetupandyou'dhavetogotoallofthemtodoanycross-checking.Asfarasthefeegoes,itismorethanreasonable.
Thesenewsitesboastthattheyarefree.Well,it'seasytobefreewhileyouhaveafewdozenmembers,orevenafewhundred.Wewerealsofreeforthefirstfiveyearsofoperation(2000-2005),asIranandbuiltthesitewithmyownmoneyandafewsmalldonations.Whenwehitmorethan7,000members,itbecameclearthatIwouldneedhelpfrommemberstocontinueexpandingourcharityorganization,aswereceivednooutsidefunding,andhaveanextremelycomplicatedsetofdatabases.Itwasonlythenthatwe
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turnedtoourmembersformembershipfeeassistancetohelpuskeeptheDSRup,runningandgrowing.
TheDSRwebsiteisstillcompletelyfreeforbrowsing,andthe$75/yearor$175/permanentmembershipfeesareonlyforpeoplewantingtoposttheirinformationormakecontact.Withalmost49,000totalmembers(donorconceivedchildrenandadults,parents,eggandspermdonors,and“others”),andalmost13,000peoplematched-youroddsareprettygoodformatchingontheDSR.Ifyouweresearchingforfirstdegreegeneticrelatives,youroddsaremuchbetteratawebsitewith49,000membersthanonewithafewhundred.
Thisnew“themorethemerrier”fallacyismisleading,andultimatelywillresultinkeepingdonorrelativesfromfindingeachotherwiththespeedandeasethatmanyothershaveexperiencedbeforethem.Creatingmore“registries”isonlyadisservicetodonorfamiliesaroundtheworld.IfthefocusistakenoffoftheDSR,itmakesitharderforpeopletoknowwheretopostthemselvessothattheyhavethebestchancesforbeingfound.
Thecopycatsitesservetodilutethesearch,asifyoupostonacopycatsite,youmayneverknowthatyourmatcheshavebeensittingontheDSRallalong.AfterournationalmediastoryonCBSafewweeksago,andasubsequentarticleinTeenVogue,familieswerereportingtomethatthenewestcopycatsitewastakingcreditformatchesalreadymadeontheDSR,
(spermbankshavedonethistoo),andspeakingoutpubliclyagainstmeandDSR.
So....copycats,ifyouwanttotrulymakeadifference,don'treplicatewhat'salreadybeendoneanddon'tbadmouthour15yearsofsuccessfullyconnecting,educatingandsupportingdonorfamilies,thepublic,andthereproductivemedicineindustry.Thinkforyourselvesaboutnewwaystoencourageandaffectamoreethicalandresponsiblereproductiveindustry.
MishaAngrist,PhD,MFA.(SeniorFellow,DukeInitiativeforScience&Society,AssociateProfessorofthePractice,SocialScienceResearchInstituteandVisitingAssociateProfessorofthePractice,SanfordSchoolofPublicPolicy,whohasinvitedtheDSRintohisMasterclasstohelpeducatestudents,hadthistosay:
IamhappyfortheretobeasingleDSR--anonprofitwithunimpeachablemotives.ForyearsWendyKramerhasworkedtirelesslytohelpdonor-conceivedpeoplefindeachotherandtheirbiologicalfamilymembers.ShehasspentmuchofherownmoneyandnowreliesonmembershipfeestokeeptheDSRafloat.Shehasearnedtherespectofthousandsoffamiliesbyconnectingandsupportingthemandbystandinguptothespermbanks.Iworrythatcopycatsiteshavethepotentialtounderminehereffortsandleaddonorfamiliesdownthegardenpath.
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An Open Invitation to All Sperm Banks
I'dliketosetachallengetoallspermbanksintheUS.
Iinviteyoutofollowinthestepsofmanyeggclinicsandagencies,andofferyourdonorsandparentstheoptionofwritingtheDonorSiblingRegistryintoyourspermbankingagreements-establishinganonymous(ifdesired)contactontheDonorSiblingRegistry,rightfromthestart.
TheDonorSiblingRegistry(DSR),isanon-profitorganizationthatassistsindividualswhowereconceivedasaresultofsperm,eggorembryodonation,andareseekingtomakemutuallydesiredcontactwithotherswithwhomtheysharegeneticties.Wefacilitatecontactamongsthalfsiblings(andtheirparents),andalsoconnectdonorsandfamilieswhowishtobeintouch--oftentimeslongbeforethechildrenturn18.
Since2000,wehavehelpedtoconnectmorethan12,700peopleonthewebsite,andnowhaveatotalof48,400members,includingmorethan2,400donors.OneDSRspermdonorwasfeaturedthisweekontheCBSSundayMorningNewsshowmeetingseveralofhisdonoroffspring.
Anotherdonordescribeshisheartfeltreasoningfordesiringcontact:
“Mydecisiontobeadonorwasinspiredbytheblessedgiftofmychildren.Theyandtheirhalf-siblings(Ionlyknowofasonanddaughter)havetherighttoknoweachother.Withhumility,IcansaythatI'veneverhadmisgivingsaboutbeingadonorandcontinuetodesirecontactwithoutanypresumptions.Isentaninquiryandpersonalletterto[myspermbank],and,havingsincediscoveredtheDSR,willtrusttheuniverseinthisquest.Asaparentofchildrenwhoarethelightofmylife,Ialreadyfeelanaffinitywiththeparentsofthesechildrenconceivedintrustandlove.”
We'rereachingouttopeoplewhofacilitatethecreationofhappyfamilies.We'dliketopartnerwithyou.Here'swhy:
• Aswemovetowardincreasedopennessasasociety,there'saparticularlystrongneedtostayattheforefrontofthetrendwithinthedonorindustry.
• 2012publishedresearch(ReproductiveBioMedicineOnline)on164spermdonorsshowedthat,while84%ofspermdonorshaveneverbeencontactedbytheirspermbanksformedicalupdates,23%ofthedonorsfeltthey,orclosefamilymembers,hadmedical/geneticissuesthatwouldbeimportanttosharewithfamilies.94%wereopentocontactwithoffspring.
• RegisteringontheDSRistheonlywayforparentsanddonorstostayanonymous(ifdesired)whilestillestablishingrelationshipsandsharingmedicalinfo.
• Itcanbeofequalmedicalimportancetodonorsthattheiroffspringprovideupdatedmedicalinformation,especiallyasthedonorsbuildtheirownfamilies.
• Wenowknowthatthereisdesireforearliercontactbetweendonorsandrecipientfamilies.Manyappreciatetheabilitytoestablishcontactandfosterrelationshipsasachildisgrowingup.Manythinkthat18isanarbitraryagethatdoesnotmeettheneedsofdonoroffspring.
• Familiesoftenwishtheycouldasktheirdonorssimplequestions,suchas,“Mysonwouldliketoknowifyoueverplayedamusicalinstrument?”or,“Isthereanydiabetesinyourfamily?”or,“My10yearolddaughterwouldliketosendyouafather'sdaymessage,isthatok?”
• TheDSRcanhelpbyprovidingavaluableservicetoyourparentsanddonors,andtoyourcompany-atnocosttoyou.(It'sawin-win-win!)
In2015,anotherpublishedstudyofspermdonorsinFacts,Views&VisioninOB/GYN(theScientificJournaloftheFlemishSocietyofObstetrics,Gynaecology&ReproductiveHealth),called“SpermDonorsDescribetheExperienceofContactwiththeirDonor-ConceivedOffspring”revealedthatmostofthesurveyeddonorshadbecomecuriousabout,andhadmadecontactwith,theiroffspring.Almosthalfoftherespondents
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nowconsideringtheirdonor-conceivedoffspringtobe“likeafamilymember”.Atthesametime,donorswererespectfuloftheintegrityofthefamilyinwhichtheiroffspringwereraised.
WhatDoesARelationshipWithTheDSRDoForYourSpermBank?
• CONTACT:Theissueofcontactbetweenthedonorandtherecipientisremovedfromthehandsandfocusofthespermbank.
• CONSENT:SincetheDSRreliesonmutualconsent;thespermbankdoesn'tneedtobeworriedaboutprotectinganyone'sprivacy.
• CHOICE:Eachpartycanremainanonymousiftheychoose,sothedecisionisultimatelyinthehandsofthoseinvolved.Eachpartycandecidehowmuchinformationthey'recomfortablesharing.
• CURRENT:ThesharingandupdatingofmedicalrecordshappensontheDSR,sotheagency/clinichaslessworksincetheyhaveprovidedatoolformedicalupdates.
• EMPOWER:Parentsanddonorsareempoweredtosettheparametersoftheirownrelationships,withoutamiddleman,andwithoutwaiting18years.Offspringhavetheopportunitytoestablishrelationshipswiththeirgeneticfatherswhiletheyaredeveloping,nothavingtowaituntiltheyareadults.
Weinviteyoutosetprecedentwithinthespermbankingindustry.Becomealeaderinfullyeducatingandsupportingfamiliesanddonors.Ifweask,“whatisinthebestinterestsofthechildbeingborn?”theanswerisnever“touseanonymousdonors”.Anonymityisantiquated.Itisaconceptofthepastintheadoptioncommunity,andbecomingsoinspermandeggdonationaswell.
Thedesiretoconnectisherenow,andwecanmovethespermbankingindustryforwardinanopenandsupportiveway,acknowledgingtherightsandneedsofdonorconceivedpeopletoknowabouttheirbiologicalparents,therightsofdonorstoknowaboutchildrenthattheyhelptocreate,andtherightsofparentstobetterservetheneedsoftheirdonorconceivedchildren.
Welookforwardtoworkingwithyou!WehavesamplecontractverbiageandfrequentlyaskedquestionsontheDSRwebsitetohelpyouincorporatetheDSRintoyourdonorandparentagreements.
Somefeedbackfromtheeggdonationindustry:
“MoreandmoreofourrecipientanddonorpairshopetosignupfortheDonorSiblingRegistry.Weoftenhavecommentsabouthowhelpfulyouareasfacilitator.”-Andi,OregonReproductiveMedicine
“EachyearIseemoreintendedparentswhowanttomakesuretheirchildoneday''hastheoption''tomeettheirdonoriftheywish.AsanagencyIamgratefulthatthereisaprogramlikeTheDonorSiblingRegistrythatcanbeanadvocateforthechild,donor,andintendedparentswhodesirethistypeofrelationship.”KatyEncalade,ProgramDirector,EggDonorSolutions
“Justwantedtosendanotetosayhowmuchourclinicappreciatesthisoptionforourpatients.Currentlyourofficeonlyoffersanonymousembryodonation.However,someofourpatientswouldlikeamoreopenarrangement.Yoursiteallowspatientswhotrustourofficeandwanttostaywithus,tohavethebestofbothworlds.Nowtheyhaveaplacewheretheycangotocontroltheamountofcontacttheyhavewiththeirdonororrecipient.It'stheperfectsolutionforthemandwearegratefulyouofferthisoption!”-ChristineTheFertilityCenter,MI
WhileexploringtheideaofEggDonationtobuildafamilythereareunknownscenariosthatfamiliesmayencounter.Itissimpleforbothintendedparentsandeggdonorstoconsidertheirfeelingsandneedsnowbutmaynotfullyunderstandwhatfuturequestionstheremightbe.
TheDonorSiblingRegistryallowsasafeandcomfortablewaytoallowfuturecommunicationwhenitbecomesapparentitwouldbebeneficialtoaparent,theeggdonor,oraresultingchild.TheRegistryallowsallpartiestoaskquestions,exchangemedicalinformation,andpossiblymeetwhenthetimeisrightforeach.TheDonorSiblingRegistryallowsallindividualstomoveattheirpaceandthelifetimemembershipisaworthwhileinvestment.-KallieWilson,MSW,CareCoordinator,EggDonorSolutions
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DNA = Donors Not Anonymous
Ican'thelpbutwonderwhenthespermbanksandeggclinicswillstartacknowledgingthatthereisnosuchthingasguaranteeddonoranonymity.IaddressedthisissueinmyrecentHuffingtonPostBlog,andithasbeenwrittenaboutmanytimesoverthepasttenyears,startingwithaNewScientistarticlefrom2005aboutaboylocatinghisdonoraftersubmittinghisDNAtoacommercialDNAwebsite.
Aquickreviewofsomeofthelargestspermbanksandeggclinicsfindsthatnotoneofthemmentionintheirdonorrecruitmentmaterialstheeasewithwhich,andthegrowingfrequencyofdonor-conceivedpeopleidentifyingtheirdonorsviaDNAtesting.Thisisnowaregularoccurrence.
Manyeggclinicsnotonlyofferanonymousdonors,butactuallyrequireanonymityforallinvolved.BecauseeggdonorchildrenarenowgettingtotheagewheretheyarestartingtogettheirownDNAtested,promisedeggdonoranonymityisalsobeingshowntobeamyth.Newfamilyfindertypeprogramsmakeconnectingviay-DNA(surnameconnections)nolongertheonlywaytofindgeneticrelativeswithDNA.
TheDSRrecommendsDNAtestingforitsmembers,butalsomanypeoplecometotheDSRbecausetheyonlyjustfoundoutthroughDNAtestingthattheywereconceivedusingdonorspermoreggs.After
confrontingtheirparentsaboutthenews,theylearnaboutwhichclinicorfacilitytheirparentsused,andsignupontheDSRtoconnectwithhalfsiblingsand/ortheirbiologicalparent.
LastmonthIhadaeggdonormomcontactmesayingthather19yearoldsonhadtoldherthathe'drecentlysentinaswabtohavehisDNAtestedwith23andme,andwaswaitingfortheresults.Itwasclearthatthisboyhadsuspicionsabouthisbiologicalparentage.ShewassofrozenwithfearthatevenwiththeimpendingDNAresultsontheway,shecouldn'tmusterthecouragetotellhimthetruthabouttheuseofaneggdonor.
Iseenoeducationalmaterialsonthespermbankwebsites,forbothdonorsandpotentialparents)addressingtheimportanceofdonor-conceivedchildrenknowingabouttheirgenetic,ancestralandmedicalhistories.NotonewebsitepointedtotheDonorSiblingRegistryasaplacetomakemutualconsentcontact(unlikemanyeggclinicsthatnowwritetheDSRintoinitialdonor-recipientcontractssocontactisestablishedrightfromtheget-go).
Bothspermandeggdonorsshouldknowthattheycanshareandupdatemedicalinformation,photos,andmessageswithfamiliesontheDSRatanytime.Thiscanbedonewithoutsharingidentifyinginformation,soifdonorsarenotreadytoestablishrelationships,
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theystillhaveavehiclewithwhichtoshareinformation.Anditgoesbothways,asmedicalinformationaboutthechildrentheyhavehelpedtocreatecouldbebeneficialtothemtoo,iftheyhave,orareplanningtohavechildrenintheirownfamily.
Thiseggclinicnotonlypromisesanonymityontheirwebsite,butalsoexplainswhyanonymityisusedbymostoftheirfamilies.Notonlyistherealackofeducation,theyaremisleadingparentstothinkthatchoosinganonymouseggdonorwillkeepanunwantedpartyfromintrudingontheirlives.Thismisleadingandincompleteinformationisgiventoparentsastheymakedecisionsthatwillaffecttheirchildfordecadestocome.
Ananonymousdonorisnotknownbyyou,therecipient.Withanonymouseggdonation,theeggdonor'strueidentity(nameandaddress)iskeptconfidentialinordertoensureprivacyandanonymity.Similarly,youridentitywillnotbedisclosedtothedonor.
Themajorityofeggdonationsareanonymousdonations.Manyintendedparentsfeelbetterknowingthattheireggdonorwillnotbeinvolvedduringpregnancy,andastheyraisetheirchild.
OneofthelargestUSspermbankshasthisontheirFAQpagefordonors:
Istheprogramconfidential?
Youranonymityisveryimportanttous.Alldonorinformationiscompletelyconfidential.Onlineapplicationsaresubmitteddirectlytoyourlocalfacility,andwedonotshareyourinformationwithoutsideparties.Donorfilesarenumericallycodedtoassureconfidentiality.Accesstofilesisrestricted.Youridentitywillnotberevealedtoanyrecipient,norshalltheidentityofanyrecipientbedisclosedtoyou.
Anotherspermbank'swebsitesays:
DonorConfidentiality
[SpermBank]takesgreatcaretoprotectyourprivacy.Ourdonorandpatientagreementsclearlyprotectandreleasedonorsfromanyobligationsandrightstoanychildthatresultsfromthedonor'sparticipationinourdonorprogram.NoidentifyinginformationisreleasedtopatientsoroffspringwithoutyourexpressconsentandparticipationintheIdentityDisclosureprogram.
Andfinally,fromthespermbankclaimingtobethe“largestinternationalspermbank”:
TheidentityofAnonymousspermdonorsalwaysremainsconfidential*
.....heterosexualcouplesseemtopreferAnonymousspermdonorsinordertoprotecttheman'sintegrityasthefatherandthustheirownfamilyidentity..
SpermbanksandeggclinicsneedtobothaddresstheissueofDNAtesting,andhowthisaffectstheperceivedandpromisedanonymityofspermdonors.Parentsanddonorsneedtobeadequatelyeducatedandgivenaccurateinformation.Andofcourse,ultimately,allanonymousprogramsneedtobeabolished.
Additionally,Ididn'tseeanyinformationincludedonthespermbankandeggclinicwebsitesfordonoroffspring.Incrediblethattheyhaveabsolutelynoacknowledgementorsupportfortheverypeopletheyarehelpingtocreate.
*Fulldisclosure:AsIwastryingtoexplain(inperson)howmysonlocatedhisdonorviaDNAtesting,thisparticularspermbank'sdirectorrespondedbytellingmethatnoneofhisdonorswouldeverswabtheircheeksforDNAtestingandthereforewouldneverbefound.Hecouldnotunderstand(andthereforecannotproperlyeducatehisdonors)aboutthefactthatadonordoesnothavetosubmithisownDNAinordertobefound.HealsotoldmethatbecauseoftheDSR,hisclinicwasnowoffering“invisible”donors.
IllustrationsbyJenMoore
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NBC Story: 48 Donor Siblings and the ASRM
HowOneGirl'sSearchBroughtHer48HalfBrothersandSisters
InNBC's11/6/15storyaboutdonorsiblingsthatconnectedontheDonorSiblingRegistry,weagainhearfromthespokespeopleattheAmericanSocietyofReproductiveMedicine(ASRM),andhowutterlydisconnectedtheyarefromtherealitiesofdonorfamilyissues.Maybethat'sbecausetheASRMismadeupoftheverypeoplethattheyaresupposedlymakingrecommendationsfor.Soit'sacaseofthefoxwatchingthehenhouse.Withoutanyoutsideregulationoroversight,it'sacaseof“self-regulation”byamulti-billiondollarindustry.(Whereelsehaveweseentherepercussionsfromasetuplikethat?!)
JudithDaar,thechairofASRM'sethicscommitteeandaprofessoroflawatWhittierLawSchool,questionswhetheritwouldbeappropriatetoputlimitsonspermdonors.
ButtheASRM'sSeanTiptondoesn'tforeseethefederalgovernmentestablishingaspermdonorregistry.
“Theydon'twanttospendthemoney,theydon'twantthehassle,”saysTipton.“Beforeyouaregoingtoregulatepeople'sreproductivechoices,youhavetohaveareallygoodreason.Idon'tthinkyouwanttojumpinonalegalsolutionwhereit'snotcertainwhatthelong-termconsequenceswouldbe.”“Couldasimilarregulationbeenforcedinanaturalsituation?Wouldwetellpeoplewhowantverylargefamiliestorestrictthenumberofoffspring?”saidDaar.“Ithinkwewouldnotfavorthelawlimitingtheindividual'sabilitytoprocreatenaturally.”
Right,Sean,butina“naturalsituation”thereisn'tthepossibilityofcreating200+childrenfromoneunknownperson.Andasfarashavinga“reallygoodreason”forlimitsandaccuraterecordkeeping,takealookattheDonorSiblingRegistryMedicalpage,you'llseealotof“goodreasons”whythisindustryneedssomesortofregulation,includingcomprehensivemedicalandgenetictesting,updatingandsharingofmedicalinformation,accuraterecordkeepingonthechildrenbornfromanyonedonor,andlimitsofthenumberofchildrenbornfromonedonor.Thelong-termconsequencesofestablishingamoreresponsible
industrywouldonlyhelpdonors,donorconceivedpeople,andtheirfamilies.
Insteadofpointingpeopletosituationsthatareunrelatedtous,thedonors,offspringandparentswhohaveuseddonorspermandeggs,whynotbebraveenoughtoaddresstheactualissue--thatthereisnooversightandregulationinahighprofitindustrythathasactedirresponsibilityandwithoutethics.Mr.Tiptonhasaddressedtheissueofregulationbysaying,“…weknowanyregulationofthatislikelytoimpedeaccessandincreasethecost.”Thisisnotaboutregulating“people'sreproductivechoices”,oramatterofmoney,asnooneischallengingaperson'srighttoreproduce.
Thisisadifferentconversation;abouttherightsofthechildrenthisindustryishelpingtocreate.Theyshouldbeabletoknowthattherearelimitsonamountofhalfsiblingstheycanhave,aswellashaveaccesstomedicalinformationandtotheirownfirst-degreegeneticrelatives.
Mr.Tiptontellsusthattheindustrydoesn'twantthe“hassle”ofcreatingaregistryforaccuraterecordkeeping.Ifeelthatregulationandoversightoftheinfertilityindustryisanecessity,andwouldonlyimprovethisbrokensystem,andhelpthousandsoffamilieswhohaveuseddonoreggsandspermtocreatetheirfamilies.
