Sharing genetic origins information in third party assisted conception: a case for Victorian family values?

Sharing Genetic Origins Informationin Third Party Assisted Conception:A Case for Victorian Family Values?

Eric BlythSchool of Human andHealth Sciences,University ofHuddersfield

In the United Kingdom (UK) approximately 2500 children are born

each year as a result of third party assisted conception. Since formal

record keeping by the statutory regulatory body, the Human

Fertilisation and Embryology Authority, began in 1991, the total

number of children known to have been born from all forms of third

party assisted conception exceeds 13 500. Although the records

contain information about these children's genetic origins, including

the identity of the donor, current legislation severely circumscribes

their ability to access this information and, save in very exceptional

circumstances, they are not permitted to learn the identity of the

donor. Consequently, they are the only individuals in the UK whose

inability to learn the identity of both their genetic parents is formally

endorsed by statute. This paper identifies different approaches to

exchanging genetic origins information in third party assisted

conception. It provides a critique of the model currently in force in

the UK and advocates its replacement by a system that more

closely resembles that introduced in Victoria (Australia) in 1998.

Copyright # 2000 John Wiley & Sons, Ltd.

Secrecy, anonymity and third partyassisted conception

Historically, third party assisted conception has generally beenaccompanied by secrecy. In the first recorded instance of donorinsemination (DI) cited by Gregoire and Mayer (1965), awoman was inseminated while under anaesthetic and at thetime neither she nor her husband were informed that insemina-tion had taken place. Only later was her husband toldalthough, apparently, the truth was never revealed to thewoman. Until recently, `conventional wisdom' indicated thatsecrecy remained the `best' policy (see, for example, RoyalCollege of Obstetricians and Gynaecologists, 1987).

To a large extent, the ability of a couple who had a childfollowing DI to `pass as normal' also encouraged the practice ofsecrecy. For DI recipients there were self-evident advantages in

Copyright # 2000 John Wiley & Sons, Ltd.

CHILDREN & SOCIETY VOLUME 14 (2000) pp. 11±22

Correspondence to: Eric Blyth,

School of Human and Health

Sciences, University of

Huddersfield, Queensgate,

Huddersfield HD1 3DH.

not disclosing their recourse to third party assisted conception. They could avoidunwelcome responses from others, which could range from `mere' inquisitiveness to overtdiscrimination. They could avoid potential threats to the family that might be activatedthrough revelation of genetic discontinuities and unequal genetic relationships between thechild and each of his or her parents. Since parents were unlikely to have much informationabout the donor, simply not telling the child anything obviated the problem of being facedwith questions that they would be unable to answer. Secrecy could also be supported as ameans of minimising the risk of the donor intervening in the life of the family or interferingin the upbringing of his genetic child. Secrecy, and even withholding information about theoutcome of any donation, was seen to be of benefit to the donor also, avoiding both legaland emotional responsibility for any ensuing child.

While secrecy and anonymity are clearly not synonymous, preserving the anonymity ofdonors was seen to serve similar purposes. In practice the maintenance of secrecy sub-sumes that of anonymity, and for many years both secrecy and anonymity invariablycharacterised the practice of DI.

Explicit challenges to received wisdom began to emerge in the 1980s. First, in 1984, a Lawon Insemination was implemented in Sweden, drawing liberally on adoption practicewhich had begun to acknowledge the needs and rights of adoptees to have informationabout their birth origins (Sverne, 1983).1 The Swedish law requires DI service providers tokeep a record both of donors and of children born following the use of DI and gives donoroffspring, at `maturity', a legal right to be informed of the contents of the record, includingthe identity of the donor. Parents who have children following DI are expected to tell thechild that they were born as a result of such treatment às early as possible and at a timethat they themselves find suitable' (Jonsson, 1988, p. 151).