Apictureof200randompeople.ThispictureillustratesthelargestnumberofhalfsiblingsreportedtotheDSR.
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Biology and Birth Certificates: Our Right to Accuracy
MostU.S.citizensraisedbytheirbiologicalparentsneverquestionwhethertheinformationontheirbirthcertificatesisaccurate.Withtheevolutionofadoptionandalternatemeansofconceivingachild,“accurate”isanincreasinglysubjectiveterm.Isthepurposeofabirthcertificatetoportrayabiologicalaccountofaperson'sbirthparents,orisitanaccountofone's“legal”parents--theonesresponsibleforraisingthem?
TheU.S.BureauoftheCensuscreatedBirthCertificatesinthebeginningofthe20thCenturyasameansoftrackingtheeffectsofdiseaseandurbanenvironmentsonmortalityrates.ThetaskofissuingbirthcertificateswastransferredtotheBureauofVitalStatistics,adivisionoftheDepartmentofHealthandHumanServices,in1946whereitwasdecentralizedintoourfamiliarstatesystemsoftoday.
Asthedocumentevolvedoverthelastcentury,sohasitspurpose.Ithasbecomeanimportant(ifnotoursole)meansofidentificationwhenweobtainanythingfromadriver'slicensetoapassport.Ithasalsobecomeanindispensabletoolforgenealogicalresearchers.
Sohowdowedecidewhoshouldbelistedinthecategoriesof“Mother”and“Father”onabirthcertificate?
Fordonor-conceivedandadoptedpeople,thereisoftentimesacleardistinctionbetweenone'sgeneticparents,thosewithwhomyoushareDNA,andone'slegalparents,theoneswhohaverightsandresponsibilitiesattachedtotheirparenthood,andmost-times,theoneswhoareraisingthem.
However,ever-increasingnumbersofindividualsinbothsituationsareclamoringforreform,namelytheirrighttohaveabirthcertificatethatportraysaccuratebiologicalbackgroundaswellastheirlegalparentage.
Ourbirthcertificatepracticesconcerningnon-biologicalparentsbeganwithadoption.Inthemid-20thCentury,therewasrisingconcernthatadoptedchildren'sbirthcertificatesread“illegitimate.”Inresponse,statesbegantoissueadopteesamendedbirthcertificates,listingtheadoptiveparentsasiftheywerethegeneticparents,thushidingtheshameofthechild'sillegitimacyandtheadoptiveparents'infertility.Theoriginalscontainingthebiologicalparents'namesweresealedandnotavailabletoanyone(includingtheadoptee)exceptbycourtorder.Thenewbirthcertificatesshowednoindicationthattheyhadbeenamended,whichgaveadoptiveparentsaneasywaytonottelltheirchildrenoftheiradoption.
Despitethefactthat“legitimate/illegitimate”languagewasreplacedwiththemother'smaritalstatusin1979,thepracticeofamendingbirthcertificatestoreflectlegalparentagepersiststothisday.Inmoststates,adopteesoriginalbirthcertificatesremainsealed.
Nofederalbirthcertificaterevisionhasbeenissuedtoaddressdonorconceptionscenarios.Therefore,marriedcouplesinallstateswhousedonorspermareautomaticallygrantedtherighttolistthehusbandasthefatherandwomenwhousedonoreggstobecomepregnantarelistedasmothersonbirthcertificates.Noofficialasksthemiftheyusedanydonatedgametestoconceive,orforanyinformationaboutthedonorwhoisgeneticallyrelatedtothechild.Inaddition,insomestates,thebiologicalparentandthegayco-parentcanbothbelistedonthebirthcertificate.
Somanybelievethattheysharethesameancestryandmedicalbackgroundasbothparentslistedon
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theirbirthcertificate,wheninstead,theywereadoptedoraneggorspermdonorhasbeenused,andthechildsharestheirDNAwithanunknownperson(s).
Thereisawholehostofconcernsraisedbyadopteesandthedonor-conceived,includingtherighttoidentity,ongoingmedicalhistory,biologicalheritage,andtherighttoknowtheirgeneticparents.Howdowedealwithanadoptedordonor-conceivedperson'srighttoanaccuratebirthcertificate?Lookingahead,dowekeepthesamebirthcertificatestructure,orissomesortofadjustmentneeded?
Ourfederalgovernmenthasbeenagonizinglyslowtoaddresstheseissues,ifitacknowledgesthematall.Thereisalonghistoryofdeferringwhatitconsiders“familylaw”tothestates,includinghowparentageislistedonbirthcertificatesandwhetherornotadopteescanobtaintheiroriginalbirthcertificates.
Thishascausedmanytoattempttocircumventtheirstatesystembyhiringprivatedetectives,postingtheirinformationontheInternet,orusingcommercialDNAtestingcompanies.23andme,Ancestry.comandFamilyTreeDNAnowhavehundredsofthousandsofsubmissionsandarehelpingconnectthousandsoffamilytreebranchestooneanother.Inaddition,almost12,500donor-conceivedpeoplehaveconnectedwiththeirgeneticrelativesonDonorSiblingRegistry(DSR).Unfortunately,noneofthesemethodologiesguaranteethefindingone'sbiologicalparents.
Thebirthcertificateproblemexistsinothercountriesaswell.Asadopteesanddonorconceivedpeopleacrosstheworldfindtheirgeneticrelativesandparents,somehavetakenthetaskofproperdocumentationintotheirownhands.
Earlierthisyear,adonor-conceivedwomanintheUKsuccessfullyhadherbirthcertificateamendedtoremoveherlegalfather,andhavetheplacefor“father”blank,asshehasanunknownbiologicalfather(spermdonor).
Currently,amaninAustraliaispetitioningthecourtstodothesame,removinghis(nowdeceased)fatherfromhisbirthcertificate,saying,“I'mdoingthisbecauseIwantanaccurateandfactualrecordofmyconception,ofbirth.”Hegoesontosay,“It'snotjustformykidsbutalsomydescendantsinthatifanybodyinthefuturewastoconductgenealogyresearchonourfamily,Idon'twantthemtogodownthewrong
pathandiftheyhaveaninaccuratebirthrecord,theywillbasicallybelievealie.”
Adopteesareexpressingthesameconcernsaboutdescendantsbeingabletoconnectthedotswhenresearchingtheirancestry.Becausetwobirthcertificatesexistinadoption,there'snoguaranteethatthefactualonewouldbereleased&therefore“searchable”bydescendants.ThishasledmanyadopteesintheU.S.legallychangetheirnamestoreflectbiologicalrelationships.
Ignoranceofbiologicalancestryhashaddevastatingconsequencesforsome.IntheU.K.in2008,twinsthatwereseparatedandadoptedatbirthunknowinglymarriedeachother.Thisyear,aBraziliancouplefoundoutaftertheyweremarriedthatthesamebiologicalmotherhadabandonedthemasinfants.Randommeetingsamongsthalfsiblingsarenotuncommon,asmanyhavereportedinthenews,andontheDSR.Onemomrealizedthatadistantrelative,onewhomsheandherchildrenhadspenttimewithatfamilygatherings,haddonatedspermandwasinfactthebiologicalparentofherchildren.
Althoughcryobanksclaimtolimitthenumberofbirthstoonedonor,thisclearlyisn'tthecase.Wehaveseenasmanyas200halfsiblingsfromthesamedonorconnectontheDSR,andtherearemanymoregroupsof30,50,75andmore...andtheseareonlythosefamiliesthathaveregisteredonthewebsite.Clearly,thisposesapublichealthcrisis,inthecaseofsharedgeneticillness,oriftheoffspringareinaconcentratedgeographicareaand/ordonotknowtheyaredonor-conceived.
TheU.S.doesnotrequirecryobankstokeepaccuraterecordsonspermdonorfamilies,noraretheyforcedtolimitthenumbersofchildrenborntoanysingledonor.Ifadonorreportsaseriousillness,thereisnowayforthespermbankstonotifyallinvolvedfamilies.DiseasessuchasNF1,LynchSyndrome,CysticFibrosis,andHCM,asometimes-fatalgeneticheartcondition,haveallbeenreportedontheDSR,andhavebeenwrittenaboutinthemedia.HundredsofothermedicalconditionshavealsobeenreportedandsharedamongstDSRfamiliesandthesharingofthistypeofinformationhassavedlives.TheproblemisthattheDSRisavoluntarywebsite,andinmostcases,allfamilieswillnotbelistedandcontactable.
TheUSSurgeonGeneralreportsontheirwebsitethat,“Arecentsurveyfoundthat96%ofAmericansbelieve
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thatknowingtheirfamilyhistoryisimportant.”TohelpAmericansfocusontheimportanceofknowingfamilyhealthhistory,TheUSSurgeonGeneralalongwiththeDepartmentofHealthandHumanServicescreatedthe“FamilyHealthHistoryInitiative.”Thewebsitenotesthat,“Tracingtheillnessessufferedbyyourparents,grandparents,andotherbloodrelativescanhelpyourdoctorpredictthedisorderstowhichyoumaybeatriskandtakeactiontokeepyouandyourfamilyhealthy.”ItcertainlybegsthequestionwhytheDepartmentofHealthwould,byitsrefusaltoaddressthisbirthcertificatecrisis,preventmillionsofdonor-conceivedandadoptedpeoplefromhavingaccesstothisinformation.
TheUnitedNationsfelttheneedtoaddressidentityinArticles7and8initsConventionontheRightsoftheChild:
“Thechildshallberegisteredimmediatelyafterbirthandshallhavetherightfrombirthtoaname,therighttoacquireanationality...”(CRCArticle7)and“StatesPartiesundertaketorespecttherightofthechildtopreservehisorheridentity,includingnationality,nameandfamilyrelations...”(CRCArticle8).[3]TheU.S.hasyettoratifythistreaty.
DonorconceivedadultsintheInternationalDonorOffspringAlliancelisttheseastheir“SummaryofAims”:
Weassertthatpeoplehaveamoralrighttoknowthetruthabouttheirpersonalhistory.Wherethestatehascustodyofrelevantinformationithasadutynottocolludeindeceivingordeprivingindividualsofsuchinformation.
Adopteerightsorganizationshavebeenfightingfortherighttoidentity,includingtheunsealingoforiginalbirthcertificates,fordecades.AmericanAdoptionCongressstatesonitswebsite:
TheAmericanAdoptionCongressbelievesthatgrowth,responsibility,andrespectforselfandothersdevelopbestinlivesthatarerootedintruth.TheAACisthereforecommittedtoachievingchangesinattitudes,policies,andlegislationthatwillguaranteeaccesstoidentifyinginformationforalladopteesandtheirbirthandadoptivefamilies.
Itfollowsthat:
• Thetruthaboutanadoptedordonor-conceivedperson'sgeneticandsocialparentageshouldberecordedontheirrelevantpublicdocumentation.
• Inthenormalcourseofeventsoflifeitshouldbeimpossibleforapersontofailtofindoutthattheyareadoptedordonor-conceived.
• Theprincipallegalinstrumentalityofthisshouldbetheperson'sbirthcertificate.
Since1902,theU.S.hasmadetwelveStandardBirthCertificaterevisions.Legitimateconcernsraisedbytheadoptionanddonorcommunitiessuggestathirteenthfederalrevisionshouldbemadetoaccuratelyportraybiologicalidentityonbirthcertificatesandensurethatproceduresareuniformineverystate.
Mostintheadopteerightscommunityfeelthatissuingtwobirthcertificatestoadopteesisaleftoverrelicfromaneraofshameandsecrecyandshouldbeabolishedaltogether.Webelieveitisimportanttoissueonecertificateonlysoinformationcannotbehiddenfromtheindividualbyparentsorthegovernment.
Itisnoquestionthebestinterestsofthechildshouldbeparamount.Withthisinmind,forbothadopteeanddonorsituations,wewouldrecommendaU.S.StandardBirthCertificaterevisionexpandingthe“twoparentonly”formattoincludecategoriesforLegalParents,GeneticParents,andSurrogates.Inthecaseofadoptees,wewouldliketoseethechild'sbirthnamerecordedalongwithhisorherlegal/adoptivename.
Ifthebirthcertificateisamendedinanyway(suchasaddinglegalparentswhenanadoptionisfinalized)itshouldbeunlawfultoomitanyoriginalinformation,includingbiologicalrelations,fromthenewcopy.Wewouldalsoseektoabolishanonymousdonorconception,orattheveryleast,listtheclinicandthedonorIDonbirthcertificates.
Weunderstandandacknowledgethatthisrecommendedsystemisnotperfect.Whetherachildisadopted,donor-conceived,ornot,parentscanalwayslieonabirthcertificate.Asdonorconceptionismoreeasilyhiddenthananadoption,weadvocatetheestablishmentofanationalregistrywhereclinicsandhospitalswouldberequiredtorecorddonorsandtheirchildren.
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Thishasalreadytakenplaceinseveralcountries,mostrecentlyinSeptember2014inIreland,whichisintheprocessofabolishinganonymousgametedonationandcreatinganationalbirthregisterfordonorsandtheiroffspring.TheChildren'sRightsAlliancewasquotedintheIrishExaminersaying,“Weknowthepaincausedtothemanyadoptedpeoplewhocan'testablishtheidentityoftheirparents.Thisbillwillensurethatdonor-conceivedchildrenwillnotsharethesamepain.”
Therehasbeenmuchdebateinthedonorandadoptioncommunitiesonthe“true”purposeofabirthcertificate.Certainly,itsoriginalandenduringpurposeistokeepaccuraterecordsforthegoodof
publichealth.Fortheindividual,abirthcertificatehasbecomeanindispensableproofofidentityandancestry.ItshouldbeofutmostconcerntoourDepartmentofHealththatbirthcertificatesareservingneitherpurposefortheadoptedanddonor-conceived.
Thetimeforbirthcertificatereformisnow.Unfortunatelyformany,itshouldhavehappeneddecadesago.
CartoonbyJenMoore.Co-WrittenwithKristiLado,BoardMemberPennsylvaniaAdopteeRights(PAR),ContributortoAdoptionTherapy:PerspectivesfromClientsandCliniciansonProcessingandHealingPost-AdoptionIssuesbyLauraDennis.
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Donor Families Connecting: Love or Fear?
Ithinkthatmanyofthechoiceswe'refacedwithinlifeofferusopportunitiestochoosebetweenloveandfear.AfterrunningtheDonorSiblingRegistryfor15years,andfacilitatingtensofthousandsofhalfsiblingand/ordonorconnections,Iseethesechoicesveryclearly.We'vebeenabletowatchsomanyfirst-degreegeneticrelatives,whoareessentiallystrangerstoeachother,decidewhethertoconnect,andthenmaneuverthroughdefiningthisnewfoundfamily.
BrittanandherparentsalongwitheggdonorJoLanaandhertwodaughters,withKatieCouric
GettingtospendtimewithBrittanandherparentsJanetandJimbefore,andaftertheKatieshowwasinspiring.BecauseJimhasageneticconnectiontohisdaughter,IwasmorefocusedonJanet,Brittan'smom,asmanynon-geneticparentsindonorfamiliesseemtostrugglemuchmorewiththeideaoftheirchildrenconnectingwithdonorrelatives.WhenwewatchedJanet,wesawaconfidentandstrongparent.Didshehavefearsandhesitations?Yes,mostcertainly.Didsherealizethatthebenefitsforherchildwouldlargelyoutweighanyconcernsshemighthavehad?Itsureappearsso.
WewatchedJanetbeempoweredasaparent,andwitnessedherconfidence,love,andsupport.Shehad
thegracetonotonlymeet,buttocompletelyembracehereggdonorJoLana(onnationaltelevisionnoless!)Wefelthersenseofgratitude,andwonder,asshelookedintotheeyesandheldthehandofthewomanwhomadeitpossibleforhertohaveherbeautifuldaughter.Therewasnotadryeyeinthehouse.
Whilesomedonoroffspringandtheirparentsareoverjoyedtoconnectwiththeirhalfsiblingand/ordonorfamilies,someparentsseemtostrugglemuchmorewiththeideaoftheirchildrenconnectingwithdonorrelatives.Decisionsaboutdonorconception,includingtheonesaboutconnectingtounknownrelatives,canbecomplicated,butIsuggestwecansimplifythesedecisionsdowntojusttwochoices,loveorfear.
Fearsmightincludecomplicatingyourlife,oropeningyourfamilyuptoasituationthatmightbeoutofyourcontrol.Thetruthisthatasyourchildgrowsupandheadsintotheworld,theseconcerns,aswellasaplethoraofothers,arerealizedregularly,inoureverydaylivesofraisingchildren.Sowecankeepourkidssafe,atallcost,orgivethemopportunitiestoexpandthemselvesintheworld,andlearnabouttheirownpower,strength,andtheirabilitytoopenthemselvesuptolove.
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Certainly,whenfacedwithopeningourlivestounknowngeneticrelatives,parentsmightfeelfear,confusionorworry.Wecanmakechoicessolelybasedonthesefeelings.Wecanletourfeelingsofinsecurityasparentsholdusback.Whatifmychilddoesn'tlikethem?Whatiftheydon'tgetalongorhavemuchincommon?Whatifmychildlikesthembetter?Howwillthedynamicsofourfamilybechanged?WhatifmychildrealizesthatIhaven'tbeena“perfect”parent?Noneofushavebeen“perfect”parents-andmeetingthedonorisn'tgoingto“out”thisfact(thosewithteenagerscancountonthemtodothis!).
Wehavetheopportunityinthesesituations,tomakeourchoicescominginstead,fromaplaceoflove.Wecanchoosetoseetheopportunitiesinreachingoutandconnecting,cautiouslyandcarefully,expandingourchild's,andourownsenseoffamily.Wecanbeopentothisnewideaoffamilyandseehowitactuallymightstrengthenourrelationshipwithourchild,notthreatenitinanyway.Asparents,wecanbeconfidentandstrong.
Willwehavesomefearsandhesitations?Yes,mostcertainly.Butwecanrealizethatthebenefitsforourchildrencanlargelyoutweighanyconcernswemighthave.Therearenoguaranteesofperfectfamilybonding,justasinanyfamily,noteveryonebondsorconnects.Buttheseconnectionsdohavetheabilitytoempowerusasparentsandgiveusanotherplatforminwhichtoshowourchildrenconfidence,love,andsupportwhenmeetingandembracingthisnewfamily.Honoringourchildren'srighttoexplorethesenewhalfsiblingand/ordonorrelationshipscanonlystrengthenourownbondswithourchildren.Andwhenmeetingdonors,havingourchildrenwitnessoursenseofgratitude,canbeaprofoundandlifechangingexperienceforall.
Parentscan,andshouldputtheneedsanddesiresoftheirchildrentoseekoutandconnectwithhalfsiblingsand/ordonors,abovetheirownfears.Thisistheultimatesacrificethatparentsmakefortheirchildren.Itisalsothegreatestgiftwecangivetoourchildren,andtoourselves.
Therearetwobasicmotivatingforces:fearandlove.Whenweareafraid,wepullbackfromlife.Whenweareinlove,weopentoallthatlifehastoofferwithpassion,excitement,andacceptance.Weneedtolearntoloveourselvesfirst,inallourgloryandourimperfections.Ifwecannotloveourselves,wecannotfullyopentoourabilitytoloveothersorourpotentialtocreate.Evolutionandallhopesforabetterworldrestinthefearlessnessandopen-heartedvisionofpeoplewhoembracelife.~JohnLennon
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30k-60k US Sperm and Egg Donor Births Per Year?
In1988theOfficeofTechnologyAssessmentestimatedthat30,000childrenwerebornviadonorinseminationduringtheyear1986/87intheUS.
Morethanaquarterofacentury-andnofurtherresearch-later,'30,000annualbirths'isstilltrottedoutinacademia,lecturesandthemedia.Sometimesthenumberisdoubled,probablytoallowforthepassageoftime,andoccasionallyarangeof30,000-60,000isdeployed.
Yetsomuchaboutdonorinseminationhaschangedduringthistime.Usingeitherofthewholefiguresisscientificallyunjustifiable,andtherangeisjustasflawed.
Themedia,academics,andother“experts”shouldnotbeusingsuchpatentlyerroneousfigures.Rather,theyshouldbenotingthatthereisnoreliablemethodofassessinghowmanychildrenareconceivedviadonorinseminationeachyear.TheyshouldbepointingoutthattheUSAhasnoaccuratetrackingorrecordkeepingfromwhichitispossibletomakeaneducatedassessment.Andplease,themedia(USandinternational)needstounderstandthatmostpeoplethatusedonorspermdonotutilizeIVF!
Insteadofcomplacentlyrelyingonoutdatedbestguesstimatefiguresfrommorethanagenerationago,theyshouldbedemandingreliable,recentfigures.Theyshouldbevoicingoutragethatneitherthe
fertilityindustrynoranyotherentityisrequiredtocollectdataorreportstatisticsonthenumbersofhumanbeingsconceivedusingdonorsperm.
Eventhoughitissometimesreportedthatnumbersofeggdonorchildrenbornaretracked,morethan40%ofeggdonorparentssurveyedbytheDSRtoldusthattheywereneveraskedtoreportthebirthoftheirchild,andmanyhadneverdoneso,leadingtoincompleteeggdonorbirthtrackingaswell.Thisisinstarkcontrastwithlivestockinsemination,whichismuchmoretightlyregulatedandsurveyed.
Thedonorinseminationlandscapehaschangedsignificantlyfromthe1988report.In1986almostallrecipientswereheterosexualmarriedcouples;nowadays,straightmarriedrecipientsmakeupasmallminority.ParentsontheDonorSiblingRegistryare50%singlewomen,33%inLGBTfamiliesandnowlessthan20%arestraightcouplesfacinginfertility.Whereasin1986themajorityofdonorswererecruiteddirectlybyfertilitydoctors,(orfertilitydoctorsthemselves),mostdonorsarenowspermbankrecruits.