A second threat to the presumption of secrecy and anonymity accompanied the develop-ment of egg donation and of surrogacy. The increased discomfort and risk experienced byegg donors compared to their male counterparts meant that different approaches torecruitment needed to be adopted by service providers. Egg donors are also more likelythan sperm donors to be known to the recipient. While service providers, therefore, havemaintained the `necessity' of anonymity for DI, they have relaxed this for egg donation(International Federation of Fertility Societies, 1998, pp. 10±11). Anonymity in surrogacy ispossible where a woman offers to become a surrogate mother for erstwhile strangers andthe arrangement is mediated by an agency. However, this is not the practice in the UKwhere all such arrangements, where they do not involve an arrangement between friendsor family members (who will clearly be known to each other already), involve directcontact between the surrogate mother and commissioning parents.

1While legislative change in Sweden was clearly influenced by developments in adoption, the analogy between adoption and

third party assisted conception, and the lessons which may be drawn from adoption for sharing genetic origins information, have

proved contentious. Shenfield, for example, claims that the two are not comparable because, while the `children born of gamete

donation have been wanted long before their conception by their psychosocial parents', at least one of whom is normally also the

child's genetic parent `. . . an adopted child, by contrast, was first abandoned by two biological parents' (Shenfield, 1999).

Consequently, Shenfield claims there is no moral imperative on parents to tell their donor conceived children the truth about their

origins. Preoccupation with the existence of any analogy between adoption and donor assisted conception, however, risks missing

the central point; that is whether family relationships are best built on a basis of trust and truth or on one of deception ( for

example, Merricks, 1998).

12 Eric Blyth

Copyright # 2000 John Wiley & Sons, Ltd. CHILDREN & SOCIETY Vol. 14, 11±22 (2000)

A third factor militating against secrecy and anonymity is the newly-articulated voice ofindividual donor offspring and the growth of support groups in different parts of theworld arguing for the provision of more information about donors both for the recipientsof donated genetic material and for donor offspring (see, for example, Donor ConceptionSupport Group of Australia Inc., 1997; Blyth, Crawshaw and Speirs, 1998).

Managing information exchange in third party assisted conception

In the absence of legislation or professional codes of practice either enforcing the collectionand exchange of certain information or expressly limiting or prohibiting its exchange,levels of information exchange are usually determined by individual practitioners,although donors and recipients may also contribute to such decisions. Pennings (1997)provides an illustrative example of such practices in his account of a `double track' policy,whereby donors may choose to be identifiable or anonymous. Prospective recipients maythen choose to receive the gametes of either an anonymous or identifiable donor. This givesoffspring themselves no choice, and they would have to live with the choice made by theirparents.

Exchange of available information can be managed in one of three principal ways. First,information identifying one or more of the individuals concerned may be exchanged.Second, information about some or all parties but which does not identify the individual(s)concerned may be exchanged. Such an arrangement will usually be based on the existenceof formal records to which access is restricted. Third, elements of each of these models canbe combined to enable one party to receive information identifying others, althoughexchange of identifying information would not be reciprocal ( for example, where theidentity of the donor is known to the recipients and/or the donor offspring but where thedonor does not know the identity of the recipients or donor offspring).

Information provided by the donor is given at the point of donation and may not beaccessed by donor offspring, if at all, until many years later. Arrangements could,therefore, be made for updating this information, either on a regular basis or in the light ofrelevant new information becoming available, especially any health issue that might have agenetic basis. Similarly, arrangements for the donor to receive information about donoroffspring could also make provision for the updating of information, and any relevanthealth information could be given to the donor and to any other recipients of his or hergametes. It is also self-evident that the availability of information does not mean that itspotential recipients will necessarily access it. An obvious example would be where a donoroffspring is unaware of his or her status and is consequently unaware of any relevantinformation that may be obtained or how to obtain it.