Thenumberofspermbankshasrapidlyincreasedsince1988,ashasthenumberofdonors.Butthegreatestchangeofallistheopportunityforkinshipacquaintance.In1988itwasessentiallyfantasyfordonorsoroffspringtothinktheywouldgettoknowoneanother.Now,inthegenerationfollowingtheadventoftheDonorSiblingRegistry(DSR),andwithDNAtesting,suchknowledgeisalmostanexpectation.Onlyonethingremainsthesame:thegenerallackofcomprehensivemedicalandgenetictestingofdonors,oranymandatoryrequirementtodosobeyondtestingforSTD'sandasmallhandfulofotherdiseaseslikeTaySachs.Theresultisthatsomebanks,testsomedonors,forsomediseases.
Overthelastfifteenyears,theDSRhascollatedthemostcomprehensiverecordsthatcurrentlyexistintheUSA.With47,600worldwidemembers,includingrecordsofover2,400donors,italsoincludesdetailsofhundredsofworldwidespermdistributionfacilities.However,theserecordsareveryincomplete,asallhavebeenobtainedviavoluntaryregistration.
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Forseveralyears,theDSRhasbeenapplyingpressuretospermbanksforthemtomaintaintheirownaccuraterecordkeepingsystem,butprogressinthatdirectionisslow.Andevenifindividualspermbanksdidcreateproperrecords,inorderforthemtobeaccurateandreliabletheywouldneedtobecollatedandintegratedwiththerecordsofeveryagencythattradessperm,asresearchhasshownthat27%ofdonorsdonatetomorethanoneclinic.Thiswouldrequirethatthewholeindustrybeaccountabletoonebody.
Thisisacalltothosequotingthatone-timeestimateof30,000,andtothoseconcernedaboutthepitifullackofoversightwithintheUSspermdonorindustry,tospeakupaboutthelackofreliableinformation
withinthepublicdomain.Weneedtodemandthatfederalmoneybeallocatedtoresearch,overseeandregulatethisindustry,andtodoitinathoroughandcomprehensivemanner.
Inthemeantime,everyoneusingthesefiguresshouldacknowledgethattheyare28yearsoutofdate,andeventhentheywereonlyroughguesstimates.
CartoonbyJenMoore.
*www.DairyCattleRegistry.com,2015.
**www.cattlemax.com,2015.
***USDAReport,2012,alsohttp://www.cattletoday.com/archive/2006/May/CT478.shtmlArticleonPercentagesofDairyCattleConceivedofAI.
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Grandparents via Donor Conception
Therearesignificantcross-generationalrelationshipsthatgametedonationhasengenderedthathaven'tyetbeentalkedabout.
Asdonorconceivedpeopleandtheirdonors(akabiologicalmothersandfathers)arefindingeachothermoreregularlythroughtheDonorSiblingRegistryandthroughDNAtestingwebsites,therearemembersofa
thirdgenerationthatarealsoconnecting-thegrandparents.
Donorsarefindingthatwhentheyconnectwiththeiradultdonorconceivedoffspring,thatmanyofthoseoffspringarenowparentsthemselves.Thesedonorsnowhavetheopportunitytonotonlymeettheirbiologicalchildren,butalsoestablishrelationshipswiththeiryoungdonorgrandchildren.Andwhobettertolavishaffectiononachild,thananewlydiscoveredgrandparent?
Inaddition,parentsofdonorsarelearningthattheyhavebiologicalgrandchildren,notasaresultofthetypicalpatternoftheirchildrenraisingchildren,butratherbecausetheirsonordaughterhasbeenaspermoreggdonorsometimeinthepast.OntheDonorSiblingRegistrywehaveparentsofdonorswhoareinterestedinconnectingwiththeirgeneticgrandchildren.
Some,whosechildrenarenowdeceased,arelongingtoknowiftheirchildrenhaveanychildrenouttherebornfromthedonations.Theverygoodnewsforthedonorconceivedcommunity,isthatthesenewgrandparentsareoftenwelcomingtheirkinwithopen
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armsandhearts,asformanyofthesedonor'sparents,thesedonoroffspringwillbetheironlygrandchildren.
Sometimes,contactcomestoolate.Onedonorconceivedwomanrecentlyexplainedtheheartacheoflearningthatherbiologicalgrandfatherhadrecentlypassedaway:
Ifoundoutthismorningthatmypaternalgrandfatherthroughmydonorunexpectedlypassedaway.Ifoundmybiologicalfatherearlierthisyearthrough23andmeandhavebeenslowlyestablishinganemailrelationshipwithhim,butthingshadnotyethadtimetoreachapointwhereitwouldbetherighttimeformetomeetthatpartofmyfamily.Iwillnevermeetthatgrandfathernow.IhavetothinkthatifASRMandthefolksinvolvedinanonymousdonationunderstoodwhatanonymousdonationreallymeant,thenitwouldstop.Therewasnoreasonformenottomeetmygrandfather.Hewasinhis80s.I'minmy30s.Thereshouldhavebeenplentyoftime--andtherewouldhavebeen,ifIhadhadarighttoknowmyidentityfrombirth,andifusingknowndonorshadbeenrequiredwhenIwasconceived.Ican'tbelievethateveryday,doctorsarecreatingmorepregnanciesthisway.Itblowsmymind....Itjustblowsmymind.
Thesenewfamilialconnectionsarereachingbeyondthedirectlinktoahalfsiblingorageneticmotherorfather,andformanydonor-conceivedpeople,connectingtotheirgeneticgrandparentsgivesthemamoreconcretesenseoftheirfamilialline,theirculturalhistory,andtheirorigins.
Forsomedonor-conceivedpeoplelikeSusan,beyondtheimportanceofmeetingherowngeneticfather,wastheknowledgethathersonwouldgrowupknowingtwoadditionalgrandparents.Sheexplains:
ImyselfrealizedthatIwasnotmyDad'sbiologicaldaughterwhenIwastenyearsold.Iwonderedfromtimetotime.Whowasthemanwhohaddonatedhalfmygenetics?Therewereseasonsinmylifewhenthisquestionplaguedme,andothertimeswhenitwasmerelyapassingthought.ItwasnotuntilIfoundoutthatIwaspregnantthatIfeltanyrealregretatnotknowinghisidentityandeventhenitwasonlybecauseIwouldnothaveacompletemedicalhistoryformychild.
WhenIdidfinallymeetmybiologicalfatheritwasnotaheartwrenchingoverthetopexperience,insteaditwasasenseofdeepcalm;asthoughaveryimportant
piecewasfallingintoplace.Imagineyouhaveajarfullofwaterandsandthatyouhaveshakenuntilitwascloudy,andthenimagineyousetthejardownandinstantlythesandsettlesandthewaterclears.Thatishowitfelttomeethim.Itwasanareaofmylifethathadalwaysbeenunclearandrathersuddenlyitwastransparent.Herewasamanwithmynoseandmyhands,anartistandanempath.
Asamothermyselfnow,myfeelingshavechangedandmyprimaryjoyisinthefactthatmysonhastwomoregrandparents,achildcanneverhavetoomanygrandparents!ToloveandbelovedbysomanyissuchagiftthatIamhumbledbydaily.AsItoldmybiologicalfatherandhishusbandwhentheyaskedmehowIfeltthefirsttimewemet,Iamthemandtheyareus,forbetterorworse,we'refamily.I'msogratefulwelandedsafelyonthesideofbetter.
Andforsomedonors,meetingtheirgrandchildrenandhavingtheopportunitytoparticipateandbeapartoftheirlivesisalife-alteringopportunity.RoberttellsusaboutmeetingSusanandhisgrandson:
Imadecontactwithmydaughter,whosaidthatshehadbeenlookingformesinceshewasachild,andshewantedtomeetmeandtointroducemygrandson.Werecognizedeachotherimmediately,onfirstmeeting,andIfeltafamiliarityandaffectionthathasgrownwitheachsubsequentvisit.Ifeelincrediblylucky.
In2013weconductedandpublishedresearch*ontheparentsofspermandeggdonors.Wewantedtoknow
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abouttheirexperienceswithconnectingtochildrenbornfromtheirchildren'sdonations.Weaskedrespondentstoindicatetheirthoughtswhentheyfirstlearnedoftheexistenceofadonorconceivedgrandchild.Allbutafewoftherespondentswantedtolearnmoreabout,ortohavesometypeofcontactwith,thechild.Forinstance,68%“wantedtolearnmore”and42%“wantedtomeetthemassoonaspossible.”
Weaskedforthemainreasonforreachingouttotheirdonor-conceivedgrandchild.Thirty-ninepercentofrespondentsindicated,“SincetheywerecreatedwithmyDNA,thechildispartofme”asthemainreasontoreachout,and“Theyaremygrandchildren”wasselectedbyanother33%.
MyownsonRyanwasgiventheopportunitytomeethisbiologicalfatherandgrandparentswhenhewas15.Becauseofthis,hegainedtwoadditionalgrandparentswholovehim,andwhohaveenrichedhislife.Weareallextremelythankfulthatwe'vehadtheopportunitytoshareourliveswitheachotherfor
thepasttenyears.BothRyanandIcannotimaginenothavinghadthisbranchofourfamilyasapartofourlivesforthepastdecade.
Atonepointearlyonthough,Ryan'sdonor-grandmothersharedwithmethatwhileoverjoyedaboutbeingabletoestablishthisnewfamilialrelationshipwithhergrandson,shedidfeelsomesadness,andactuallyneededtogrieveforthemissedfirst15yearsofRyan'slife-thefirststeps,birthdaysandmilestonesnowlonggone.
Wecanonlyhopethatthereproductivemedicineindustryislisteningtothesestories,andwillstopworkingsohardtokeepthesegeneticrelativesfromknowingeachother.
*TheJournalofFamilyIssues,DOI10.1177/0192513X13489299May2013:ANewPathtoGrandparenthood:ParentsofEggandSpermDonors.DianeBeeson,PatriciaJennings,WendyKramer.Otherreading:TheVitalImportanceoftheGrandparent-GrandchildBond
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Donor Conceived People and the Reproductive Medicine Industry Disconnect
It'saninnatehumandesiretowanttoknowwherewecomefrom.It'simportantforbothourmedicalandpsychologicalwellbeingtoknowaboutourbiologicalfirst-degreerelatives,ourancestry,ourmedicalbackgrounds,andourgenetics.
Whiletheremaybesomedonor-conceivedpeoplewhodon'thaveadesiretoseekouttheirhalfsiblingsorbiologicalparents(justasinadoption),manymoredoindeeddesiretosearchforandtofindtheirrelatives.Someformedicalreasons,andsomealsofeeladeepandpainfullossfrombeingdisconnectedfromtheirgenetickin.RebeccaH.explains(inthebookVoicesofDonorConception:MovingBeyondSecrecyandShame):
Myfeelingsaredifficulttoexplaintopeoplewhotaketheirrootsforgranted.Anadoptedpersononcedescribedthesensationofwhatisnowtermed
'genealogicalbewilderment'ashavingtodrivethroughlifewithoutaroadmap.Ifindittobeanaptdescriptionofmysituation.PeoplewhoknowbothoftheirbiologicalparentsfindithardtograsptheenormityofwhatIammissing.Simplyhavinginformationaboutthesortofpeopletheyare,andwhatthingstheyarecapableofdoing,createsabaselinethatyoudon'trealizeiscomfortingunlessyouhavetolivewithoutit.
ForthousandsontheDonorSiblingRegistry,connectingwithformerlyunknownbiologicalrelativeshasleadtobettermedicalcareandscreenings,agreatersenseofself-understandingandhasbeenaveryimportantcomponentofidentityformation,andformanydonoroffspring,longbeforetheageof18.Properacknowledgement,respectandattentionforthepeoplewhoaresufferingmostwiththislackofgeneticknowledge,bothpsychologicallyandmedicallyisdesperatelyneeded.
Donorconceivedpeoplefollowinthepathofadopteesinthearenaofdisclosure,alongwiththerighttosearchforandknowabouttheirorigins.TheAdoptionCongress(2007)statesthefollowingintheirAssistedReproductionTechnologyStatement:
TheAmericanAdoptionCongressbelievesthatallindividualswhosegeneticandbiologicaloriginsaredifferentfromthoseoftheirlegallyrecognizedfamilieshavetherighttoknowthoseorigins.Thisincludespeoplecreatedthroughthedonationorsaleofeggsorsemen,thetransferofembryos,gestationalsurrogacies,oranyotherreproductivetechnology.Knowledgeofone'soriginscanbevitaltothepsychologicalandphysicalwellbeingofhumanbeings.Denyingapersonthisinformationcanhavepotentially
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seriousconsequencesuponthatperson'sfamilyrelationships,healthandreproductivechoices.
OntheDonorSiblingRegistrygroupdiscussionpage,onedonor-conceived(D.C.)adultexplains:
Knowingthatthefertilityindustryprofitedfromtheactofdeliberatelydisconnectingmefromhalfofmybiologicalfamilyhasleftmewithaconstantsenseofhavinghadmyrightsviolated.
SomuchhasbeenwrittenbyD.C.peopleaboutwhylosingaconnectiontoaparentthroughparentalromanticdecisionsandchanceisnotthesameashavingthatconnectionseveredbyanindustrythatbrokeredyoursale.D.C.peoplecanbegratefultoexistandtohavebeenwantedbytheparentswhoraisedthem,andstillfeelpain,frustration,andangeraboutthecircumstancesoftheirconception.IwishthattheparentsofDCpeoplewouldstopseeingtheirchildren'spain,frustration,andangerasabadthingorasanundesirableresult.
Pain,frustration,andangerarenaturalandgoodresponsestoinjustice.Sorrowandgriefarenaturalandgoodresponsestorejectionbyabiologicalparent.Ourangerandourgriefcanbefueltoadvocateforregulationsthatrespectourrights.Ouremotionsarenottheproblem;theproblemishavinghumanbeingsbeingtreatedasaproductbythefertilityindustry.
Donor-conceivedpeoplearebeingdeniedthebasicrighttoknowtheirorigins,andhavebecomeavoicelessminorityinoursociety,withoutthenecessaryinformationtomakeinformedandcompetentdecisionsabouttheirownpsychologicalandmedicalcare.TheUSSurgeonGeneralreportsontheirwebsite:
Arecentsurveyfoundthat96percentofAmericansbelievethatknowingtheirfamilyhistoryisimportant.”TohelpAmericansfocusontheimportanceofknowingfamilyhealthhistory,TheUSSurgeonGeneralalongwiththeDepartmentofHealthandHumanServicescreatedthe“FamilyHealthHistoryInitiative.”Thewebsitenotesthat,“Tracingtheillnessessufferedbyyourparents,grandparents,andotherbloodrelativescanhelpyourdoctorpredictthedisorderstowhichyoumaybeatriskandtakeactiontokeepyouandyourfamilyhealthy.
TheAmericanMedicalAssociationagreeswiththeimportanceofknowingyourfamilymedicalhistory:
Gatheringacompleteandaccuratefamilymedicalhistoryisextremelyimportantasgeneticmedicineexplainsmorediseases.
InGeneticsHomeReference,theNationalLibraryofMedicine'swebsiteforconsumerinformationaboutgeneticconditionsandthegenesorchromosomesrelatedtothoseconditions,hasthistosayabouttheimportanceofknowingyourfamilyhealthhistory:
Afamilymedicalhistoryisarecordofhealthinformationaboutapersonandhisorhercloserelatives.Acompleterecordincludesinformationfromthreegenerationsofrelatives,includingchildren,brothersandsisters,parents,auntsanduncles,niecesandnephews,grandparents,andcousins.
Familieshavemanyfactorsincommon,includingtheirgenes,environment,andlifestyle.Together,thesefactorscangivecluestomedicalconditionsthatmayruninafamily.Bynoticingpatternsofdisordersamongrelatives,healthcareprofessionalscandeterminewhetheranindividual,otherfamilymembers,orfuturegenerationsmaybeatanincreasedriskofdevelopingaparticularcondition.
TheCentersforDiseaseControlandPreventionwebsitesays:
Familyhealthhistoryisausefultoolforunderstandinghealthrisksandpreventingdiseaseinindividualsandtheircloserelatives.
TheUSSurgeonGeneral,TheCDC,TheNationalLibraryofMedicine,TheUSDepartmentofHealthandtheAmericanMedicalAssociationallstresstheimportanceofknowingone'sfamilyhealthhistory.AndtheAmericanAdoptionCongressadditionallyacknowledgesboththemedicalandthepsychologicalimportanceofknowingaboutone'sorigins.
Adonor'smedicalprofile(sometimesincludedwhenapersonbuysspermoreggs)isasnapshotinthelifeofahealthyyoungdonor,anddoesn'treflectwhathappensthenextyear,orafterwardstoadonororhisorherimmediatefamily(siblings,childrenorparents).Additionally,manymedicalandpsychologicaldiseasesareadult-onsetsodonorscouldn'tpossiblyreportthematthetimeofdonation.Somedonorsarenotsureabouttheirrelative'sdiseases,andsomearenothonestwhenfillingoutthemedicalprofile,afraidthatiftheytellthewholetruth,theywillnotbeacceptedintothedonorprogram.
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TheDonorSiblingRegistry'sMedicalPagelistshundredsofreportedmedicalissuesfromdonor-conceivedpeople,theirparentsandthedonors.Someofthesemedicalissues,likeHypertrophicCardiomyopathy(HCM),aseriousheartcondition,havebeensharedinlargehalfsiblinggroups.ThesharingofthismedicalinformationamongsthalfsiblingfamiliesontheDSRhassavedlives.
Researchshowsthat84%ofsurveyedspermdonorsand97%ofsurveyedeggdonorssaythey'veneverbeencontactedforanymedicalupdates.23%ofthosespermdonorsand31%ofthoseeggdonorssaidthattheyfeltthatthey,orclosefamilymembers,hadmedical/geneticissuesthatwouldbeimportanttosharewithfamilies.
Oneformerspermdonor,nowadoctor,saidinalettertotheJournaloftheAmericanMedicalAssociation(theletterwasneverpublishedbyJAMA):
ThispracticewasfirmlyentrenchedinthemedicalcommunitylongbeforetheDNArevolutionprovidedthetoolstodiscovergeneticrelativesandthebasisofmanyhumandiseases.Ourincompleteknowledgeofthesegeneticfactorsimpliesthatassessingthefamilyhistoryofailmentsisstillanessentialelementofmedicaldiagnosis.Alsoignoredintheseearlierprocedureswasthefactthatthechildrenresultingfromanonymousgametedonationweredeprivedoftherighttoknowhalfoftheirancestry,whichisnow
recognizedasafundamentalhumanright.Frommyviewpoint,medicaldoctorswhotooktheHippocraticoath,andwhowereeitherspermoreggdonors,aremorallyobligatedtoallowtheirbiologicalchildrenaccesstotheirfamilymedicalhistory.
Somedonorssaythattheyhavecalledinanewmedicalissuetothebankorclinic,andhavebeenpromisedthatitwouldbepassedalongtofamilies-butwhenthefamilieshavecalledintheyhavebeentoldthatnomedicalissueshaveeverbeenreported.Thefactthatfertilityindustryeconomicswouldsubvertthemedicalandpsychologicalcareofadonorchildisunconscionable.
Inadditiontoconductingandpublishingmanyresearchstudies,theDonorSiblingRegistrynowhasmorethan47,300donors,parentsandoffspring,manyofwhomhavesharedtheirstories.Whereistheattentionfromthereproductive,medicalandpsychologicalindustries,andtheoversighttoensurethatalldonor-conceivedpeoplehavetherighttotheirownorigins,genetics,ancestryandpersonalmedicalhistory?
CartoonIllustrationbyJenMoore,OutreachDirector,DonorSiblingRegistry,andmothertotwoteen-ageddonor-conceivedsons.http://www.hhs.gov/familyhistory/FamilyHistoryisImportantForYourHealthhttp://www.cdc.gov/genomics/public/file/print/FamHistFactSheet.pdf
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The Voting Booth of Sperm and Egg Donor Anonymity
“NobodyaskedmewhatIwanted,”saidonedonor-conceivedyoungwomaninher20s.“Ijustwishthe(spermandeggbanks)wouldconsiderthisfromthechild'spointofview.”
AspiritedDonorSiblingRegistrygroupdiscussionbeganaftermyrecentHuffingtonPostblogswerepublished.
Parentsofdonor-conceivedchildrenwereoverwhelminglyonthesideofdonorkidshavingaccesstotheirancestral,medicalandgeneticinformation,withonedissenterparentpointingoutthatshefearedthatthespermsupplywould“dryup”ifanonymousdonationswerebanned.
Thisisamythperpetuatedbythereproductivemedicineindustryandthemedia.Infact,since2005,whentheUKbannedanonymousdonations,orrathergaveadonor-conceivedchildtherighttoknowdonorinformationatage18,theUK'sHFEAwebsitereportsthattheirspermandeggdonornumbershavegrownsignificantly.Thereasonswhycouldbeinpartbecausethestigmaandfearsoftheunknowninpastanonymousspermdonationhavedissipated,becausedonorbanksmayhavesteppeduptheirdonoroutreachprograms,andperhapsbettereducationaboutdonatinghasspurredanewtypeofmaturedonorwhocanrespecttheneedtobeknownbyanychildrenhehelpstocreate.