Bearing in mind the foregoing comments, the following specific elements of informationexchange may be identified:

. some non-identifying information about the donor is made available to the recipient(s)to pass on to donor offspring when they consider it appropriate to do so

. some non-identifying information about the donor is made available at the request ofdonor offspring. Countries which have introduced legislation to permit donor offspring

Sharing Genetic Information in Third Party Assisted Conception 13


access to such information have usually specified the age at which such access may bepermitted, for example, 18 in the UK

. some non-identifying information about the recipients is made available to the donor

. some non-identifying information about the donor offspring is made available to thedonor

. information identifying the donor is made available to recipients at the discretion of thedonor

. within the context of the norm of anonymity, information identifying the donor may bemade available in specified circumstances. Several countries (including the UKÐseelater) provide for such exceptions. For example, in the Netherlands, the donor's identitymay be disclosed when failure to do so could result in the donor offspring suffering from`serious psychological harm' (Ministerie van Justitie, personal communication, 1997).Similarly, the Spanish Law on Assisted Reproduction Techniques 1988 provides fordisclosure of the donor's identity in èxceptional circumstances' when the life of thedonor offspring is at risk

. information identifying the donor is made available at the request of donor offspring.Three states have introduced legislation permitting donor offspring access to suchinformation at age 14 (Austria), unspecified `maturity' (Sweden), and 18 (Victoria,Australia).

Information exchange in the UK

The Human Fertilisation and Embryology Act 1990 prescribes provisions for the exchangeof information in third party assisted conception in the UK. This draws on the recom-mendations of the Warnock Committee which expressed concern that secrets in familiescould ùndermine the whole network of family relationships' and believed that it was`wrong to deceive children about their origins' (DHSS, 1984, p. 21). Nevertheless, theCommittee was also concerned about ìntroduc[ing] the donor as a person in his own right'(DHSS, 1984, p. 24). Consequently, it did not think that donor offspring should be able tolearn the identity of the donor, recommending instead that, at the age of 18, donoroffspring should have a legal right of access to `basic information about the donor's ethnicorigins and genetic health' (DHSS, 1984, p. 24).

Donors who have donated gametes or embryos in accordance with the 1990 Act's consentprovisions are exempt from legal and financial responsibility towards any child bornfollowing use of their gametes or embryos. Centres providing treatment licensed under theAct are required to maintain records of donors and recipients of donated gametes andembryos and of children born following such treatment, and to provide this informationfor inclusion on the Human Fertilisation and Embryology Authority (HFEA) Register ofInformation. Donor offspring who are contemplating marriage have a right to request theHFEA to provide any information indicating that they might be genetically related to theirproposed spouse. The Act also gives donor offspring who have attained the age of 18 aright to access information about their genetic origins held on the Register, the nature ofwhich is yet to be determined by the Secretary of State. During parliamentary debate onthe then Human Fertilisation and Embryology Bill, Secretary of State Kenneth Clarke madeclear the government's support for donor anonymity, while acknowledging that opinionmight well change, as a result of which `the anonymity of donors could be lifted'

14 Eric Blyth


(Clarke, 1990). However, the Act specifically prohibits the introduction of retroactivedisclosure of donor identity, a measure requiring new primary legislation.

Currently, the only circumstances under which the identity of the donor may be revealedare by order of a court in the ìnterests of justice' or in connection with any legalproceedings that may be initiated as a result of a child being born with a congenitaldisability (Human Fertilisation and Embryology Act 1990, Ss 34±35). In the meantime,details about the donor's height, weight, ethnic group, skin colour, eye colour, hair colour,occupation and interests are provided by centres to the HFEA through completion of HFEADonor Information Form (91) 4. This form also includes a small space for donors to provide àbrief description' of themselves which could be given to recipients and to any childsubsequently born. The HFEA advises centres to encourage donors `to provide as much . . .non-identifying biographical information about themselves as they wish' (HFEA, 1998,p. 23) and suggests that such information could include `further information about thedonor's interests, family background, childhood, region of origin, etc.' and that centresshould offer recipients the opportunity to see any additional information provided by thedonor prior to treatment (HFEA, 1994).

Of necessity, whatever information about the donor that the government decides can bemade available to donor offspring will be limited to that contained on the Register andthere is evidence of considerable variability between centres in the amount of donorinformation forwarded to the HFEA (Blyth and Hunt, 1998).

Legal entitlement to information presumes that donor offspring will be told about thenature of their conception. However, although there is evidence that some serviceproviders (Winston cited in Wavell, 1997) and the HFEA itself (Johnson, 1997) are seekingto encourage greater openness about donor assisted conception, this is resisted by otherproviders ( for example, Shenfield and Steele, 1997) and it appears that few recipientsintend to tell their donor-conceived children about their status (see, for example, Cook andothers, 1995).

Legislation treats surrogacy differently. As the surrogate mother is considered to be thechild's legal mother, commissioning parents need to apply to a court to acquire parentalresponsibility for themselves. Prior to the implementation of the 1990 Act, this wastypically secured by means of adoption. However, the Act introduced provisions allowinga commissioning couple to apply to a court for a Parental Order, as an alternative tomaking an application to adopt, in respect of a child born following a surrogacy arrange-ment. For the individual subject to a Parental Order, as in adoption, the law gives right ofaccess to his or her original birth entry. In England, Wales and Northern Ireland this will beat age 18, although in Scotland, not only will access to the original birth record be availableat age 16, but Scottish law also permits access to the court files pertaining to the ParentalOrder application.

More equitable alternatives?

One of the problems of pioneering legislation, such as the 1990 Act, is the limitation thisplaces on learning from the experience (including mistakes) of others. At the time the UKparliament debated the Human Fertilisation and Embryology Bill, only Sweden had



implemented legislation removing donor anonymity, although subsequently both Austriaand Victoria (Australia) have introduced legislation affording donor offspring broadlysimilar entitlements.

In both Sweden and Austria, DI is the only form of third party assisted conception that islegally permitted. Swedish centres are required to keep records containing informationabout the donor's name, the results of screening tests, details of eye and hair colour, andmay also record other information such as: `the donor's profession, interests, etc.'(Regeringskansleit (Swedish Ministry of Health and Social Affairs), personal communi-cation, 1998). At `maturity', donor offspring have a legal right of access to the recordsrelating to their conception. Austrian clinics providing DI are required to record thedonor's name, date of birth, birth place, nationality, residence, and the names of hisparents. At the age of 14 donor offspring have a legal right to learn the identity of thedonor.

Given the limited information that donor offspring in Sweden or Austria may learn aboutthe donor other than his identity, it is self-evident that if they want more information aboutthe donor and their own genetic heritage, they will be obliged to try to make direct contactwith him.

Of course, it may be that donor offspring want information, but not a personal relationship(see also J. Anderson and J. Blood, 16th World Congress on Fertility and Sterility, SanFrancisco, 1998). Lauren, a young Australian donor offspring, is very clear about theinformation she would want:

medical history, racial origins and physical characteristics; whether he and his parents are stillalive; an account of his life experience; and, information concerning half-siblings born throughdonated genetic material and through other relationships. In this category I seek informationabout: the number of half-siblings, their age, gender, and whereabouts. Yes, my list doesinclude updated information. For me the link with my donor does not just stop at the time ofmy conception. Information about the donor's entire life should be constantly updated until theoffspring wish to access the information, and even after that (Lauren, in Donor ConceptionSupport Group of Australia Inc., 1997, pp. 26±27).

Currently, detailed information such as this would be denied to most donor offspringthroughout the world.