Let'sjustsaythatendingdonoranonymityintheUSdidresultinadecreaseindonors.Doestheendalwaysjustifythemeans?Wecurrentlydonothaveenoughorgandonorseither,butdonotresorttounethicalmeasurestoprocurevitalorgans.So,aswithsperm
andeggdonors,theremightnotbeenoughforeveryonewhowouldlikeachild.Butthatcan'tjustifyanonymousdonation.Weneedtostopsacrificingtheneedsofdonor-conceivedpeopleforthe“reproductiverights”ofparents,atanycost.
Intherelevantdiscussionondonoranonymity,whilethemajorityofdonor-conceivedparentsinthediscussionwereinsupportofanyandallinformationdonorchildrenwantedtoseekout,oneparentclaimedthather11yearoldwantednothingtodowithknowinghisgeneticrelativesorinformation.
Interestingly,onedonorconceivedadultthensheepishlyadmittedthatshehadalwayswantedtofindhergeneticrelatives,butshehadbeenafraidtotellhermotherforfearofupsettingher.Severalparentsthenechoedthesamesentiments,andonesaid,“Childrenwilloftenemulatebehaviorthattheyfeelpleasestheparent,whiletheirtruefeelingscanbeburiedunderthebasicneedtobeaccepted.”
Afteraheartfeltdiscussion,thegroupcametotheconclusionthatALLchildren,especiallydonorconceivedkids,absolutelyhavetherighttoknowwheretheycomefrom,nomatterwhattheprioragreementshavebeenwithanonymousdonors.Althoughdisclosure,or“telling”maybethefirststepwithdonorchildren,it'sjustthebeginningoftheconversation.Itthenbecomesimportanttobothhonorandsupportanycuriositiesthatachildhastoconnectwiththeirfirst-degreegeneticrelatives.Itshouldbemadeveryclearthatthetopicisopenfordiscussionandanyfearsthataparentmighthaveaboutconnectingwithunknowndonorrelativesshouldbeplacedontheirbackburnerand/ordealtwiththroughcounseling.
Someparentsstatedthatsincethattheymadeanagreementtouseananonymousdonor,theyfeltethicallyboundtostayawayfromtryingtogaininformation,whileseveraldonorconceivedchildrenrebuttedthattheseprioragreementsweremadeonlybetweenthedonor,theparents,andthespermbank--notthechild,whohasneverhadavoteinthematter.
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Co-authorJenMoore,whose2boysweretoldthattheyweredonorconceivedin2014,addedtothediscussion,“I'vebeenaskedrepeatedly:'WillIevermeetmydonor?'and'WillIevergetapictureofmydonor?'It'sreallysadforaparenttoknowthatthereisnowaytoanswerYESingoodconscience.”
InaDSRresearchsurveyof751donor-conceivedoffspring,83%ofthemwhoarenotincontactwiththeirdonors,wishtobe.Inaddition,morethanthreequartersofallsurveyedoffspringstronglyrecommendthatparentsusean“open”or“willingtobeknown”donor.
Tomakeacaseforopendonors,theDonorSiblingRegistryresearchreports[LINK]thatover94%ofsurveyedspermdonorswereopentocontactwiththeoffspringtheyhelpedtocreate.Sadly,somecannotgettheirspermbankstoeventellthemtheirowndonornumbersorreleasetheirinformationtosearchingchildren,evenwhenbothsidesareactuallyaskingtobeconnected.
Nomatterhowlongthespermbanksdesperatelyhangontotheideaofanonymousdonation,donorswon'tbeinhiding,bychoiceorotherwise.YanivErlich,Ph.D.,anassistantprofessoratColumbiaUniversityandacorememberoftheNewYorkGenomeCenter,surmised,“Therecentestimatesarethat3millionpeopleweretestedwithFamilyTreeDNA,AncestryDNA,and23andMeforthefullautosomaltests.Thenumberisgrowingquickly,and23andMeaddedhalfamillionpeopleinthelastyear.It'sbeenreportedbytheentitiesthatoperatethirdpartywebsitestoanalyzegenomicinformation,thatthecompaniesareexperiencedadoublinginthenumberofparticipantseachyear.”
WhilenoneofthemajorsitesreportingissuingfutureprojectionsonDNAtesting,usingYanivErlich'sinformation,combinedwiththecorrelatednumbersreportedrelativeto23andme.com[LINK](300,000genotypedpayingcustomersinlate2013,650,000inearly2014,andover1,000,000inMay2015),theestimatedpopulationsthatcouldhavetheirgenotypeinsomesystemby2020couldexceed14millionormore.
Tobringthingsintoperspective,afirstcousingeneticrelationshipon23andme.comcanbebetweena7%-13%geneticmatch.Itwouldbeextremelydifficultpastthisleveloftransparency,withnamesandemails
beingtradedalongwithfamilyhistories,foranydonortoremainanonymous.
AuthorandlawprofessorJulieShapiroalsochimedin,respondingwithherownblogarticleentitled,“FacingtheEndofAnonymity.”Shewrites,“Itseemstomethatquestionsaboutthevalueofanonymity,andthewaysinwhichthelawshould/shouldnotprotect/promoteitarebeingoutflankedbyreality.”Shegoesontofirmlystatethatnoone(spermoreggbanks)cantrulypromiseanonymityanymore.“It'sirresponsible,andperhapsevendishonest,todoso.”
Still,spermandeggbanks,whohaveenjoyedfreereigntogiveandtakeawayinformationfromdonorchildren,seemtoremainblind,deafanddumbtowhatisinfrontoftheirfacesrelatedtotheadvancesofpsychology,sociologyandgeneticscience.Wehavetowonder-whentheAmericanSocietyofReproductivemedicinewillstartinvitingdonorconceivedpeopleintothediscussionforsettingpoliciesandrecommendationsfortheirindustry?Howcanitbethattheverypeoplewhoarebeingcreatedbythesereproductivemethodologiesstillhavenovoiceinthematter?
Regardlessofthedimminghorizononanonymitybroughtbytheready-packagedrealitiesofDNAgenealogy,thereremainstheplaintivepleaofthelong-ignoreddonorchildwho,forgenerations,hasbeenkeptinawonderingstate--wanderingbetweenwhattheyknow,whattheycanfindoutbydigging,andwhataboutthetheirancestral,medicalandgenetichistoryisbeinghiddenfromthem.Theyarelefttowonderwhytherightsofthespermbanksandclinics(tomakemoney)andtheparents(tohaveachild)andthedonors(whoatthetimeagreedtoanonymity)alwaystrumpedtherightsofdonor-conceivedpeopletoknowwheretheycomefrom?It'shightimetohumanizethedonorconceivedandallowthemtheirownspaceinthevotingboothofdonoranonymity,withthe“polls”alreadyshowingasweepingvictoryinfavorofknowndonors.
Co-writtenwithJenMoore,OutreachDirector,DonorSiblingRegistry,andmothertotwoteen-ageddonor-conceivedsons.CartoonIllustrationalsobyJenMoore
ReferencesDonorSiblingRegistry(DSR)(2015).15thYearInformationBooklet.RetrievedonlineJuly17,2015athttps://www.facebook.com/download/395409610650666/Law%20School%20Powerpoint%20FINAL.pdf
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2011HumanReproduction:Offspringsearchingfortheirspermdonors:howfamilytypeshapestheprocess.Authors:DianeBeeson,WendyKramer,PatriciaK.Jennings.doi:10.1093/humrep/der202
JulieShapiro,Blog,
https://julieshapiro.wordpress.com/2015/08/09/facing-the-end-of-anonymity/23andMeBlog,byAnneWojcicki,http://blog.23andme.com/news/one-in-a-million/1.ExcerptsfromaninterviewwithYanivErlich,PhD,AssistantProfessorofComputerScience,Columbia
University;CoreMember,NewYorkGenomeCenterNewYork,NY2.HowManyPayingCustomersdoes23andMehave?AlexKomenko,http://www.quora.com/How-many-paying-customers-does-23andMe-have
3.AveragePercentDNASharedBetweenRelativeshttps://customercare.23andme.com/hc/en-us/articles/202907170-Average-percent-DNA-shared-between-relatives
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Sperm Donors Who Wish to Remain Anonymous Just Shouldn't Donate.
MysonRyanandIwerecontactedbyFamilyTreeDNAin2004,astheythoughtthattheirnewcommercialDNAtestingcapabilitiesmightbeusefultoRyan,andtotheothersinourcommunityofdonorconceivedpeopleattheDonorSiblingRegistry.Atthattimewethoughtitmightbepossibletofindoutmoreaboutone'sancestryandcountriesoforigin.Ryanwasexcitedtolearnmoreabouthis“invisible”paternalancestry,soquicklyagreedtoswabhischeek,sendinhissampleandseewhathemightlearn.Hebecametheoneofthefirstdonor-conceivedpeopletothrowhisDNAintoapublicDNAdatabase,makinghimselfavailabletoconnectwithpreviouslyunknowngeneticrelatives.
Atfirst,hedidlearnabitmoreabouthispaternalancestry,specificallyaboutcountriesoforigin.HelearnedthathewasmostlyEnglish,withsomeIrishandevenabitofIcelandic(whichhethoughtwasprettycool).Healsomatchedwithpeopleonhis12and25YChromosomeDNAmarkers,whichmeantthatcommonancestorsrelatedthemfromhundredsoreventhousandsofyearsago.Andfor9monthshewascontentwiththatlittlebitofinformation.
NinemonthsaftersubmittinghisDNA,hehadhisfirstmatchesonthe37Y-DNAmarker.Hematchedwithtwomen,samelastname,whodidn'tknoweachother,butwhohadfiguredouttheirsamecommonancestorwholivedinthe1600's.BecauseRyanmatchedwithboththesemen,astheymatchedwitheachother,itwasdeterminedthatRyanalsohadthesamerelativefromthe1600's.Thetwomen,andthiscommonancestorallhadthesamelastname.Itwaswiththislastname,andabirthdatefromthedonorprofile(thatthedonorfilledoutatthespermbankwhenhedonated),thatwithindays,(withGoogleandapublicrecordsdatabase),wefiguredoutwhomyson'sbiologicalfatherwas.Contactwasmade,andour
familyinstantlyexpanded.Whenourformerlyanonymousdonorwasgiventheopportunitytoknowmyson,hegladlyaccepted.ManydonorssincethenhavealsoconnectedwithoffspringonDNAsites,aswellasontheDonorSiblingRegistry.
WiththeincreasedvolumeinthegeneralpublicswabbingorspittingforDNAdatabases,nowwhendonorconceivedpeoplespitintoacylinderorswabtheircheekandsenditintocommercialDNAtestingsiteslikeFamilyTreeDNAor23andme,thereisaverygoodprobabilitythattheywillconnectwithdistant,orevencloserelatives.Thisincludeshalfsiblingsandorgeneticmothersandfathers,sonsanddaughters.Donoroffspringhaveeveryrighttosearchfor,andtomaketheseconnections,ofcourserespectingtheboundaries,wishes,andprivacyofthosetheyconnectwith,likeanyotherpersonreachingouttotheirunknowngeneticrelatives.
Fordecades,therightsofdonorstoremainanonymoushavebeenfirstandforemost.Thereproductivemedicineindustryhasworkedveryhardtokeepdonoroffspringfromknowingtheirgeneticparents.Somebanksandclinicsevenrefusetogivedonorstheirowndonornumbers,makingitdifficulttomakemutualconsentcontactontheDonorSiblingRegistry.Somebanksdonotevenconnectdonorsandoffspringwhobothcallintotheclinictorequestthattheybeputintouchwitheachother.Evenbanksandclinicswith“open”donors,onlysometimesconnectoffspringwithdonorsatage18,astherearenoguarantees.
InthisdayandageofcommercialDNAtesting,here'smyadviceforprospectivesperm(andegg)donors:ifyoudon'twanttobeknowntoyouroffspring,justdon'tbecomeadonor.Becauseevenifdonorsdon'tsubmittheirownDNA,chancesarethatsomeknown,ordistantunknownrelativesoftheirs,havespitorswabbed,andthismakesdonorsveryfindable.Mysonmayhavebeenthefirsttolocatehisdonorwiththisnewmethodology,buthecertainlywasn'tthelast.
Ifyouareaformerdonorandthinkyou'llneverbefound,itmightbetimetostarteducatingyourselfaboutwhatdonorconceivedoffspringarelookingfor
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whenreachingouttotheirgeneticmothersandfathers.Wehaveheardfromthousandsofthem,ontheDSRandthroughresearchprojectsandweknowthattheyarenotlookingtoinvadeordisruptyourlife.Theyarenotlookingforanactiveparent.Theyarenotlookingformoney.Theyjustwanttoknowwheretheycomefrom-theirgeneticandmedicalhistory,alongwiththeirancestry.
Someoffspringdolongtomeetandtoknowtheirgeneticparents.And,ifrelationshipsevolveafterconnecting,thenthat'sicingonthecakeforallinvolved.It'snowtimethattherightsofdonorconceivedpeopletobecuriousabout,searchfor,andconnectwiththeirfirstdegreegeneticrelativesareacknowledged.
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Roots and Wings for Donor Offspring
Thereareonlytwolastingbequestswecanhopetogiveourchildren.Oneisroots;theotherwings.
ThisHoddingCarterquotehasbeenthetaglineonmyDonorSiblingRegistrye-mailsformanyyearsnow.ThisweekIspokewithaneggdonormomwhoquestionedmeaboutit,askingifIinterpretedthequoteasmeaningthatdonorconceivedchildren's“roots”arefromthegeneticparent(s)andtheparentsthatactuallyraisethechildsupplythe“wings,”sayingthatshefeltlikeshewasbothtoheradultson.
Tome,thequotemeansthatweparentsoweourchildrenboth:rootsandwings.It'snotjustoneortheother.Parentswhoraisedonorchildrendoprovidebothrootsandwingsintheformoffamily,securityandinstillingourchildrenwiththeconfidenceandthetoolstoflyontheirownoneday.Alsothough,wedoneedtoacknowledgethe“other”significantpartoftherootsthatwemightnotbeabletosupplyandthatmightbeveryimportanttoourchildren.
Sosure,parentswhoraisechildrencertainlydoprovideboth.But,thereisanotherpersonwhoalsocontributedtoourchildren'sroots:halftheirancestry,DNA,andmedicalhistorydocomefromtheotherbiologicalparent.
Onceagain,wehituponthenotionthatsomeparentsliketothinkthatthedonorisjusta“pieceofgenetic
material”oronlya“donatedcell.”Butinfactformanydonor-conceivedpeople,it'smuchmorethanthat.TheyhaveanunknownpersonwhocontributedhalftheirDNA,theirancestryandtheirmedicalbackground:threeveryimportantpiecesthatcontributesignificantlytowhoapersonis.
Justlikeinadoption,somekidsarenotverycurious,andsomeareextremelycurioustoknowaboutthedonor.Andasinadoption,familiesneedtobesupportivewithwhichevertypeofchildtheyget.Oryoumightendupwithresentfuloffspring;angeredthatkeepingthesecretwasmoreimportantthantheirrighttothetruth.Or,fearfuloffspringprotectingtheparentsthathaven'tyethealedfromthepain/shameofinfertility.That'snottheirburdentocarry.It'snottheirshametocarryon.ToomanyoffspringcometotheDonorSiblingRegistryinsecrecy,behindtheirparents'backs,afraidofhurtingorangeringthem.
Secrecydoesimplythatthereissomethingshamefulaboutthemethodologyofconception.Donorconceptioncanbetalkedaboutopenlyandhonestlybetweenlovingparentsandtheirdonorchildren.Tellingisjustthebeginningthough.Andhavingacuriouschildinnowaylessonsyourimportanceorsignificanceasaparent.Itisaninnatehumandesiretowanttoknowwherewecomefrom.
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The Ethical Sperm Bank: An All-Open Sperm Bank. An Idea Who’s Time Has Come.
Aculturalphenomenonisgrowingthesedaysintheworldofgametedonation.Thevoicesofthedonor-conceivedaregrowinglouderandclearer,andthevastmajorityexpressthatknowingorhavingknowntheidentityoftheirdonorsisbetterthannotknowing,psychologically-speaking.Fromactivelylisteningtothem,welearnthathavingacompletesenseofone'sbiologicaloriginsfostersamorewholeidentity,whichcanpositivelyimpactself-confidence(nottomentiontheimportanceofknowingone'sfamilymedicalhistory).Theyalsopreferknowingandconnectingwiththeirhalf-siblings,justasanyonewouldwanttoknowtheirfirst-degreegeneticrelatives.Furthermore,thevastmajorityofsurveyeddonorsshowthattheynotonlythinkaboutthechildrenthey'vehelpedtocreate,butalsoindicateastrongpreferencetowardbeingabletoknowthem.Theextantresearchcorroboratestheseexperiences(DSR,2015).
Althoughanonymousgametedonationisbannedin11countriesatthetimeofwriting,theUnitedStatesstilllagsbehindinmakingsuchanethicaldetermination.Therearenumerousobstaclestobanningdonoranonymityinthiscountry.Inthemeantime,theavailabilityofall-opengametedonationclinicswouldofferanalternativeoptiontothosewhowanttodotherightthingfortheirchildrenwhilesupportingorganizationsthatfollowthisprincipleasamatterofregularpractice.Sincemanyeggdonationclinicsarealreadyofferingethicaloptions,weofferasketchofwhatanidealspermdonationclinicwouldbelike.ItwoulddifferfromexistingU.S.spermbanksinthreemajorareas.
OpennessandContact
Firstandforemost,anall-opengametedonationclinic,whichwe'llcallTheEthicalSpermBank,wouldrequire
alldonorstomakethemselvesavailableforcontactwiththeiroffspringatanyage.Thedonorswouldsharephotos,answerquestions,shareinformationaboutthemselves,providefamilymedicalhistory,and,optionally,havesomerequiredin-personmeetings.
Thereasonbehindfosteringcontactatanyage,andnotjustoncetheageof18isreached,isthatidentity-formationbeginslongbeforethelegalageofadulthood.Thisistheagetypicallychosenbythoseclinicswhoprofesswillingnesstofacilitatecontactastheacceptabletimeforfirstoffspring-donorcontact,strictlyoutofliabilityconcerns;theageof18isnotchosenbecauseitisthehealthiestageforoffspringtofindoutwherehalfoftheirgeneticscamefrom.Theoristsonidentityformation,suchasErikErikson,statethatthemostsignificantperiodofidentityformationisadolescence-yearsbeforelegaladulthood(Brogan,2009).Curiosityaboutdonorsandhalf-siblingshasalreadybeenexpressedbytensofthousandsofdonor-conceivedpeopledesiringtoknowtheirfirst-degreegeneticrelativeslongbeforetheageof18(DSR).
AtTheEthicalSpermBank,donorcontractswouldstatethatdonorsarerequiredtomaintainapostingontheDonorSiblingRegistry(DSR),a501c(3)charityhelpingmorethantwelvethousandfivehundreddonor-conceivedpeopletoestablishmutualconsentcontactwithbothdonorsandhalf-siblingssince2000.Thiswouldprovidedonorstheabilitytoconnect,shareandupdateinformationwithfamilies,andrespondtopersonalmessages.Usingthesystemprovidesasenseofempowermentandsafetytousersastheycanhavecompletecontroloverallsharingofinformation,therebysafelyconnectingwithdonors/offspring/half-siblingsandtakingtheprocessasslowlyasiscomfortable.
FamiliesanddonorsontheDSRareanonymoustoeachotheruntiltheyvoluntarilysharepersonalcontactinformationwitheachother.Thissystemiscurrentlybeingutilizedandpromotedbymanyeggdonationclinicsandagencies.Shouldthedonorrefuseallcontactwithhisoffspring,hewouldbeinbreachofcontract,andlegalconsequenceswouldfollow.
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Similarly,theintendedparentswouldsignacontractstipulatingthattheywillalsoopenaDSRaccountandaddtheirpostingwhenthechildisborn.Theircontractwouldrequirethattheynotrestricttheirchildfromknowingofhisorhergeneticoriginsormakingcontactwiththedonor/siblings.Obstructingtheprescribedprocesswouldbeconsideredabreachofcontract.Asanaddedbenefit,TheEthicalSpermBankwouldmaintainupdatedcontactinformationforalldonorsandfamiliesandfulfillrequestsinanhonestandefficaciousway.
BesidesmandatorypostingontheDSR,donorsandrecipientswouldhavetheoptionofalsosigningacontractmandatingthatdonorsmustmeettheiroffspringinpersonatleastoncebeforetheageof10(beforeoraroundthestartofpuberty),oncemorebetweentheagesof10and18(forcontinuedidentityformationanddevelopmentofself-knowledgethroughtheteenyears),andonanynumberofadditionaloccasionsifmutuallydesired.Evidencethatthetworequiredmeetingsoccurredwouldneedtobesubmittedtotheclinic,intheformsofaphotographorvideoandlettersfrombothparties.
Thefactthatdonorsrelinquishallparentalrightsandresponsibilitiestowardtheirgeneticoffspring,asperstandardlegalpractice,wouldgiveparentspeaceofmindandrelieveanyfearsoverlosingtheirchildtothedonor.Thedonorwouldalsoagreenottointrudeuponthefamily'sprivatelives,orbeinvolvedinparentingwithouttheparents'expresspermission.Inturn,thefamilywouldagreenottocontactthedonors'family,friends,employers,orotheracquaintances,orpublicizethenatureofthedonationwithoutexpresspermissionfromthedonor.
Theintendedparentswouldbeeducatedontheinherentdesire,benefits,andimportanceofaperson'srighttoknowtheidentityofbothbiologicalparentsandwouldgiveinformedconsentbeforeproceedingwithinsemination.Anyintendedparentwhodoesnotagreetothetermswouldbedisqualifiedfromtheprogram.But,becausethepracticesandphilosophyoftheclinicwouldbewell-publicizedanddisplayed,onlyparentswhoareopentothiswayofraisingtheirdonor-conceivedchildwouldlikelyconsiderworkingwiththeclinicinthefirstplace.Asgreaterpublicawarenessdevelopsonthisissue,thedemandforsuchpracticesmayriseovertime.