At the beginning of 1998 the government of the state of Victoria in Australia implementedgroundbreaking legislation, the Infertility Treatment Act 1995 (hereafter `the 1995 Act'),which extends rights of access to information following donor assisted conception in twospecific areas: (1) the amount of information concerning the donor, other than his or heridentity, that may be made available to donor offspring and (2) the extension ofinformation sharing to other parties (including the donor, the recipient(s) of the gametes orembryo, and the descendants of donor offspring). The 1995 Act requires treatmentproviders to collect specified information about donors (see Table 1) and provide this forthe Central Register maintained by the state Infertility Treatment Authority.

A donor offspring born as a result of a treatment procedure where the donor has givenconsent to the use of gametes or embryo(s) under the provisions of the 1995 Act may, uponreaching the age of 18, request the Authority to provide either identifying or non-identifying

16 Eric Blyth


information about the donor. Any descendant of the donor offspring is afforded a similarright. Recipients of donated gametes or embryos may receive non-identifying informationabout the donor. They may also learn the identity of the donor if the donor has expresslygiven permission for his or her identity to be released to them. Donors may receive non-identifying information about recipients and offspring as of right. They may also receiveidentifying information concerning both recipients and offspring, with the consent of allparties whose identity is to be revealed. If donor offspring are under 18 at the time such arequest is made consent to disclosure is required to be given by their parents.

The 1995 Act also makes provision for access to information where gamete or embryodonations were made under previous legislation, the Infertility (Medical Procedures) Act1984. This Act was implemented in June 1988, establishing a formal system for registeringthe details of donors, recipients and births, although it also ensured the anonymity of allparties. Where an application is made for information held under the provisions of the1984 Act, available non-identifying information about the donor can be provided on therequest of the donor offspring or a descendant of the donor offspring, once the donoroffspring or a descendant has reached the age of 18, or the parents of the offspring.Available non-identifying information about the offspring may be provided to the donor.Additionally, the donor's identity can be revealed to the parents of the offspring, theoffspring him or her self, or a descendant of the offspring, provided the written consent ofthe donor is obtained and any conditions that the donor has specified are met.

Table 1: Donor information to be recorded in Victoria

1.1 donor identification code1.2 full name of donor1.3 date of birth of donor1.4 place of birth (town and country)1.5 any other name by which donor has been known1.6 full name of donor's spouse (if any)1.7 residential address and contact telephone number of the donor1.8 date on which the residential address and contact telephone number were given1.9 date on and place at which donor provided the gametes1.10 date on which the gamete(s), zygotes or embryo of the donor was received by the licensed centre, if

applicable1.11 sex of the donor1.12 marital status1.13 occupation1.14 religion (if any)1.15 ethnic background of the donor's parents and grandparents1.16 height1.17 build1.18 donor's blood group1.19 any known physical abnormality, history of mental illness or intellectual disability of the donor1.20 any screening tests undertaken in relation to item 1.19 and the results of those tests1.21 number of children (if any) and sex of each child1.22 reason why the donor made the donation1.23 whether the donor has consented to the use of his or her gametes, or a zygote or an embryo formed

from his or her gametes, in a donor treatment procedure or research1.24 total number of children born from procedures at the licensed centre using the donor's gametes or a

zygote or embryo formed from his or her gametes

Infertility Treatment Regulations 1997 [S.R. No. 164/1997] Schedule 1, Regulations 13 and 14



Before 1988, there was no requirement on service providers to maintain any records. Whileboth the Infertility Treatment Authority and service providers are expected to assist wherethey can when application is made for information, no identifying information can bereleased without the express permission of the individual to whom it relates, and anyinformation, if available at all, is likely to be sparse.

A further feature of the Victorian legislation is its provisions concerning counselling. Notonly are all individuals required to receive counselling from an àpproved counsellor'before they become donors or receive treatment, all individuals requesting identifyinginformation from the Central Register are required to receive counselling from anàpproved counsellor' about `the potential consequences of the disclosure of thatinformation' (Infertility Treatment Act 1995, S 75(2)(c); S 77(2)(c); S 78(1)), unless theAuthority decides that such counselling is not necessary.