RecordingandReportingBirths
ThesecondmajordifferencefromexistingU.S.spermbanksisthatTheEthicalSpermBankwouldconscientiouslyrecordandopenlyreportthenumberoflivebirthsperdonor.Thispracticecouldfostergreaterresponsibilitybecauseitwouldenablethebanktoaccuratelylimitthenumbersofbirthsperdonorandgiveparentsandoffspringanideaofhowmanyhalf-siblingstoexpect.Parentstoomaynaturallyveerawayfromcreatingascenarioofexcessivenumbersuponseeingthatadonoralreadyhasnumerousoffspring.
Carefullimitingofthenumbers,guidedbyresearch,wouldallowfortheavoidanceofconsanguinityandsocialoverwhelmonthepartofdonorsandoffspring;therewouldbealowerchanceofhalf-siblings,cousins,orotherunwittingrelativesdatingeachotherandbecomingphysicallyintimate,anddonorsandsiblingswouldbelesslikelytofeeltheneedtomeetachallenginglyhighnumberofrelatives.Mostclinicsdonotaccuratelytrackbirthsand,withoutsuchtracking,noconsistentlimitscanbeplacedonbirthsperdonor.Atthetimeofwriting,thelargesthalfsiblinggroupontheDSRhoversaround200,andthedonorlistedontheDSRwiththemostoffspringconnectionshas75ofthem(DSR).Theremaybecasesofevenhighernumbers.
GeneticandMedicalTesting
Thirdly,TheEthicalSpermBankwouldcarryoutcomprehensivegenetictestingonbothrecipientsanddonors,andconductmedicalexaminationstoavoid,atallcosts,thecreationofoffspringwithseriousdiseasesorhealthconditions.Manyexistingclinicsclaimtodoso,butnewsstoriesattesttothefactthatthispracticeisneitherthoroughnorcomprehensiveatallclinics.Currently,someclinicstestsomedonorsforsomediseases,apartfromtheFDA'smandatedpracticeofSTDtesting.Parentsshouldknowwhattheyaregettinginto,medicallyspeaking,whentheychooseaspecificdonor.Foraclinicordonortohideaconditionthatthedonormaypassdownisunethicalandpotentiallytragic.
Additionally,spermrecipientsshouldhavecompleteinformationavailableabouttheirowngeneticstomakesuretheyarecompatiblewiththeirdonor'sgenetics,particularlytobesurethattheyarenotbothcarriersofthesameproblematicrecessivegene(s).Knowledgeofinheritedphysiologicaland
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psychologicalpredispositionscanbeasignificantelementinaperson'shealthcare,particularlyinpreventativehealthcare.
Currently,thereislittletonomedicalfollow-upwithdonors,andinformationisrarelysharedandupdatedwithfamilies.Spermbankstendnottohaverecordsonallthefamilieswithchildrenfromaparticulardonor,exacerbatingthesituation.Familiesonlyhaveasnapshotofonedayinthelifeofahealthydonor'sself-reportedmedicalinformation,withnoideaofwhathasoccurredafterthatdate.Becausemanymedicalandgeneticissuesareadult-onsetandthemedicalissuesofadonor'soffspringarerelevanttomultipleparties,theimportanceofestablishingcontactwithadonortoensureafree-flowofupdatedmedicalinformationcannotbeoverstated.Everyfamilythatincludeschildrenfromadonorwithaseriousmedicalconditionneedstobeupdatedwiththisinformationsothattheappropriatemedicalscreeningsandtreatmentsforthechildrencanbesought.
ConcludingThoughts
Atthetimeofwriting,existingspermbanksofferonlyanonymousdonorsorbothanonymousand“open”donors.Thelatterclaimcanbemisleading,sincespermbanksoftenfailtofollow-uponrequestsforcontact,tellfamiliesthatdonorswhowerechosenas“open”arenowanonymous,orclaimtonotbeabletoreachthedonor18yearsafterdonation.Andbanksclaimthatintendedparentscontinuetorequestanonymousdonors,leadingthemtoprovidethatwhichisindemand.Inotherwords,theywanttomakesurebusinessisgoodbymeetingthedesiresoftheirclients.Therefore,theyrefusetodropanonymousdonationasanoffering.Weknowthat,whenintendedparentsareproperlyeducatedandcounseledonthepsychologicalneedofknowingone'sgeneticorigins,theywillnaturallychoosetodowhat'sbestfortheirchild,puttingtheirownfearsaside.
Currently,mostclinicsdonotemphasizethepsychologicalwell-beingoftheirservice'snon-consenting“products.”Thereasonisthat,untilnow,
thefocushasbeenontherightsoftheclinicstosellgametesandprosper,therightofaparenttohaveachild,andtherightofadonortoremainanonymous.Nowisthetimefortheneedsandrightsofdonor-conceivedpeopletonotonlybecomeapartofthisconversation,buttobecomefirstandforemostinthisconversation.Onlytheycanprovideanaccurateunderstandingoftheirownexperiences-nottheconjectureofdetachedmedicalprofessionalsorunknowingparents.TheEthicalSpermBankwouldrequirethischild-centeredfocusofallitsclients.
Thereproductivemedicineindustryhasclaimedthatbanninganonymousdonationwoulddecreasethenumbersofavailablegametedonors.WhilethishasnotbeentrueincountriessuchastheUK,itiscertainlyapossibilityhereintheU.S.WecurrentlydonothaveenoughorgandonorsintheU.S.,butthatdoesnotgiveustherighttoprocuretheseorgansthroughunethicalorillegal(payment)methodologies.Thecasemaybethat,sometimes,inthenameofethics,therejustmightnotbeenoughdonors.Theenddoesnotalwaysjustifythemeans,andanonymousdonationisnotethicallyjustifiableasameansforparentstoformafamilyandforclinicstomakeprofits.
Therewilllikelystillbesomeintendedparentswhowouldrathertakewhatmightappearasthepathofleastresistance,basedontheirownfearsandlackofeducation,andfortheirownconvenienceandcomfort.Butthegrowingculturalmovementtowardopennesswithone'schildren,alongwithadequatecounselingandeducation,willeventuallyplacepressureonsuchparentstodotherightthing.Thesearetheonlysolutionsintheabsenceofgovernmentregulation.Perhapsintimeandaspublicpressuremounts,regulationwillfollow.Eitherway,TheEthicalSpermBankisanideawhosetimehascome.
Co-writtenwithLauraStrong.
ReferencesBrogan,R.(2009).Majorprocessesinidentitydevelopment.Publishedoneducation.com.RetrievedonlineJuly17,2015athttp://www.education.com/reference/article/identity-development/
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FINDING OUR PEOPLE: Wendy and Ryan Kramer’s Story by Ellen Glazer
Oneofthewaysthatwetrytoenrichthelivesofourmembers,aswellastoeducateothersaboutdonorconception,istotellstories.Weofferyouavoiceandbelievethatwhenyoushareyourstoriesofdiscovery,youemboldenothersto“findtheirpeople”andtounderstandtheirownfeelingsaboutdonorconceptioninnewways.Eachfamilystoryisdifferent,buttherearethemesthatrunthroughmanystoriesandinformus.DSRfounders,WendyandRyanKramerhaveastorythatnowspansmorethan2decadesandexpandsallofourunderstandingofdonorconception.Itisastoryofupsanddowns,twistsandturns,determinationandpatience.Itistestimonytothemagnificenceyoumayencounterwhenyouopenyourselftopossibilities.
TheBeginnings…
“Herewegoagain…”Since2000,WendyKramerhasbeenhelpingpeoplewhoseliveshavebeentouchedbydonorconceptionconnectwitheachother.EverydaynewmembersjointheDonorSiblingRegistry(DSR)andmostdays2or3ormorepeopleareconnectedwiththeirown,ortheirchild’sfirst-degreegeneticrelatives.Eachnewconnectionisexcitingandinsomeway,Kramercelebratesalongsidethosewhoarenewlymatched.Butatthebeginningandendoftheday,thisindefatigableheadoftheDSRis“justamom.”“InsomewaysIamnodifferentthananyotherparentontheDSR,signingontoseeifanynewhalfsiblingshavejoined.”
ThehistoryoftheDSR,andWendyandRyanKramer’spersonalhistoryareinextricablylinked.Wendyrecallstheeveningofherowndonorinsemination,lyinginbedquietlyrepeatingthewords“Pickme.Pickme.Pickme.”Twoweekslatershelearnedshewaspregnant.BythetimeRyanwastwoyearsold,itwasclearthathewasexceptionallyintelligent.Bythreehewasasking,“didmydaddie,orwhat?”afternoticingthatotherchildrenathispreschoolhadbothmomsanddads.Byagesixhewasclearhewantedtomeethisgeneticfather.Hadadifferentchildpickedadifferentmom,itisunlikelythattheDSRwouldexist:
theorganizationwasconceivedandgestatedbecauseonecuriouslittleboyaskedquestionsthatonelovinganddeterminedmomcouldnotanswer.Andtherest,astheysay,ishistory.
WendyandRyan’spersonalhistoryofexploration,discoveryandconnectionalongwiththeirexperiencesasthepublicfacesofDSRchroniclemajorshiftsinthepractice,publicperceptionsandprivatejourneysofdonorconception.Theirstory,whichbeganLaborDayweekend1989,withRyan’sconception,waslastupdatedthis2016LaborDayweekendwhenRyan,whowaitedsevenyearsforhisfirstmatchviatheDSR,hadanother.Thefirsttimeitwasasister.Thistimeitisabrother.Therehavebeenothersinbetween.Eachexperienceisnew,differentandcomeswithit’sownbrandofpleasuresandchallenges.
ThehistoryoftheDSRislinear—itisanorganizationthatbegansmall—tinytobeexact.WendypostedasmallnoticeonaYahoogroup,“I’mthemotherofanawesome10yearolddonorchild—Iknowthathehasatleastthreedonorsiblingsandwewouldlovetoconnectwiththem.Wearelookingfordonor1058fromCaliforniaCryobankandhopethatthiswillhelpotherslookingfortheirchildren’sdonors(ortheirown).”Bytheendof2000,therewere6members.Afterayear,therewere14.Bylate2002,membershipnumbered37andasofNovember2016,52,500peoplein105countriesaremembersoftheDSR.Steady,strong,magnificentgrowthinmembershipandalongsideit,influenceinlaws,policyandethicssurroundingarounddonorconception.
TheKramer’sfamilystoryisnotlinear.Yes,Ryanhasgrownfromayoungboyaskingquestionstoa26yearoldproductmanageratGoogleansweringquestions.Yes,Wendyhasevolvedfromamomtryingtohelpherson“findhispeople”toadazzlingleaderofanlargeandinfluentialnon-profit.However,theirfamilystoryofdonorconceptionanddonorconnectionsisoneofmeanderingjourneysinkinship.Alongtheway,therehavebeenconnectionswithRyan’sbiologicalfather,donor,“grandparents,andanarrayofhalfdonor
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siblings.Somematcheshavebeen“easy”(relativelyspeaking)andothers,frustrating.
WearegratefultoWendyandRyanforsharingtheirstoryandhopethatitwillhelpDSRmembersandothersseeandappreciatetheirownstoriesinnewways.Forinthewordsofsociologistanddadthroughdonorconception,JoshuaGamson,“Storieshelpmakethingsmakesense.Theyputthingsinorder.Thisishowithappened.Theyarealsothestufffromwhichidentitiesarebuilt.Creationstories,inparticular,areaboutselfhood.‘Intellingthestoryofourbeginning,asanindividual,anation,apeople,’asthesociologistFrancescaPolettaputsitsimply,‘wedefinewhoweare.’Thisishowithappened.”
ModernFamilies,JoshuaGamson
PICKME,PICKME,PICKME
DonorconceptionhaschangedexponentiallysinceWendyandherthenhusbandchose“DI”whentheylearnedthathewasinfertile.“Over27yearshavepassedbutIcanstillrememberthatAugustdaywhenthedoctortoldus,‘Youwillneverhavechildrentogether.’IfeltlikeI’dbeenkickedinthegut.”Alwaysapersonofactionwhodoesnotknowwhatitmeanstoprocrastinate,Wendypickedherselfup,dustedherselfoffandalongwithherex,movedquicklytothenextstep.“Inthosedayspeopleseekingspermdidn’tgetbabyphotosorquestionnaires,voicerecordingsor‘staffimpressions.’Wemetwithawomanatourlocalclinicwhotookalookatmyhusband’scoloring,height,weightandaskedaboutethnicityasshetriedtomakeamatch.ByLaborDayweekend,Iwasundergoingtwoinseminationshavingnoideaatallaboutthemanwhowouldbethegeneticfatherofmychild.”
WendysaysthatmanypeoplehavegoneontheDSRwebsiteorseenheronTVandhaveassumedthatshewasasinglemotherbychoice.OnlearningthatshewasmarriedwhenRyanwasconceived,theyaskaboutRyan’s“father”.Wendyexplainsthatherex-husbandwasRyan’sdadforRyan’sfirst18monthsbutfromthatpointforward,WendywasRyan’sonlyparent.
“Thismakespeoplereallyuncomfortable,”Wendysays,“Theyunderstandablyworryabouttheideathatanonbiologicalparentcanhavehis/herparentalrightsandresponsibilitiesremoved.”Wendygoesontoexplainthatherex’sexitfromRyan’slifehadnothingtodowithgenetics—theydivorcedbecauseof
substanceabuseissuesandbecauseWendyhadotherworriesaboutRyan’ssafety.Wendy’sgoalwasforRyantogrowupinasafeandhappyenvironmentandlookingback,Wendybelievesthatthiswasherex’sgoalaswell.“IbelievehegaveuphisparentalrightsandresponsibilitiesinpartbecauseheknewitwasbestforRyan.Insodoinghewasabletoleaveourlivesandreturnafewyearslaterasafriend.”
Havinghadhersonwithahusbandandhavingtakingtheextraordinarystepsofendinghisfatherhood,WendysayspreparedhertorespectandrespondtoRyan’sdesiretoknowhisgeneticdad.Thiswasnotalwayshowdonorparentsfeltthough.Sheremindsus,“Inthosedayspeopledidnotaskquestions.Thoseofuswhouseddonorspermhadnoideawehadtherighttobecuriousortherighttosearch.Similarly,donorsassumedtheyhadnorights.”ButbacktoWendyontheexamtablereceivingsperm,originsunknown.
“IjustlaytherelookingupataposterofKevinCostnerontheceilingandmumblingtomyself,‘Pickme.Pickme.Pickme.’IwantedthismorethanIcouldhaveeverimaginedandwithinaweekorso,Iknewthatmypleahadbeenanswered.AnearlypregnancytestwaspositiveandonMay22,1990,Igavebirthtoabeautifulbabyboy.”Wendy,whoisneitherareligiousnoraspiritualperson,feltcertainthatRyanhadpickedher.Andsoshewasnotsurprisedwhenat3,heryoungsonsaidtoher,“Youknow,Ipickedyou.”Sotheretheywere—anexceptionallybrightandcuriousboyandamomwhohadmortgagedherheartforever.
Oneofthefirstthingseveryparentlearnsisthatthechildyougetisnotlikelytobethechildyouanticipated.InWendy’scase,thesurprisesbeganwithRyan’sremarkablemind.Wendyandherthenhusbandhadrequestedadonorthatresembledhimphysically,neveraskingforanythingparticularinregardstoacademicsorintelligence.Wendyjokes,“Iputinforregular,buttheygavemepremium.”AndsoRyan’sexceptionalintelligencecameasacompletesurprise.Bythetimehewasinfirstgrade,testingconfirmedthatRyanwasprofoundlyexceptionallygifted.Alongwiththisnewscamethepsychologist’sprescientobservation,“PeoplelikeRyandon’tusuallyfind‘theirpeople’untiltheyareingraduateschool,havegraduatedfromcollege.”
Wendytookthepsychologist’swordstoheartandearlyonhadaprofoundrespectforwhatsheanticipatedwouldbeRyan’sneedtofind“hispeople.”
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Ryanhadtutorsandmentorsandawonderfulbig“BigBrother”whowasascientist.Thisalsomeantnavigatinganeducationalsystemthatisn’tsetupforachildwhoneedstoaccelerateoraboywhobeginsasafull-timeaerospaceengineeringstudentisacademicallycollegereadyat14.ItalsomeantrespondingtoRyan’sstateddesire,beginningatagesix,tomeethisbiologicalfather.Unabletoofferhimthis,Wendydidwhatshehasnowhadlotsofpracticedoing:shefollowedherson’sleadandtriedtofigureoutasolution.
“Fromthestart,RyanandIwereclearthatwedidn’twanttosearchforsomeone.Insteadwewantedtomakeitpossibleforustobefound.Eventhen,atatimewhenpeopleunderstoodlittleaboutdonorconceptionandtheneedthatsomehavetofindgenetickin,weknewthiswasnottherealmofprivatedetectives.Ithadtobegroundedinmutualconsent.”
Buthowdoessomeonegofromknowingnothingtoknowsomethingandmore?Wendysaysthatherpath—andRyan’s—beganwithhercontactingherclinicwhenRyanwasthreeandaskingiftheycouldtellheranythingatallaboutthedonor.Thewomanwhospokewiththemofferedthisstartlingreply,“Oh,youneverreceivedthelongform?YouweregivenDonor1058fromCaliforniaCryobank.”Withthatsherequestedthatthelongformbemailed,andwhenathickenvelopearrivedafewdayslaterfromCaliforniaCryobank,Wendyletitsitonthecounterforafewhours.“ItwasdauntingtothinkthatitincludedallsortsofinformationaboutRyan’sbiologicalfather—andhence,aboutRyan.”
Whenshedidopenit,Wendyfound,asexpected,thatitcontainedmuchthatwouldbeimportanttoRyan.“Perhapsthemostprofoundexperiencewassimplyseeinghishandwriting.Donor1058wasnolongeravaguehintofaperson—hewasreal!”Wendygoesontosaythatreadingabouthobbiesandinterests,talentsinschoolandphysicalcharacteristicsofthedonorandhisfamilywouldallproveimportanttoRyanovertime.“Itwasn’tlikewecombedtheprofiledailybutwedidlookatitfromtimetotime.Ryanwouldgotoitwhenhehadanewinterestorlearnedsomethingmoreabouthimself.Ithelpedsomuchtobegintoputthepiecestogether.ItwasanimportantpartofRyan’sidentityformation.”Wendyoffers,asanexample,hairandeyecolor.Wendyandherfamilyallhavedarkhair.Ryanwasveryblondasyoungchild,afeaturethatconstantlycalledattentiontothefamily.
“Wheredidhegetthatblondhair?”strangerswoulddeclareinwonder.Wendyremembersshruggingandansweringquitehonestly,“Ihavenoidea!”ReadingtheprofileandlearningthatDonor1058’sbrotherhadblondhairanddarkeyeswasimmenselyhelpful.
Thequestionnaireincludedamessagefromthedonortofutureoffspringthatread“EducatethechildRaisehim/herwithoutbiasesofanykind.Teachhim/hertotrustinothersbuttorelyonself.Instillinhim/herasenseofhumorandtheabilitytoenjoylife.”ToWendyandRyanthisspokevolumes.ItassuredthemthatRyan’sbiologicalfatherwasagoodpersonandthemessagespoketohismaturityandsensitivity.Ryan’sinterestinmeetinghimincreasedandmotherandsonbegantothinkmoreseriouslyabouthowtheymightputthemselvesinapositionofbeingfound.“Wedidn’twanttointrudeuponhimbutwewonderedifhemightfeelaswedid—adesiretomakecontact.WewantedtolethimknowthatRyanexisted,andgivehimtheopportunitytochoosetoconnect.”
OvertheyearsWendyhadcalledCaliforniaCryobankwithsomeregularity.“Iwouldaskthemiftherewereanyupdates,anychangesinpolicies,any-anything.”EventuallyWendywouldhaveacallthathitpaydirtbutinthemeantime,shewonderedifitwouldhelpforRyantowritealetter.“MyfirstgoalwastohelpRyanfeelthathehadsomecontrolofthesituation.Sadly,I’veheardfromsomanyDSRmembersthattheyfeelpowerlessastheirspermbanks,doctors,medicalclinics,andeggdonoragenciesworkveryhardtowithholdsomeofthemostimportantinformationthatadonorchildcandesire.IsuggestedtoRyanthathewritealettertothespermbank.AlthoughIknewtheletterwouldlikelyendupinafileandneverbeshared,itwastheprocessofwritingtheletterandsendingitoffthatIfeltcouldbeempoweringforRyan.”
Howdoyouignorethepoignantletterofaseven-year-oldchild?CaliforniaCryobankdidandtheirnon-responsefurtherprovokedWendyKramer’sire.Sheuppedthevolumeinheryearlycallstothespermbank.Sadly,herpleasonherson’sbehalfyieldedonly,“wepromisedourdonorsanonymityandourobligationistomaintainthis.”“Butwhataboutanobligationtotheresultingchildren?Theyneversignedanyagreements.”Wendywondered.Unnervedandunwillingtoremainpassive,Wendybeganhoningherdetectiveskills.Overtheyearsshehasmasteredthem.
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Wendylooksbackwithamusementatherfirstforayintosearching,whenRyanwasthree,longbeforetheInternet.“AfriendputanadintheLATimesmisc.classifiedsectionthatread,‘Donor1058,wewanttothankyou.’Itincludedourphonenumber.Weplaceditandwewaited.AweeklaterIreceivedacollectphonecallfromtheLACountyjail.Surprised,Iremindedmyselftobeopen-minded.Isaidtomyself,‘Ryan’sdonorisagoodpersonwhomusthavemadeamistake.’IacceptedthecallandsoonrealizedthatthevoiceontheotherendwasanAfricanAmericanman.AlthoughRyansuredidnotlookAfricanAmericanIwentwiththisinformationaswell—ok….soRyan’sgeneticfatherwasAfricanAmericanandisinjail.Ok,Icanbeopen-minded!Itdidn’tmuchmatter—whatmatteredwasthathewascontactingus.Hewantedtobefound.”Asitturnedout,itwasawrongnumber.ThecallerwasrespondingtoanadforaChristopherDarden(attorneyintheOJtrial)look-alikepenpal.
Afewyearslater,WendyobtainedsomestartlingnewsfromaladyatthespermbankandhermotherquicklypasseditontoRyanbeforeshehadtimetofullyprocesshowtotellachildwhowouldimmediatelywantanswers.“Ihadwantedtowaitabit,”Wendysays.“Iknewthathewouldbecomeover-the-moonexcitedbyitandIwantedtohaveaplanbeforetellinghim.”Theinformation,whichWendyhadlearnedsomewhatinadvertently,wasthatRyanhadseveralhalf-siblings“outthere.”TheinformationhadcomefromanatypicallytalkativewomanatCaliforniaCryobank,thatusualfortressofsecrecy.
Asanticipated,Ryanwasfiredupbythenewsthathehadhalfsiblings.“IfIwanttoknowthem,thenmaybetheywanttoknowme?Howcanweknowabouteachotherifthespermbankswon’tputusintouchwithanyone?”Likemanyparentsandtheirchildren,WendyandRyanhadtheirbestconversationsinthecar.“WeusedtobrainstorminourcommutefromNederlandtoBoulder,andback.”Wendyremembers.“WewouldtrytofigureoutwaysthatRyanandhishalfsiblingscouldfindeachother.ThenRyanbeganlearningaboutYahoogroupsandwedecidedtogiveitatry.”Theirfirstmessage,“Iamthemotherofanawesome10yearolddonorchild.Iknowthathehasatleast3donorsiblingsandwouldlovetocontactthem.WearelookingforDonor#1058fromtheCaliforniaCryobank.Ihopethatthisboardwillserveotherslookingfortheirchildren's(ortheirown)siblings.”
AndthatishowtheDonorSiblingRegistrywasborn.Initsearliest,embryonicformitwastheYahoogroup,andthatveryfirstmessagethatWendyandRyanlaunchedonSeptember3,2000.
“TheYahoogrouphelpedgetusstarted,”Wendyremembers.“Buttheprocesswascumbersome—wehadtomakealltheconnectionsourselves.Fortunately,I’dmadecontactwithSheri,acomputersavvymomthroughthegroupandsheofferedtobuildusamatrix.Thatmatrix—whichledtoourwebsite—enabledustobewaymoreefficientandeffective.”AndsotheDSRwebsiteasmostofusknowitwasborn.
Lookingback,Wendyidentifiesherselfprimarilyasamomonamission.ShehadachildwithquestionsandshewasfearlessanddeterminedtodowhatevershecouldtogetRyan’squestionsanswered.ShefeltthatshehadbroughtRyanintothisworldwiththisparticularsetofcircumstances,andshethereforeowedittohimtodowhateverhumanlypossibletohelphimfindtheanswerstothequestionsthathehadaboutthemissingpiecesofthishisidentity.However,somewherealongtheway,Wendyrealizedthatwhatshewasdoingandwhatshewasbuildingwentbeyondherfamilystory.“Inmanyways,IhadnoideawhatIwasdoing.Iwascreatingsomethingoutofnothing.Itwassomethingthathadneverexistedbefore.Itdidnotfitinanyexistingcategory.Puttingonefootinfrontoftheother,Idecidedtotalkwithalawyerandformanon-profitorganization.”
TherehavebeenafewpeoplewhohavebeeninstrumentalinhelpingWendyandRyangrowtheDSR.OnewasaformerdonorintheUKwhosentWendya$1000donationtohelphergettheDSRofftheground.Anotherwasanattorney,awomanwhoprovidedvisionwhenWendyhadnone.Astheytalkedtogether,Wendyremembersthelawyersayingtoher,“Youwillbewritingpapersandtalkingatconferencesandeducatingthepublic.”Wendyremembersglazingoverandthinkingthelawyerwasalittlecrazywhensheheardthesewords—wordsthatfeltsoforeigntoheratthetime.“ThelawyerofferedmevisionwhenIhadnone.”ThelawyeralsoofferedthelegalexpertisethatenabledtheDSRtogainnon-profitstatusin2003,after9monthsofwranglingwiththeIRS.
TodaytheDSRwebsiteisaverylivelyplace.Thereareemailsliterallyflyingaroundtheworld,amongpeoplein105countries.Eachdaymatchesatleast2-3people.Butatthebeginning,thingsmovedveryslowly.WendyandRyan,twopeoplewhothriveonaction,
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hadtowaitpatientlyforthreemonthsaftertheirfirstYahoopostbeforehearingfromanotherdonormom.She,too,wasseekingherdonororherson’shalfsiblings.donorconceptions.TothisWendy,whowasbeginningtolearntowait,replied,“Itmaytakesometime.”
Anditdidtaketime.ThesedayssomepeoplewhosignontotheDSRandhaveaninstantaneousmatch.Butmanywait.ThatsecondmomtosignonwiththeDSRwaitedtwelveyearsbeforeherson’sbiologicalfatherfinallysignedontotheDSR.ForRyan,sevenyearswouldpassbeforehebecamethe2,910thpersontomatchontheDSR.Butthatdoesnotmeanthatintheinterim,hismomembracedpatience.In2002,withonly37membersontheYahoogroup,Wendy“tooktheshowontheroad.”AftersendingemailstoDenver’sthreelocalTVstations,tellingthemaboutRyanandofhisquesttofindhisbiologicalfather,theNBCaffiliatedecidedtorunastory.TwoweeksafterthaalTVstationstoairRyan’ssrory,workedandwithintwot,,DianeSawyerwasinterviewingRyanandWendyonGoodMorningAmericainNewYorkhershow.
OPRAHFINALLYCALLS
Appearancesontheothermajortalkshowsandnewspapersfollowedandwiththem,WendyandRyan’svoiceswereheardacrosstheUSandbeyond.Alongtheway,theyrealizedthattheirquestwasnotonlytofind“Ryan’speople,”butalsotoeducateandsupportallthosewhoselivesweretouchedbydonorconception.“Beforethen,”Wendyremembers,“Peopledidnotknowtheyhadrights.Donoroffspringandparentsdidnotknowtheyhadtherighttobecurious,therighttosearch,ortherighttoconnectwiththeirfirst-degreegeneticrelatives.Additionally,thedonors,whowerepromised(orforcedinto)anonymity,alsohadcuriositiesanddesiredtoknowaboutthechildrenthattheyhadhelpedtocreate.”
Wendysetshersightshighandalthoughproudandtickledtohaveanationalaudience,shewouldoftenquipwithfamily,“Oprahstillhasn’tcalled….”ThewordsmayhavebeensaidhalfinjestbutWendyacknowledgesfullforcedelightwhenherphonerangwiththecallerIDHARPOStudios.Afewweekslatersheanda12-year-oldRyanwereinChicagotapingtheirfirstOprah(Harpospelledbackwards)show.
TheOprahshowwastransformative.OnapersonallevelforWendyandRyan,Oprahwassimplyaffirming.
Shetookthemseriously.SherespectedandadmiredRyan’ssearchandunderstoodhisneedtobeknown.ShetoldRyan,“Ibelieveyouwillfindyourbiologicalfather.”AndOprahwaskindandgraciouswithWendy,takingherbybothhandsandjubilantlygreetingheras“Ryan’sMom,Ryan’sMom,Ryan’sMom.”
Wendy,Ryan,andWendy’smomJackisharedtheexcitementofbeingonOprahalloveragainwhentheshowairedonMay22,2003,Ryan’s13thbirthday.Goingliveatdifferenttimesindifferenttimezones,thefamilyspenthourswatchingtheTVmonitorandrunningbetween2computerscreenswhereflocksofpeoplewerejoiningtheYahoogroup.There,inthemidstoffranticallysigningpeopleon,Wendyreceivedtheemailthatmatteredmorethananyoftheothers.Itwastitled,“Donor1058?”Ryanhadnotidentifiedhisdonor’snumberonOprah.
Havingbeamedhisstoryoutintotheuniverse,Ryanwasoverjoyedtohavesomeonebeamback.Thecontentoftheemailread,“WasthatyourRyanonOprahtoday?”TothisWendyreplied,“Yes!!!”Andthewriterbeamedback,“IguessIknewthatwhenIsawhim.Igavebirthtohistwohalfsisters.Theyare10and7.Likehimtheyarebrilliantandbeautiful….”Wendy,Ryanandhisgrandmaallhugged,laughedandcriedtogether.Ryan’sbirthdaycelebrationwasnowinTechnicolor.Hewasoverthemoonelatedtoknowhehadtwohalfsisters,toseephotosof“twolittlegirlswholookedlikemewithwigs”andperhaps,mostofall,tobeknown.Onhearingofhistwohalfsiblings,herepliedtotheirmother,“Iamscreamingwithjoy.Weareallscreamingwithjoy.Pleasewritebackassoonasishumanlypossible.”AndoffthefamilywenttoRyan’sbirthdaydinner,hisheadhangingoutthecartodeclaretoeveryoneinhishometownworld,“Ihavetwosisters!Ihavetwosisters!”
ThestoryoftheDSRisoneoftwistsandturns,joyfulmomentsandfrustratingsetbacks.AndsoitwastobewithRyanandthisfirstcontact.NosoonerwereRyanandhismomthinkingaboutflyingtotheeastcoasttomeethissisters,thentheirmombeamedbackadevastatingmessage,“Wehavenottoldourdaughtersthattheyweredonorconceivedandwedonotplantodoso….”
HadRyanpickedadifferentmom,itiseasytoimaginethestoryendingthere.Howmuchhurtanddisappointmentandfrustrationwashetotakeandwasthisquestleadinganywheregood?Fortunately,
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Wendy’sunbridledfeistinessandimmeasurablepatiencekeptthemgoing.ThereisnootherwaytosayitthanthatRyanwascrushed.Somuchhadhappenedinsoshortatime.Hehadgainedanationalvoice.Hehadbeenheard.Hehadbeenfound.Hehadtakenagiantleapforwardtowardsfinding“hispeople.”Andnowthisgiganticsetback:thegirlswereouttherebutnotonlycouldn’themeetthem,theycouldnotevenknowthatheexisted.Butasonedoorcloses,anotheropens.Beforemovingontothatnextdoor,abitoffollow-up…
AlthoughRyanhasnotmetthesetwohalfsistersandtheydonotknowabouttheirownbiologicalorigins,orabouthim,heandhismomhavebeenabletolearnmore.TheirmomexchangedmoreemailswithWendyanditwasshewhoprovidedthemwithDonor1058’supdatedprofile,adocumentthatprovedinstrumentalinlatersleuthing.Shealsotoldthemmoreaboutthegirlsandevenprovidedaphoto.PerhapsevenmorehelpfulhasbeenFacebook.WendyandRyanhavebeenabletofollowthegirlsandatleastseeupdatedphotos.
“BUTTHAT’SJUSTANECDOTAL”
Althoughtheiroriginalgoalwastohelppeoplewhoweregeneticallyrelatedmakemutualconsentcontact,WendyandRyandiscoveredearlyonthatotherimportantconnectionswerehappening.Acommunitywasforming.WhentheDSRwebsiteemergedastheplacewherematchesweremade,theYahoogroupbecametheplacethatpeoplewentforconversation,newsandadvice.Informationwasshared.Peopletoldanecdotes.Issueswereraised.Themesemerged.Muchofthiswaswarmandenlightening—participantsaffirmedtheneedtoknoweachother.However,someofwhattheylearnedfromeachotherwastroubling:spermbankswerenotkeepingrecords.Medicalinformationreportedtothemwasbeingignored.Thespermindustrydidnotseemtocareaboutitsconstituents.Troubledandevereagerforchange,WendytookherconcernstotheAmericanSocietyforReproductiveMedicine.“Iexpectedtheywouldbegladtohearfromusandwouldhaveourbackswiththespermbanks.Insteadtheirspokespersonsaidthathedidn’tvaluetheinformationcomingfromtheDSRasthereportswerepurely‘anecdotal’.”
OnedoesnotsaynotoWendyKramer.Inherwords,“IdrivethetrainandwhenIamdrivingthetrain,italwaysleavesthestation.Andontime.”Thatsaid,
Wendywasanaccountant/businessmanagerandrestaurantownerwhodidnotknowhowtoconductformalresearch.EnterDr.SusanGolombok,DirectoroftheCentreforFamilyResearchatCambridgeUniversity,in2006.“DearWendy,”Dr.Golombokbegan,“IwasinterestedtoreadintheUKpapersaboutyourwebsite…..”Conversationsfollowed,WendytravelledtoCambridgeandresearchpartnerscametoWendy’shome.GolombokandhercolleaguesfromCambridgewereonboardandtheresearchtraincouldleavethestation.TheCambridgegroupofferedtheiracademicexpertiseandtheirbeliefinthesignificanceoftheDSRanditswork.Withinashorttime,theCambridgeUniversity—DSRcollaborationwaspublishingresearchthatwasbeingpresentedatconferencesaroundtheworld.Peoplewerelistening.MaybenottheASRM.Surelynotthespermbanksoreggclinics.Butotherswerelisteningandthevoicesofthedonorconceivedwerebeingheard-bothanecdotallyandviapeerreviewedpublishedresearchinprestigiousacademicjournals.
ADOOROPENSENTIRELYUNEXPECTEDLY
2004broughtmajorchangesinRyanandWendy’slives.Ryangraduatedfromhighschoolatage13andsomewhatunexpectedly,soonbecameafulltimeundergraduateintheUniversityofColorado’sAerospaceEngineeringprogram.ItwasalsoayearinwhichcommercialDNAtestingsiteswerejustgettingofftheground.Whenoneofthesesites,FamilyTreeDNAcontactedRyanandaskedifhewouldliketosubmitDNA,hedidacheekswabandsentitoffwithlowexpectations.Hewastoldthatitmightgivehiminsightintosomepaternalinformation,likecountriesoforigin.WendyandRyanwerealwaysupforanotherroute,anothertryandin2004,hesubmittedDNAtoFamilyTreeDNA.Indeed,hesoonlearnedthathispaternalheritagewasmostlyEnglish,someIrish,andeven4%Icelandic,whichhethoughtwasprettycool.Whathecouldnothaveanticipatedwasthatninemonthslateraconnectionwithtwoverydistantrelativeswouldsethimonapathtofindinghisdonor.ThispathbeganwiththefollowingemailfromamannamedMichaelC.
“IampartofaC.familyDNAproject.IwasjustcheckingmyclosestY-chromosomematchesandcameupwithtwopeoplewhowereathree-stepmismatchwithmeonthe37markertest;RobertGeneC.(theonepersonintheprojectthatIknowtobearelative)andRyanKramer.IthencheckedRobertC.'sresultsandhisclosestmatch,atwostepmismatch,wasalso
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RyanKramer.”MichaelC.thengoesintosomegeneticdetailsandcontinues,“Inotherwords,RyanfallsbetweenRobertandmeasifhewerefromathirdbranchofourfamily.WearedescendedfromtwobrothersfromNorthCarolina,AlexanderC.(b.1710)andThomasC.(b.1722)…”
Thingsgotinterestingquickly.MichaelC.wroteon,“Ididawebsearchfor‘RyanKramer’thinkingthatifhewasintogenealogy,hemighthavepostedononeofthemessageboardsorevenhaveawebsitedevotedtohisfamilyhistory.InsteadwhatIfoundwasaDenverPostarticlefromlastNovemberaboutRyanandhissituation.AsecondsearchusingyouremailaddresspostedwithFamilyTreeDNAconfirmeditwasthesameRyanKramer….”
Theplotwasthickening.Ryan,whohadbeenwaitingaspatientlyashecouldforfouryearsontheYahoogroup,wasnowseveralstepsclosertoknowingtheidentityofhisdonor.BecauseFamilyTreeDNAidentifiedlinksviatheYchromosomeandnamesarepasseddowntraditionallyfromfathertoson,Ryan’sdonor’slastnamewaslikelytobeC.orsomevariation.TheironyofallthisdidnotescapeWendyandRyan.TheyhadestablishedtheDSRasaplaceformutualconsentcontact,notwishingtotrackdownor“out”anyonewhowishedtoremainprivate.PriortoWendyandRyan’sgoingliveonGoodMorningAmericaandOprah,fewacknowledgedtherightsofdonoroffspringtoseekgenetickin.Bycontrast,FamilyTreeDNAandcountlessgenealogygroupsfullysupportedthepursuitofone’s“people.”HowfittingthatRyan’smostsignificantleadwouldcomefromadistantgeneticrelativecuriousaboutgenealogy.ThemotherandsonKrameramateurdetectiveagencywasinbusiness.
Lookingback,WendyislightlyamusedbytheunexpectedsupportingcastofcharactersthatweretheretoassistRyaninhissearchforhisdonor.Therewasthe“ladywhoansweredthephone”atthespermbankwholetthemknowthereweremanyoffspring.DianeSawyerhelpedandOprahhelpedmore.Andtherewasthemomwhowouldn’ttellherdaughterstheyaredonorconceivedbutprovidedWendyandRyanwiththesecondarydonorprofilethatcontainedtheexactbirthdateofdonor1058.NowtherewerethetwoC.menbeaminginhelpfromdistantshores.Intheirownway,WendyandRyanhadassembledtheirteamofhelpersbutitwasthismotherandsondetectiveswhowereleadingtheway.
WendyandRyannowhadthreecriticalpiecesofinformationthatwouldleadthem—withoutmuchfurtherdelay—totheirdonor.TheadditionalCaliforniaCryobankdonorprofilepassedalongbythemomofRyan’shalfsistersofferedhisexactbirthdateandplaceofbirthandthankstothegenealogysleuthsonFamilyTreeDNA,theyhadtheleadonalastname.TheyrequestedapubliclistfrominLosAngelesCountyofallmalebirthsonthatparticulardayacoupleofyearsbefore,andhadtuckeditawayinadrawer.Wendyremembersthateeriefeelingofpullingoutthatlistofaround250namesandknowingoneofthembelongedtothemanwhohadgivenherRyan.
Andthereitwas.LanceC.Bornonthatexactdate.ThepiecesfittogetherbutWendy,evertheaccountant,isonewhocoversallbasesbeforereachingconclusions.Shetapedupalargepieceofwhitepaperonthewallanddrewalinedownthemiddle.Ononesideitsaid,“Donor1058”andlistedalltheyknewabouthimfromthedonorprofile.Ontheotherside,“LanceC.”andalltheywerelearningabouthim.Everythingthatmatchedonbothsidesofthemiddleline,wouldbehighlightedinbrightyellow.
WendyandRyanknewwhatengineeringdegreesLancehadandapproximatelywhenhehadearnedthem.Andtheyhadresearchedaboutpossiblecollegesoruniversitiesheattendedbasedonareasofstudyandgeography.Ryancalledthethreeorfourinstitutionsthatwerelikelymatchesandtoldhisstory,askingifanyonenamedLanceC.hadearnedadegreetherewithinalikelythree-yearperiod.Bingo—thenameandtheyearandthedegreematchedup.LancehadearnedhisMastersofEngineeringin1990.Thisnewstransformedthewhitepapertoablazeofyellow.Buttherewastoberemarkableicingonthisricherandrichercake:Lance’sdegreewasdatedMay22,1990,theverydaythatRyanwasborn.
Sotheretheyhadit.Ryan’sdonorhadgonefromadistantblurtoapersonintheformofDonor1058toreal,liveLanceC.,livinginSanFranciscoandworkingforGoogle(hewould,ofcourse,beamusedwhenhelateraskedRyanhowhehadfoundhimandRyan’sonewordsheepishreplywas“Google.”).Ryanbecamethefirstdonor-conceivedpersontolocateaformerlyanonymousspermdonorviaDNAtesting.Butwhattodonext?
Wendyisboldbutsheisalsocautious.Hadthingsbeenlefttoher,shewouldhaveletLance’sidentity
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marinateinhermindandinRyan’sforafewdaysormoreandthenthey’dfigureoutwhattodonext.ButRyanwasa15-year-oldteenwhohadjustcompletedmissionimpossible.Forhim,therewasnowaiting.HewokeWendyupinthemiddleofthenighttoletherknowhehadwrittenalettertoLanceandhe’dalreadypushed“Send.”Wendyremembersthinking,“Somuchforcollaboration!”
Wendyremembersreactingwithfear.Shehadseenhersongofromtheecstasyoflearninghehadtwosisterstothecrushingnewsthattheymightneverknowhim.MorehurtcouldsurelyfollowwithLance.WendyworriedthatRyan,brightasheisandwisebeyondyears,mighthaveputLanceoffbyhisletter.ShewasrelievedandquiteproudwhenshereadRyan’sletterandfeltsomewhathopefulthatitwouldbewellreceived.“Iwantedonething,”Wendyrecalls,“IwantedLancetobekind.”For48hourshermantrawas,“pleasebekind,pleasebekind,pleasebekind.”TwonightslaterRyanawakenedherasecondtimetojubilantlyannounce,“hewrotemeback!”Wendyknewtheanswertoherquestionwhenshesawherson’ssmilemixedwithtearsbutstillaskedthequestion.“Washekind?”Theanswerwasaresounding“YES!”