Anderson and Blood (16th World Congress on Fertility and Sterility, San Francisco, 1998)report on the outcomes of requests for information received at two Melbourne clinics fromten donor offspring born under the previous regime guaranteeing donor anonymity. Alldonor offspring were provided with non-identifying information about the donor. Inaddition, two offspring wished to search for the donor. Neither donor wished to meet theiroffspring but agreed to correspond anonymously.

A donor perspective on the new arrangements is provided by Kevin:

I recently received a letter from Jenny Blood informing me that there are 14 children born as aresult of my donation. This is made up of 10 girls and four boys, born between 1990 and 1997,and includes one set of twins. There are 10 families. It is pleasing to be part of the effort that hasbrought joy and happiness to so many people. I have no problems with the number of childrenborn, but it is a little daunting knowing this represents 10 families. In hindsight I would bemore comfortable if my donation had been limited to five families. . . . After receiving Jenny'sletter, I got my four children (aged 4, 10, 12 and 13) together to tell them for the first time aboutmy donation in 1986 and the outcome of it. . . . The three older children did not seem to (sic)concerned, and only wanted to know if that was all I had to tell them, as they were missing outon watching `Neighbours' (Kevin, 1998).

With two qualifications, the Victorian legislation appears to have sought to balance theinterests of all parties. First, it could be argued that provisions relating to informationsharing for the period prior to 1998 do not totally accord with the spirit of the 1995 Actwhich states unequivocally that `the welfare and interests of any person born or to be bornas a result of a treatment procedure are paramount' (Infertility Treatment Act 1995,S 5(1)(a)). Second, while it explicitly perceives access to donor identity as principally a rightfor the donor's genetic descendants rather than to the recipients of the donor's gametes orembryos, the imposition of mandatory counselling may strike as somewhat paternalistic,albeit well-intended.

Discussion

A model of information exchange that takes account of the interests of all parties with apersonal interest in third party assisted conception involves the following elements: theprovision of detailed non-identifying information; the provision of identifying information;

18 Eric Blyth


a mechanism for updating information, and the extension of information exchangebetween the parties involved.

Since it was clearly the intention of the UK government, following the lead provided by theWarnock Committee, to permit donor offspring to have some information about theirorigins (DHSS, 1987), there seems little moral argument to prevent this information fromincluding the identity of the donor, accessible to those donor offspring who want it. Accessto such information should be made available when the donor offspring reach the age ofmajority, or indeed at the age of 16, to match the entitlement afforded to young people inScotland who are the subject of a Parental Order.

On principle, continuing secrecy and anonymity in donor assisted conception are hardlyconsistent with the spirit of freedom of information and promotion of human rights,whatever the precise letter of UK freedom of information and human rights legislation.Further, the current inconsistency within UK legislation that provides different rights ofaccess to information to donor-conceived offspring and to those subject to a Parental Orderis impossible to justify.

Donors would appear to have little to lose by the loss of anonymity, assuming thatprospective donors were offered adequate information and opportunity for counselling.Those unwilling to be identified would simply not become donors. While the immediateresult of such a policy could be to reduce the supply of donors, evidence from Sweden( Jonsson, 1988) and New Zealand (Purdie and others, 1992) indicates that not only canreports of such a decline be exaggerated, but it is also possible for service providers tomaintain viable DI services using only identifiable donors. Further, ICSI (intracytoplasmicsperm injectionÐa relatively new treatment where fertilisation can be achieved byinjecting a single sperm into an egg) is likely to become the treatment of choice for coupleswhere male subfertility is a factor, thus reducing the demand for donors.