RyanhassharedhislettertoLance,afewexcerptsfromLance’sreplyandhissecondlettertoLance.
On6/14/05,RyanKramerwrote:
Lance,
Wheretobegin...mynameisRyanKramer,I'm15yearsoldandIliveinNederland,ColoradoIjustcompletedmyfirstyearattheUniversityofColorado,majoringinAerospaceEngineering.Recently,mymotherWendyandIhavebeendoingsomeresearchtryingtocompletemyfamilytree.Asyouunderstandinamoment,Ihavebeenmissingalargechunkofmyancestry.Aftermuchwork,DNAtests,privateinvestigationandpublicrecordsearching,IbelievethatIhavefinallyfoundthemanI’mlookingfor.Youmaywanttositdownforthenextpart.
15yearsagomymotherwasimpregnatedwithaspermdonationfromCaliforniaCryobankDonor1058.Accordingtothebriefamountofinformationwehaveabouthim,hewasborn****,1967,is6feettall,haslightbrownhairandbrowneyes.HeholdsaBSinindustrialengineeringandanMSinEngineeringManagement.Hisfatherisanurban
plannerandhisbrotherisapilot.HelikespoetryandhisfavoriteplacetoeatistheInandOutBurger.Youandthisman,Ibelieve,areoneinthesame,whichincidentally,makesyou,myfather.
Now,beforeyoujumptoanyconclusions,I'dliketoreassureyouofafewthings.1stofall,Iamnotcontactingyouformoney,Iamnotlookingforyoutoputmethroughcollege,nordoIseekanyotherformoffinancialaid.Secondly,Irespectthefactthatwhenyoudonatedasateenager,yousignedupforcompleteanonymity.Thus,Iamnotaskingforarelationship,noramIaskingyoutobecomeafatherfigureorapartofmylifeifyouarenotcomfortablewithit.Whilegettingtoknowyouwouldbethebestcasescenarioforme,thelevelonwhichweconnectisentirelyuptoyou.
BecauseIadvanced4gradesandwenttocollegeearly,TheDenverPostdidaratherlargearticleaboutthispastNovember.Itcontainsalmosteverythingyoucouldeverwanttoknowaboutme,soIamattachingthelink:
http://www.denverpost.com/boywonder/ci_0002556220/ci_0002556220.
Whenyouareready,youmaycontactmebywhatevermeansyoufeelmostappropriate.Tostartwith,Iwouldliketohearabitmoreaboutyou.Whatareyourhobbies?Interests?Areyoumarried?Wheredoyouwork,andwhatdoyoudo?Wheredidyougotoschool?Growup?SinceIstartedaskingaboutyouattheageof2,Ihavealwaysbeencuriousaboutyou.AnythingyouarecomfortabletellingmeaboutyourselfwouldbemorethanIknownow.
Withthat,Ileavetheballinyourcourt.Ilookforwardtohearingfromyou,andhopeyouarewell.
Sincerely,
RyanKramer
ExcerptsfromLance’sreply:
DearRyan,
I'mverypleasedtohearfromyou.
Mygreathopeisthatyouwilluseyourgiftsfortheserviceofmankind,solvingtheproblemsthatthreatenthesurvivalofthehumanraceinthelongrun,orbuildingtoolsthatwillenableotherstosolvetheseproblems.“Withgreatpowercomesgreat
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responsibility,”astheysaidinSpiderman.MoreoverIhopeyouwillworktoenableustobemoreintelligentasarace.
Ihopeyou'llcultivatealoveforreading,especiallyaboutleadership:theworldneedssmartleaders.
Youlookalittlelikemeatyourageinyourpicture.
IhaveanaboveaverageIQ,butsodoesvirtuallyeveryoneIworkwith–smartsarehelpful,butmethodologyandpeopleskillsarealsovitalinlife.
Idon'twantANYpublicityforbeingasperm-donorfatherrightnow,butIamthrilledtobeyourgeneticfather.
I'mhappytoexchangeemailswithyoufornow,butwewillhavetobuildanyrelationshipslowly.
Bestregards,
Lance
Ryanresponded….
Lance,
Iamverypleasedtohearfromyouaswell.Youemailwasveryinspiring,andyouseemlikeaverygoodperson,thekindIwouldgetalongwith.Idon'tknowifyourememberthisornot,butontheprofileyoufilledoutwhenyouwere19,yousaid“Educatethechild,raisehimorherwithoutanybiasofanykind.Teachhimorhertotrustinothers,buttorelyonself.Instillinhimorherasenseofhumor,andtheabilitytoenjoylife.”Iwasblownawaybyyourintelligenceandinsightfulnessatsuchayoungage.Itwasoneofthefewthingsonthatprofilethatwaspersonal,notjustaphysicalcharacteristic.Ialwaystookittoheartanduseditasagoldenruleforlife.
1stofall,thankyouforansweringmyquestions,IcouldnothelpsmilingasIreadyourresponses.Wesharealotincommon,anditisnosurprise.Ioftenseethingsinmyselfthatclearlydidnotcomefromthematernalsideofmyfamily,andwonderabouttheirorigins.ThingsI'minterestedin,physicaltraits,waysImoveorspeak,foodsIlikeor(moreoften)don'tlike,andmuchmore.Learningmoreaboutyouwillbeanenlighteningexperienceforme,nodoubt.
Inregardstoyourquestions,collegewentverywelllastsemester.My1stsemester(fall2004)wasactuallyquiteshaky.ItookGeneralChemistry,Calculus1,andIntroductiontoAerospace
Engineering.IgotanF,C,andArespectively.Thetruthis,collegewasakickintheteethat1st.Ihadbecomesoaccustomedtobeingboredinhighschool,whenIstartedcollege,Ihadaratherlargerudeawakening.Chemistry(whichisnotmyfavoritesubject,tosaytheleast)wasthemostdifficultforme.Calculuswasveryfunandveryeasytounderstand,butduetoafewstupidmistakesonexams,IendedupwithaC.IntrotoAerospace,however,wasveryeasyandenjoyable.Secondsemesterwasaloteasier.ItookChemistryagain,andjustfortheGPA,Itookcalculus1againaswell.IalsoaddedanEngineeringProjectsclass.Thistimearound,IlandedA'sandB's.
Myprojectsclassprovedtobequiteenjoyable.Iwastheleaderofateamof5,andwehadthesemestertodesignandbuilda“sustainabledevelopmentproject”.Myteambuiltahydrogencollectionandstoragesystem,usingelectrolysis.
Thissummer,Iplantorelaxandridemymountainbike.InMay,mymotherandIspenttwoweeksinTurkey,whichwasveryfun.WespentsometimeinIstanbul,thenafewdaysontheMediterraneancoast,aswellasa5-dayboatride.WehavetraditionallygonetoEuropeeveryyearsinceIwas8withtheexceptionoflastyear.Travelinghas
beenperhapsthegreatestlearningexperienceofmylife.I'velearnedsomuchabouthistoryandculture,muchmorethanIcouldeverfindinatextbook.Iamgratefultoherforprovidingmewiththatopportunity.
Forthisfallsemester,IamregisteredforCalculus2,Physics1,IntroductiontotheHumanities,IntroductiontoCivilEngineering,anda1-creditworkgroup.IhavebeensetonAerospaceformanyyearsnow,butrecentlyhavedevelopedaninterestinCivil.IamtakingtheintrotoseeifitsreallywhatIwanttopursueadegreeinornot.Iamalsolookingforwardtophysics,asitwasoneofmyfavoritesubjectsinhighschool.
Finally,Ihaveafewmorequestionsforyou,ifyoudon'tmindansweringthem.Forstarters,whatkindofmusicdoyoulike?Musicisalargepartofmylife,andmyiPodisusuallyrunningatleastafewhoursaday.Irecallyoulikingmodernrockonyourprofile.I'maclassicrockkindaguy…LedZeppelinorBobDylanwouldbemyfavorites.Howaboutmovies?IlikeTheThing,TheShawshankRedemption,the
79
originalStarWarsandTheShining.YousaidthatKeyboardwastobea“futurehobby”ofyours.Didyoueverpickitup?IbeganplayingkeyboardwhenIwas5,andplayeduntilIwasten.Ithenstudiedviolinforayear,andthencelloforafewyears.Irecentlyboughtanelectricguitarandhavebeenlearningafewthingsonithereandthere,butamlookingforwardtolearningthebassaswell.YoualsomentionedplayingultimateFrisbee.Doyouplayonanysortofateam,orjustforfun?Iaskbecauseitoneofmyfavoritesports.Anyway,IhopeIdidn'toverloadyouwithquestions.Remember,youdon'thavetotellmeanythingyournotcomfortablewith.
Also,IwouldliketoassurethatthatIcompletelyrespectyourrequestfornopublicity.Iunderstandcompletely,andIwillmakesurenottomentionanyofthistoanyoneotherthanclosefriendsandfamily.Yourrequestsaremytoppriority.
Anyway,thepictureintheDenverPostwaskindofsmall,soifyou'reinterestedinseeingalargerpictureofme,Ihaveattachedone.Itisofmehikingwalkinginariverinturkey.Anyway,I'dbettergo,butthankyouagainforyourresponse,andIlookforwardtohearingfromyou.
Ryan
P.S.Iwashappytoseethatyoumentionedspider-maninyourmessage:).
RyanandLancecommunicatedbyemailoverthesummermonthsfollowingtheirinitialexchangebutthelengthandfrequencyofmessagesdiminishedduringthattime.ButRyanwasbuoyedbyallthepositivesthathadhappened—hehadfoundLanceandconfirmedthatLanceisagoodperson.Lancewaskindtowardshim,andRyannowhadacompletemedicalhistory.Hewasjubilantalsotohavefreedhimselffromthecontrolofthespermbank.Soallwasmostlygood.Ryanremindedhimselfthatevenifcontactpeteredout,“whenIturn18Icangetonaplaneandgoshakehishand.”
Asitturnedout,Ryanwouldnotbewaitinguntilage18foravisitwithLance.InAugust,asurpriseemailarrived.Init,Lancewrotethefollowing,“WouldyouliketocometoCaliforniatomeetmeandyourgrandparents?”Thisunexpectedinvitation,withit’scleardeclarationthatRyanandLance’sparentsarekin,sentRyanandhismomover-the-moonwithexcitement.Theirstateofwonderincreased
exponentiallywhenLancesentdetailed,yetMissionImpossible-typeinstructionsfortheirtravels.DeterminedtokeepOprahoutofthepicture,Lancewassendingthemtoaspecificairport,withcontinuedinstructionstorentacarandcheckinataspecifichoteltoawaitfurtherinstructions.WendyandRyan,veteransofsome“ourlivesfeellikeamovie”momentswhentheywentonnationalTV,surelyfeltthisallthemoreastheydutifullyfollowedLance’sinstructions.
“Checkitout.Seethatkid?He’smyson.”
WendyrememberscascadingfeelingsofgratitudewhentheyarrivedintheirhotelroomandweregreetedbyabasketoftreatsandasweetnotefromLance’smom.Aretiredteacherandartprofessor,sheprovidedthemwithaneducator’swelcome—therewasadviceonwheretogoandwhattodoandjusttherightmixof“munchies”forateenageboyandhismom.Shealsoincludedherphonenumber.LaterthateveningWendycalledthenumber.Thetwowomenspokeforaboutanhour,withWendytakingdetailednotesforRyantoreadwhilehe(literally)bouncedaroundtheroom.Thefollowingafternoon,afteravisittothemuseumthatLance’smomhadsuggested,andwhilewaitinginlineatBananaRepublic,anothercallcame.CallerIDdeclaredthisonewasfromLance.
“Youanswerit.”“Noyou!”“Noyougetit.”“NoYOU!”WendyandRyanendedthiscomicalrapid-firephonevolleywithWendytakingthephoneandhearingLance’svoicefortheveryfirsttime.Hegaveinstructionstomeetinonehourinthelobbyofthehotel.WendyandRyanracedbacktothehoteltochangeandthenmovedrapidlyintomeeting-our-donor-for-the-first-timerehearsalmode.Ryanagainwas(literally)bouncingoffthewallsastheypreparedforthemeeting-jumpingfromonebedtotheotheranddoingflipsinover-the-topemotionalandphysicalexuberance.
“Wedecidedwe’dtimeitperfectlysothatwewouldexittheelevatorandcasuallystrollintothelobby.Thereisonlyonechancetomakeafirstimpressionandwewereonit.Wewantedthatfirstimpressiontogowell.Wewantedtolookalotmorenonchalantthanwewereactuallyfeeling.Sowerehearsed-wetooktheelevatordown,foundnoLance,tooktheelevatorupandrepeatedthisdrillseveraltimes.IwantedtoinstillsomehumorintoapotentiallystressfulscenarioforRyan,sothecomedyroutinereallyhelped.Ultimately,weoptedforperching
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ourselvesbehindtheadjoiningbar,gigglingallthewhile,andmakingour‘casual’entrancefromthatdirection.”Andthenithappened.
Youngmenwalkedinandoutofthehotellobbybutwhenhearrived,therewasnomistakingLance.HewastallandphysicallysimilartoRyanbuttherealgiveawaywashissmile.AshecamecloserWendynoticed,“hehasRyan’steeth!”andthen,“hehasRyan’seyebrows!”Andtheretheyweremomentslater;Wendyisshakingthehandofthemanwho“isjustasmuchrelatedtoRyanasIam.”Itwashumblingforhertobewith“theotherhalfofRyan’sDNA”andutterlymagnificenttobeabletowatchherson’sdreamcometrue.
Mom,sonanddonordadproceededtoarestaurantwhereRyanandLancepromptlyraisedtheirhandstotoucheachothertocompare,thentheirfeet.Wendyobserves,“Iguessitisa‘guything.’Thiswashowtheyfirstconnected.”She,meanwhile,wasfascinatedtoseehowsimilartheirwalkswereandastheystrolledtotherestaurant,Wendystayingbehindafewfeet,amusedathowotherwomenwerewatchingLance.
Sowhatdoesateenager,whohasbeensearchingforyears,saytothismanhehasfinallyfoundandwhatdoesaman,whoneversoughttobefound,saytohisnewlydiscoveredbiologicalson?Theirswas,notsurprisingly,simpleconversation.LanceaskedRyanaboutschool.Theyaskedeachotheraboutinterests,tastes,preferencesinmusic,food,etc.ThethreetalkedformorethananhourandthenLanceofferedupanotherunexpectedinvitation:tohisparent’shomefordinner.
DinnerwithRyan’sbiologicalgrandparents,likelunchwithLance,wentverywell.Wendyrecallsbothvisitsbeginningprimarilywithnervousness,giddinessandlightconversation—peoplesimplygettingtoknoweachother.Yes,therewasnomistakingthatLancehadidentifiedhisparentsasRyan’sgrandparentsbutatthisinitialvisit,therewasnodefiningorcategorizingofrelationships.Thiswassimplyatimeofgettingtoknow—andlike--eachother.InthefirstfewminutesWendygentlyandwithhumoracknowledgedthenervousnessfeltbyall,asLance’sdadquicklyofferedupaglassofwine.
Astheeveningunfolded,everyonebecamemorerelaxedandwhenthedoorbellrangtherewasevenamomentoflevitywhenLancequipped,“ThatbetternotbeOprah.”Infact,itwasthepizzadeliveryguy.
Althoughthingsgoteasierandmorerelaxedoverthecourseofthatfirstvisit,Wendysaysthatitwouldbealongtimebeforeshewouldseehersonrelaxandtrulybehimselfwithhisnewlyfoundgeneticfamily.“Foronething,thestakeswerehigh.Theycouldnothavebeenhigher.Ryanneededandwantedthemtolikehim.Foranother,weareverydifferentpeople.RyanandIandourfamilyareallexpressive,exuberantpeoplewhoarenottheleastbitreluctanttoshowourfeelings.Lanceandhisparentstendtobemorereserved.Atonepoint,yearslater,Ryan’sdonorgrandmothersaidtome,‘we’rejustnotveryfunnypeople.’”WhichWendyactuallythoughtkindoffunny.
ThefinalmorningofthatweekendvisitwasbreakfastagainatLance’sparent’shome.“IrememberthesmellofcookingFrenchtoast,watchingRyanandhisgrandfathersittingatthepiano,grandfatherplayingabeautifultune,withLancelookingon.”Wendyaddsthatitwasallwithasenseofunrealityanddisbeliefandsheerwonder.Thiswasafamilygatheringtogether.Thiswasallsonaturalandyetsowildlyunexpected.“TheicingonthecakeorthecinnamonontheFrenchtoastcamewhenLance’smomprancedintotheroomwearinganapron,spatulainhandandbegansinging.I’mnotsurehow—orif—Iheldbacktearsatthispoint.IwaswitnesstoRyan’smostferventdreams—andthensome—comingtrue.”
Morethanelevenyearshavepassedsincethisinitialmeetingandbynow,Lance’sparentsandRyanhavelongsinceestablishedagrandparent-grandsonrelationship.Howdidthisunfold?ItadvancedwhentheyallcametoColoradoforseveralvacations,includingforRyan’sgraduationandcelebratedwiththeKramerfamilyoverthecourseofafewdays.AnditwassurelycatapultedalongbyRyan’sdecisiontoattendgraduateschoolatUSC(obtainingthesameengineeringmaster’sdegreeasLance),averyshortdistancefromthegrandparent’shome.Itwasfurtheredalsobyhisdecisiontorentaplaceonlyabikerideawayfromthemandbytheirgraciouswelcomeandoffersofdelicioushomecookedmeals.AndRyan’sgraciousresponsetohisgrandfather’squestionsabouthisprinterhelpedalot.NolongerwasRyanwalkingoneggshells.Theywerealloffgoodbehavior.ThemanwhosomewhatreluctantlyintroducedhimselftoRyan’slandlordashisgrandfather,wasincreasinglycomfortablepepperinghisgrandsonwithcomputerandprinterquestionsandofferingvaluablegrandfatherlyadvice.
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RyanremainedinPasadena,livingnearhisdonorgrandparentsfor18months,finishinghismaster’sinengineeringandthenontoajobattheJetPropulsionLaboratory.Longsincesecureinhisrelationshipwithhisgrandparentsandtheywithhim.Meanwhile,WendyhadgrownclosewithRyan’snewgrandmotherandthatrelationshiphasflourishedovertheyears.“Oursisarelationshipthatcannotbedefinedbywords,”Wendysays.Shegoeson“itcannotbesaidtobe‘likeadaughter-in-laworlikeasister-inlaw.’Sheisthegrandmothertomychild,andIamthemotherofhergrandchild.It’saunique,standalone,oneofakindspecialbond.”
Ryan’srelationshipwithLancewasalsohelpedalongbygeographyandbymutualeffort.RyanmovedtoSanFranciscoin2014foranewjob,makingiteasierforhimtogettogetherwithLance“asfriends.”In2016RyantookajobatGoogle’sLifeSciencesdivisioncalledVerily.Thesedaysthetwomenmightmeetafterworkatabar,asSanFranciscansdoandtherearetimeswhenLanceincludesRyaninapartyorgatheringheathishouse.WendyhasonoccasionbeenpartofthesevisitsandonebaroutinginJanuary2015asastandoutevent.
“IwasintownvisitingRyanandLancesuggestedweallmeetforahappyhourpartyatabarindowntownSanFrancisco.WearrivedtoapackedhousebutspottedLanceatadistance.RyanandIbegansnakingourwaythroughthecrowdandaswegotclose,IheardLancesaytoafewguysaroundhim,‘Checkitout.Seethatkid?He’smyson.’”WendyrealizedthenhowmuchshehadlongedforLancetobeproudofRyanandthereitwas,loud,clear,determinedconfirmationofthatpride.“Checkitout.Seethatkid?He’smyson.”Wordsthatthismother,whohaddoneitall,hadwaited24yearstohear.
Itgotbetter.LancecontinuedandexpandedhispraiseofRyanandseemedtoabsolutelydelightinpeoples’responsestoRyanincluding,“Youguyslookalike.Areyoutwobrothers?”
AndasmuchasLancerelishedbraggingaboutRyan,hedidnot,foramoment,attempttotakeanycreditfromWendy.OnlytoohappytogivecreditwherecreditwassurelydueLancetoldallthatwouldlisten,“Shegetsallthecredit.Sheraisedhim.SheisRyan’smom.”
SiblingConnections—FoundandNotFoundonOprahand60MinutesandtheDSR
AlthoughfindinghisdonorwasRyan’soriginalgoalandremainedcentral,theDonorSiblingRegistry’snamespeakstothesignificancethatsiblingconnectionstookonalongtheway.Asofthiswriting,RyanandWendyareawareofsevenhalfsiblings.TheseincludethetwogirlswhosemomcontactedtheKramer’swiththeemailheading1058andincludeonehalf-brotherwhomtheylearnedaboutonlyrecently.However,itwastheconnectionsmadewithfouryoungwomenbetween2005and2008thathavealsobeenimportantinRyan’sexperienceof“findingmypeople.”
FirstcameTiffanyin2005.Sheis6monthsyoungerthanRyanandborntoasinglemotherwholatermarried.Intellinghershewasdonorconceived,Tiffany’smomadmonishedherfromeversearching.Butasabrightandcuriousteen,TiffanysearchedonherownandfoundRyan.Shecontactedhimandaflurryofexcitedemailsfollowedbetweenthetwohalf-sibs.Ryanwasjubilant,asuntilthispoint,theonlysiblingshehad“found”didnotevenknowtheyweredonorconceived.Wendy,however,wascautious.ShetoldTiffanythattheywouldhavetobringhermomintotheloop.
Timingcanbeeverythingandforatime,itseemedthattimingofferedTiffanyanidealwayoftellinghermom.Thepreviousfall,WendyandRyanhadbeencontactedby60MinutesandthetapeoftheirshowwasgoingtobeairedinMarch2006.TiffanytoldtheKramersthatshewouldwatchtheshowwithhermomandthatwhenRyancameon,shewouldsay,“thatboy—heismybrother.”Onboardwiththisplan,WendysentTiffanyanoteforhermom,explainingwhotheywere,andhowthisconnectionbetweenthetwokidscouldbeapositiveexperienceforall.SheandRyanwatched60Minuteswithmultifacetedexcitement—theywerethrilledtohaveyetanothernationalandrespectedvoiceandtheywereequallyeagertogetTiffany’scall.
First,thegoodnews.The60Minutesshowwasahugesuccess.Itbrought28,000visitorstotheDSRinMarch,upfromtheusual8,000.Andmoreimportant,inatypicalmonththereare30-50matches.InMarchof2006538peoplematched.AnotherbigtriumphforRyanwasthathewasabletosuccessfullynavigatesomedelicateterritoryofprivacyandsecrecy.Lancehadmadeitveryclearthathewouldcutoffcontactif
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Ryanacknowledgedhehadfoundhimbutawarethat60Minuteswouldhavetoaskthedonorquestion,Ryancameupwiththefollowingresponsetothe“didyoufindyourdonor?”question.“IprefernottotalkaboutmypersonalsituationwithmydonorbecauseitcouldcompromiseanyfuturecontactImighthavewithhim.”CorrespondentSteveKroftagreedthatthisanswerwasacceptable.
Nowthetoughnews…thecallfromTiffanynevercame.Astheywaitedforthephonetoring,WendyandRyancametorealizethatsomethingmusthavegonewrong.Indeed,Tiffany’ssweetandinnocenteffortstosharehergoodnewswithhermomfellonharshears.Hermotherdeclared,“Thosepeoplearenotyourfamily”andwiththat,tookTiffany’sphoneandshutdownherMySpaceaccount.AfewmonthslaterTiffanysentWendyalovelyMother’sDaycardaccompaniedbyasensitivenote.TherewereafewadditionalcommunicationsbutTiffanyeventuallystoppedallcontact.
Ryanhasalwaysfeltdifferent—hewasexceptionallyintelligentanddonorconceived—andhelongedtoconnectwithotherslikehim.“Likehim”couldbethroughgeneticconnectionsbuttheirexperienceontheDSRremindedbothWendyandRyanthatthiswasnotallaboutgeneticconnections:simplymeetingotherswhowerebroughtintothisworldthroughanonymousdonationwouldbehelpful.Anditwaswiththisknowledgeofwhatitmeantto“findhispeople”thatRyanbecameanhonorarymemberofDonor66’soffspringgroup.Ithappenedsomethinglikethis…WendyreceivedacallfromamomwhohadtwochildrenthroughDonor66.ShehadconnectedwithamomwhosetwingirlsalsocamefromDonor66.ShewascallingtosayhowgratefulshewastotheDSRandtoaskadviceaboutthefamily’sfirstmeeting.Andthencamealongtwoothermomsandtwomorekids.SixDonor66offspringandRyan.FourDonor66momsandWendy.TheyalllivedintheDenverareaandtheyenjoyedspendingtimetogether.ThepiecesofRyan’scomplexidentitypuzzlewerebeginningtofittogether.Itwasmeaningfulforhimtobewithotherswhohadthedonoroffspringexperienceregardlessofwhotheirdonorswere.Andhecontinuedtoseekgeneticconnections.Hewouldfindhispeopleinbothgroups.
GettingtogetherwiththeDonor66groupwasbeeneasyforRyanandWendyastheyliveintheDenverarea.Theygottogetheronafairlyregularbasis
enjoyingbarbecues,mediaevents,holidaycelebrationsandinsomeinstances,strongfriendships.Althoughnotconnectedgenetically,forRyantheDonor66teensandyoungadultsareverymuchhispeople.
February2007:Ryanbecomesthe2,910thpersontobematchedontheDSR.EnterAnna.
Wendywasatworkwhenthematchcameonhercomputerscreen.Herinitialsurpriseanddelightwassooncloudedbyfear.SeeingthatAnna,whowasbornthreeyearstothedayofRyan,wasonly13,WendyfearedthattheywouldhaveyetanotherTiffanysituation.ShewasrelievedtoquicklylearnthatAnna’sparentswereonboard,somuchsothatithadbeenwithherdadthatshesignedontotheDSR.
Anna’smom’sinitialemail:
DearWendy,
Mydaughter,Annajustrespondedtoapostingbyyouregardingdonornumber1058.Thisisthefirsttimewehaveexploredtheregistryandareveryanxioustofindoutifyoursonisindeedamatch.
MyhusbandandIallowedAnnatoregisterherselflastnight,withoursupervision.Sheis13yearsold,andwasbornonMay22nd,1993.OurdonorwasanEngineeringstudent.Hewasbornin1967.Hehasonebrotherwhoisapilot.Doesanyofthissoundfamiliartoyou?
Asyoucanimagine,wearelookingforwardtoaresponseandhopetohearfromyousoon.'
Regards,
AnnMarie(Anna'sMom)
Robert(Anna'sDad)
“WhenIreadthisIwasgiddy.Andinshock.AnnMarieandIspokebyphoneandduringourcall,Itoldherthateventhoughwe’reessentiallystrangers,thatwesharedsomethingsoprecious.Wequicklysharedalittleabouteachofourkids,andAnnaaskedtospeakwithmesothatshecouldaskquestionsabouttheotherhalfsiblingsthatweknewabout.”
LaterthateveningRyanandAnnaconnectedonlineviainstantmessaging.OverthenextfewweeksAnnMarieandWendyhadseveralphonecallsandeventuallytheyallhadagroupphonecall.TheytalkedaboutmeetingandallwantedthattohappenASAP.
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ABC'sPrimetimehadexpressedinterestinupdatingastorythattheyhaddonemorethanfouryearsagoonRyanandthebeginningsoftheDSR,andtheythoughtthatRyanandAnna'smeetingwouldbeaperfectupdate.
Amonthlater,WendyandRyanflewtoNYCandalmostinfrontoflivecameras(thecamerafolkswerethankfullyabitofftrack),AnnaandRyanmetinCentralPark.Wendyremembersitasifwasyesterday,“Wewereallextremelyexcited.RyanboughtAnnaaUniversityofColoradosweatshirt.ThemorningofthemeetingeachfamilyhadacameracrewtowalkwithtowardseachotherinCentralPark.Theyhadsetameetingplace,butbecauseofdisorganization,ourtwofamiliesbasicallybumpedintoeachotherwalkingalongtheparkroad.Itwastremendous.Weallhugged,andthesmilesonAnna'sandRyan'sfacesweretelling.Therewasanundeniablebondandrecognitionofthefamiliarinoneanother.Theparentswerescouringthefacesofthekids,lookingforsimilarities.Itwasveryemotionalforus,andamazingtomeetthisyounggirlwhohadbitsandpiecesofmysoninher.IwasoverwhelmedwithgratitudeforAnna'sparentsthattheyhadbeenhonestwithAnnaandhonoredhercuriosityandneedtosearchforandconnectwithRyan.WhileAnna'smomandIhadamoreobviousbond,IfeltextremegratitudeforAnna'sdad.IwassoimpressedthathehadputanypossiblefearsorconcernsaboutAnnafindingbiologicalfamilytotheside,insteadhonoringhisdaughter'sneedstoconnecttothatinvisibleandunknownpartofherself.
“Wespendthefirsthourorsoaskingeachotherquestions,takingpicturesandcomparingnotes.RyanandAnna'ssmilesseemedpermanentlyadheredtotheirfaces.Therewasasenseofpeaceaboutthebothofthem.
“Wespentthenext48hoursgettingtoknoweachotherandmarvelingatthesimilarities(anddifferences)inRyanandAnna.Itwascleartous,thateventhoughwehadjustmet,thatwewereconnectingasfamily.Strangetobegettingtoknowfamilyforthefirsttime.Wewerelayingthegroundworkforaconnectionthatcouldlasttheirlifetimes.WemadeitclearthatRyanandAnnawouldbedefiningtherelationshipandthattherewasnopressureforittolookanycertainway.Wealsomadesurethekidsknewthattheirrelationshipat13and16wouldcertainlychangeanddevelopastheyyearswenton.Fornow,theparentswouldmostlikelymakethelogistical
planning,butthiswouldonlybebasedonthedesiresofbothAnnaandRyan.AnnaworeherCUsweatshirtwithpride,despitethe75degreeweather.”
ThetwofamiliessharedalovelyweekendandRyanfinallyhadhislongawaitedhalfsibling.AyearlatertheygottogetherasecondtimecelebratingRyan’s18thbirthdayandAnna’s15th.TheywouldbetogetheragainforRyan’scollegegraduationwhereAnnaandherparentswouldgettomeetLanceandhisparents.AlthoughLancehadearlieron“banned”photos,WendyishappytoreportthatshehasanynumberofphotosofanynumberoffamilymixesatRyan’sgraduationparty.
2008andanotherOprahshow.Aswiththefirst,theshowbroughtmanynewmemberstotheDSRandamongthemwereNatalieandKristinawhoturnedouttobeRyanandAnna’shalfsisters.TheirmomhadwatchedtheOprahshowandreachedouttoWendyabout“thatladyandhersonIjustwatchedonOprah,”notfullyrealizingthatWendywas“thatlady”!ThemompostedhertwodaughtersontotheDSRassheandherhusbandwereinfullsupportoftheirrighttobecuriousandtoknowtheirdonorkin.SincetheylivedinBostonandAnnaandherfamilywereinNewYorkandallwantedtomeet,WendyandRyanfleweastforanotherNYmeeting.
“BythistimeRyanandAnnawerepros.”Wendyremembers.“TheyledthewayandmadeiteasierforNatalieandKristina.TheyprovidedthegirlswithmedicalinformationandansweredquestionstheyhadaboutLance.Theyalsohelpedsetthepaceandtoneforhowthefourteenswouldgettoknoweachotherandbegintoestablishsiblingbonds.Gameswereplayed,andteenshungout,asteensdo.AsRyanhadlongsincelearned,“Itbeginswithsimpleconversation.”
ItwouldbesonicetobeabletoreportthatallproceededsmoothlyanduneventfullywithRyanandhishalfsistersbutthishasbeenastoryofjoyanddisappointment,unexpecteddelightsandsomebumpsintheroad.Whiletheyhaveenjoyedsomegoodtimestogether,includingaweekendinwhichallthreeEastcoastgirlsspentaweekendattheKramer’shomeinColorado,onebumpintheroadcameviaDNAtesting—theverytoolthathadledRyantoLance.
In2012WendywascontactedbyanewDNAtestingcompanywhowereofferinganewtestingtoolthatcouldbeofgreatbenefittodonorfamiliesin
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particular.Thecompany—whichwillsurelygounnamedhere—neededthreedonorfamilygroupstotestthemothersandthehalfsiblings.WendyandRyansignedon,Annaandhermomjoinedin,asdidNatalieandKristinaalongwiththeirmom.ThecurveballthatnooneeversawcomingwasthenewsthatAnnawas“notgeneticallyrelated”toRyan,NatalieandKristina.Thisscientificuntruth,testedtwice,anddeclared“100%accurate”bythenotedscientistattheDNAcompany,sentalltheparticipantsintoatailspin.ItwasconfusingandhurtfultoallbutmostdifficultforAnnawhohadherunfoldingidentitytemporarilychallengedandsnatchedawayfromher.UltimatelyandonlyafterWendy’ssheergritprevailed,Anna’sgeneticconnectiontotheotherswasconfirmed.
Aswithmanyhalf-siblinggroups,distancecanbeamainfactorwhendeterminingtheprogressionandclosenessofnewlyfoundgeneticrelatives.Havinghalfsiblingsspreadacrossthecountry(ortheworld)canmaketheconnectionsmoredifficulttodeepen,asspendingtimetogetherismorechallenging.Aswithanyfamily,it’sthepeopleyouseemostoften,andthosewithwhomyouhavethemostincommon,thatyouseemtoholdmostclose.Ryanandhishalfsistersnowhavebusyadultlives,soget-togethersjustdon’thappenasoftenaseveryonewishes.
AndHereWeGoAgain…
Overtheyears,WendyandRyanhavehadmanyconversationsabouthowmanysiblingshemighthave.Theyhaveworkedwithvariousnumbersandsomehowlandedon“between20-30.”Wendyexplainsthattheyreallydon’tknow.Atonepoint,CaliforniaCryobankhadtoldthem“one.”Thenthetalkativewomantheretoldthem“many.”ThebanktoldLance12.Thosewerethereports.Thentherewerethefacts.Lancedonatedthreetimesaweekforfiveyears.Eachdonationcouldhavebeensplitintobetween8-24sellablevials.WhenWendyandRyanranthenumbers,theyfoundthattherecouldhavebeenasmanyas18,000sellablevialsofsperm.“We’llgowith20-30.”Wendysaid.
In2008Ryanwasawareof6halfsisters,thethreehehadmet,thetwowhoseparentswouldnottellthemthattheywereconceivedwithadonor,andtheonewhosemotherhadforbidallcontact.Wendysaysthatinsomeways,thiswasenough.RyanhadhadhisquestionsansweredandhealsofeltthatheandtheDSRwerevisibleenoughthatotherscouldfindhim.“Stilltherewassomecuriosity,”Wendysays.“Whyall
girls?”Ryancouldn’thelpwonderifhewastheonlymaleoffspring.August2016:enteranewhalfbrother.
TheemailcameAugust22,2016.Theheadingwasfamiliar.“Donor1058?”Itwasanothermotherwriting.ShehadreadanarticleaboutWendy,RyanandtheDSRintheNYTimesandasked,“Isyouractualdonornumber1058?”Wendyrepliedthatitwasandwithinmomentsthetwomomsweretalkingbyphone.Theothermotherexplainedthatshehadason,whoisayearyoungerthanRyan,whodidnotyetknowhewasdonorconceived.HisparentswouldsoonbetellinghimabouthisconceptionandaboutRyan.
Wendywouldsoonlearnthatitisverydifferentwhenpeoplearematchedasadultsthanaschildren.Andsheobserves,“mendothingsdifferentthanwomen.”WhileWendyandRyan’snewhalfbrother’smomareformingareallynicefriendshipandhaveenjoyedlongtelephoneconversations,Ryanandhisnewhalfbrotherhavethusfarhadlimitedcontact.Theyhaveexchangedemails,andspokenbyphonebutneitherseemseager—atthispoint—formore.Althoughcloseinageandsharing½theirDNA,theyareindifferentplacesintheirlivesandhavehadvastlydifferentlifeexperiencesregardingdonorconception.
WhattheexperiencewiththenewhalfbrotherandhismomconfirmsforWendyisthatdonorconceptionconnectionscomeinallflavors.Sheisespeciallyfondofthisnewmomandtheyseemtohavealotincommonthatgoesbeyondtheirsons’DNA.Wendyhopestheywillforgestrongbonds.InsomewaysthisissimilartoherexperiencewithLance’sparents—sheisclosewiththegrandmother,RyanisclosewithLanceandhisparentsandRyan’shalfsistersandtheirfamilieshavenoon-goingcontactwithLanceorhisparents,althoughonehalfsisterrecentlyexpressedinterestinreachingouttoLanceandhisparents.Wendyisfriendlywithoneofthemoms,butnotsomuchwiththeother(sincetheDNAdebacle).Allflavors.Allshapesandsizes.Everchanging.
LessonsLearned:WhyTellOneFamily’sStory
Lookingbackatthe26or16-yearpointdependingonhowyoucount(fromRyan’sbirthorfromthebirthoftheDSR),WendyandRyanhavelearnedalotthattheyfeelisrelevanttootherdonorfamilies.Whileeveryfamilyisdifferent,thesearesomeofthemessagesthattheywanttopassontoothers.
1. Parentsneedtolistentoandheartheirchildrenandtrusttheywillguidethem.Astheylookback
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ontheoriginsoftheDSRandonRyan’ssearchforhisdonor,WendyandRyanbothacknowledgethattheirshasbeenajourneyinwhichshefollowshisleadortheymoveforwardtogether.InWendy’swords,“RyanandIheldhandsandjumpedofftheclifftogether.Wedidn’tknowwhowewouldfindorwhowouldfindusbutwewereabletotakeeachstep—andmakeeachleap--becausewehadeachother’shand.”
Sadly,WendyandRyanhaveencounteredparentswhoinWendy’swords,“actoutoffearnotlove.”“Itisnotenough,”Wendyobserves,“forparentstotelltheirchildrentheyweredonorconceived.Theymustalsoacceptandhonortheirchild’srighttobecurious,theirrighttosearch,theirrighttofindandtoconnectwiththeirfirstdegreegeneticrelatives.”
2. Wendyisoftenpuzzledwhenpeopleaskherwhyshedidn’tclosedowntheDSRwhenRyanfoundhisdonor.Sheisequallypuzzled,whenpeopleassumethatforher,theDSRwassimplyabusinessventure.ItwasneitherabusinessventurenoratooljustforRyan.AstheDSRhasunfolded,ithasbecomecleartoWendyandRyanandallthoseactiveinit,thattheDSR’smissionextendsbeyondsearching.Itincludessupportforthedonorfamilycommunity,educationandadvocacy.Wendycaneasilyrememberatimewhenspermdonorswereoftenwomen’sgynecologists,whenspermbanksofferedalmostnoinformationaboutdonorsandsurelywhennooneconsideredtherightsofdonoroffspring.Changewouldnothavecomeandwillnotcontinuewithouteducationandadvocacy.
3. ManyassumethatthedonorconceivedpeoplepostedontheDSRareonlyinterestedinknowingaboutwhotheirunknownbiologicalrelativesare.Formanythough,it’smuchmorethanthat.Itisadesiretobeknown.Ryanwantedtofindhisdonorbutmoreimportantly,hewantedhisdonortoknowthatheexisted.Italsomatteredalotthathecouldseekandsearchonhisowntermsandnotbedictatedbythespermbank’sseeminglyselfservingrules.Theage18isarbitrary,asmanydonor-conceivedpeople,likeRyan,haveestablishedenrichingrelationshipswiththeirdonorslongbeforetheageof18.Ryandidnotfeelitwasrightforaspermbanktowithholdessentialinformationabouthisancestryand
biologicalrelatives,notevenofferingupapossibilityofmutualconsentcontact.
4. Donorconceptionrelationshipscannotbenamed.Peoplemaytrytosay,“Itislikeaspecialaunt”oritis“likeaclosecousin”butdonorkinshipcannotbenamed.Donorfamilyconnectionsrelyonmutualconsent.ThiswassomethingRyanfullyunderstoodatayoungage.AsWendyandRyanidentifieddonorsibs,thereweretimeswhentherewasmutualconsentandsadly,timeswhenitwasabsent.
IthasalsobeeninterestingtoWendyandRyantoseehowRyan’shalfsiblingshaverespondedtoconnections.Anna,forexample,metLanceandhisparentsatRyan’scollegegraduationandallsharedawarmfamilyweekendtogether.Andyet,toWendyandRyan’sknowledge,therehasbeenlittlefollow-up.Lance’sparentsareveryclearthatRyanistheirgrandson.Infact,Lance’smomsaysshewentthroughagrievingperiodoverhavingmissedthefirst15yearsofRyan’slife.Bycontrast,theydonotseemtoregardAnnaastheirgranddaughter,nordoesshereachouttothemasgrandparents.Takeawaymessage?Sometimesgeneticconnectionsleadtoastrongsenseofkinshipandothertimes,theydonot.
5. Livinginan“instantaneous”timemakesitdifficulttowait.BeingontheDSRinvolveswaiting.Notforall.Notallthetime.Butlongstretchesoftimecanpasswhenoneissimplywaiting.RyanKramerisExhibitA—hefoundedtheDSRandwaitedsevenyearstobecomethe2,910donoroffspringtomatch.HishalfsisterAnnamatchedtheverysecondshejoinedtheDSR.
6. Navigatingdonorrelationshipsalwaysinvolvesthebalancingofprivacyandsecrecyandsortingoutwhen,ifever,the“rights”ofthedonorsupersedetherightsofthechild.
7. Languageispowerfulandcanbeunsettlingfordonorfamilies.Wendy’sapproach,fromthestart,wastohaveRyantaketheleadwithlanguage.Fromthetimehewasinpreschool,shelistenedashetriedonandexperimentedwithwaystotellhisstory.Sherealizedalongthewaythatheneededtotrywordson,toexperimentwiththem,todetermineforhimself,whatfeltright.Sheknewthatwordsarejustwordsandtheydonotdefinerelationships.Shestoodbyas
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Ryantriedonwordslike“dad”,“donordad”and“father”and“grandparents,”knowingalwaysthatnothingRyanwouldsaywoulddiminishhisrelationshipwithher.Infact,atonepointhesaidtoher,“YouknowthatIhaveonlyoneparentandthatisyou.”Therehavebeentimes,also,whenshehasseenthatwordscanbeusedforconvenience.Forexample,RyanwasatLance’shomeforasmallpartyrecently.Anotherguest
walkedinandsaid,“HeyRyan,where’syourDad?”Ryanrememberspausingforjustamomentandthenrespondedwithasmile,“He’sinthekitchen.”Wendy’sadvicetootherdonorparentsistotakenoticeifthereisawordthatreallytroublesthemandifso,tothinkaboutwhyitsetsthemoff.
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