Although the introduction of an identity disclosure policy would reduce the choicecurrently available to potential recipients, it may be argued that no forms of treatment areprovided without `conditions attached' and that if individuals are prepared to availthemselves of DI they should also be prepared to tell their children what they have done.Freedom of choice should not mean sanctioning morally dubious choices and a choice thatinvolves the deception of donor offspring can hardly be described otherwise. Althoughparents cannot be compelled to tell their donor-conceived children about their origins,services should be provided on the presumption of openness, and all assistance beprovided to parents to encourage them to be open. This will, of course, require theprovision of sufficient information about the donor. Such a proposal would also beconsistent with the government's Supporting Families initiative which, amongst otherthings, recognises that a contribution government can make to family life is to ensure thatàll parents have access to the advice and support they need' (Home Office, 1998, p. 5Ðmyemphasis).

Although the 1990 Act does not permit retroactive disclosure of donor identity, since therecords now exist, retroactive identity release would be possible through separate primarylegislation, a possibility anticipated by the government (DHSS, 1987). A donor offspringcentred view might well indicate that the donor offspring's interests in knowing about hisor her origins might outweigh the donor's wish for anonymity, if only on the basis that the



donor offspring was the one party who had no choice in the matter. However, theretroactive institution of identity disclosure probably poses the most severe challenge tolegislators, policy makers and those who will be required to offer counselling for donoroffspring when they request information from the HFEA Register, as mandated under the1990 Act (King's Fund Centre, 1991).

Difficulties that retroactive identity disclosure might pose for the donor are encapsulatedby Kevin's account cited earlier; (s)he may not have informed significant members of her orhis current social and family network, who may also be affected, and use of her or hisgametes is quite likely to have resulted in multiple offspring. Although states such asVictoria and the UK which have established registers have imposed upper limits on thenumber of children who may be born from the gametes of a single donor (ten in each case),large `family' networks would remain the rule rather than the exception. Both of theseissues would have to be anticipated and confronted by any donor offspring contemplatingcontact with the donor, as well as the possibility that the response of the donor and her orhis family might be less than welcoming. This suggests that any decision to allowretroactive disclosure of the donor's identity should be accompanied by some form ofmediation between donor and donor offspring.

Under Austrian and Swedish provisions, donor offspring who want more informationabout their background other than the basic data detailed in the records have little choicebut to obtain this from the donor, either directly or indirectly. Victorian legislation man-dates the collection of more detailed information about donors, although even this `list'could be usefully extended to include, for example:

. the age of any children

. medical history

. family background (occupations of parents, age, number and sex of siblings)

. educational background

. skin colour

. eye colour

. hair colour

. hobbies/interests

. self description of personality

. any message/letter/further information for any child(ren) born as a result of using thedonor's gametes/embryo(s)

. photograph of the donor

There should also be provision for donors to update and/or amend the information onrecord. There could, for example, be a specific requirement that the record-keeping bodyseek updated information from donors at specified intervals, as well as encouragingdonors at the time of donation to update their records if they become aware of informationthat might be of interest or importance to offspring. Donors should be informed of theprocedures for updating or amending information held on the register.

The final consideration concerns widening the network of those to whom information,either identifying or non-identifying, might be available. The Victorian model of extendingrights of access to genetic origins information to the descendants of donor offspringrecognises the trans-generational importance of genetic relationships and is to becommended. Similarly, in recognition of donors' contribution to the families they are

20 Eric Blyth


creating, there should be provision to enable them to receive non-identifying informationabout recipients and offspring and to receive any relevant health information that maybecome apparent as the donor offspring grows up. As with arrangements for the updatingof information concerning donors, there should be provision for regular updating of thisinformation. Taking a donor offspring centred view of these arrangements would alsoindicate that it should be left to donor offspring to decide whether the donor should receiveany information that would identify either themselves or their parents.

Conclusion

In principle, arrangements for sharing genetic origins information following third partyassisted conception should allow for the maximisation of information to be made availableto donor offspring. The basis on which information is provided to donor offspring and alsoshared with others should be determined by an unequivocal presumption that the donoroffspring's best interests should be the prime consideration, as is encapsulated in Victoria'sInfertility Treatment Act. Increasingly, the concept of donor offsprings' best interests willbe informed by the views of donor offspring themselves rather than being based onassumptions made by others. While it would be naõÈve to believe that the adoption of sucha perspective would eradicate all problems associated with sharing information in thirdparty assisted conception, it would provide a concrete endorsement of the ethos of`freedom of information' and the promotion of human rights.

References

Blyth, E and Hunt, J (1998) `Donor assisted conception and information for donor offspring in theUK: a survey of licensed centres' views on HFEA Donor Information Form (91) 4', HumanReproduction, 13, 11, 3274±3277

Blyth, E, Crawshaw, M and Speirs, J eds (1998) Truth and the Child Ten Years On: Information Exchangein Donor Assisted Conception. British Association of Social Workers

Clarke, K (1990) House of Commons Debates. 20 June, cols. 1004±1005Cook, R and others (1995) `Disclosure of donor insemination: parental attitudes', American Journal of

Orthopsychiatry, 65, 4, 549±559Department of Health and Social Security (1984) Report of the Committee of Inquiry into Human

Fertilisation and Embryology. HMSO (Warnock Report), Cmnd. 9314Department of Health and Social Security (1987) Human Fertilisation and Embryology: a Framework for

Legislation. HMSO, Cm. 259Donor Conception Support Group of Australia Inc. (1997) Let the Offspring Speak: Discussions on Donor

Conception. New South Wales: Donor Conception Support Group of Australia Inc.Gregoire, A and Mayer, R (1965) `The impregnators', Fertility and Sterility, 16, 1, 130±134Home Office (1998) Supporting Families: A Consultation Document. London: Home OfficeHuman Fertilisation and Embryology Authority (1994) Donor Information Form (HFEA Register (91)4).

London: HFEAHuman Fertilisation and Embryology Authority (1998) Code of Practice, Fourth edn. London: HFEAInternational Federation of Fertility Societies (1998) IFFS International Consensus. Montpellier: IFFSJohnson, M (1997) `Payment to gamete donors: position of the Human Fertilisation and Embryology

Authority', Human Reproduction, 12, 9, 1839±1842Jonsson, L (1988) Àrtificial Insemination in Sweden, in Gouvernement du QueÂbec', Sortir la MaterniteÂ

du Laboratoire. QueÂbec: Conseil du Statut de la femmeKevin (1998) letter in Donor Conception Support Group Newsletter, November, p. 3



King's Fund Centre (1991) Counselling for Regulated Infertility Treatments: the Report of the CounsellingCommittee. King's Fund Centre

Merricks, W (1998) Ìs it ethical?' DI Network Newsletter, 11, May, p. 4Pennings, G (1997) `The ``double track'' policy for donor anonymity', Human Reproduction, 12, 12,

2839±2844Purdie, A and others (1992) Ìdentifiable semen donorsÐattitudes of donors and recipient couples',

New Zealand Medical Journal, 105, 27±28Royal College of Obstetricians and Gynaecologists (1987) Donor Insemination Leaflet. London: RCOG.Shenfield, F (1999) Ànonymity: the case for', Progress in Reproduction, 3, 1, p. 8Shenfield, F and Steele, S (1997) `What are the effects of anonymity and secrecy on the welfare of the

child in gamete donation?', Human Reproduction, 12, 2, 392±395Sverne, T (1983) Children Conceived by Artificial Insemination: Summary of a report of the Insemination

Committee. SOU, 42, pp. 1±19Wavell, S (1997) À donor father's sins of omission', The Sunday Times News Review, 6 July, p. 6

Contributor's details

Eric Blyth, Reader in social work, University of Huddersfield, has written extensively on the socialaspects of involuntary childlessness and assisted conception and is a member of the BritishAssociation of Social Workers project group on assisted reproduction.

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Documents

Sharing genetic origins information in third party assisted conception: a case for Victorian family values?