J7ournal ofMedical Ethics 1999;25:176-182

Preimplantation genetic diagnosis and the'new' eugenicsDavid S King, Editor, GenEthics News

AbstractPreimplantation genetic diagnosis (PID) is often seenas an improvement upon prenatal testing. I arguethat PID may exacerbate the eugenic features ofprenatal testing and make possible an expandedformoffree-market eugenics. The current practice ofprenatal testing is eugenic in that its aim is to reducethe numbers ofpeople with genetic disorders. Due tosocial pressures and eugenic attitudes held by clinicalgeneticists in most countries, it results in eugenicoutcomes even though no state coercion is involved. Iargue that technological advances may soon makePID widely accessible. Because abortion is notinvolved, and multiple embryos are available, PID isradically more effective as a tool ofgenetic selection.It will also make possible selection on the basis ofnon-pathological characteristics, leading, potentially,to a full-blown free-market eugenics. For thesereasons, I argue that PID should be strictly regulated.(7ournal ofMedical Ethics 1999;25:176-182)Keywords: pre-implantation diagnosis; genetic testing;eugenics; abortion; disability

IntroductionPreimplantation genetic diagnosis (PID) is amethod of genetic testing and selection ofembryos. It involves the removal of one or morecells from embryos generated by in vitro fertilisa-tion (IVF) and analysis of the DNA from thosecells. Up to ten embryos may be produced in eachcycle of IVF, of which only two or three, whichhave the desired genetic profile, are implanted,using standard IVF procedures. It is estimatedthat around 100 children have been bornfollowing PID.' To date, the technique has beenused almost entirely to detect incurable mono-genic disorders such as Duchenne Muscular Dys-trophy and cystic fibrosis. In early examples of theuse of the technique, genetic testing was used toeliminate male embryos, to prevent transmissionof X-linked genetic disorders.2 The main group ofclients for this service have been couples known tobe at risk of having children affected by a geneticdisorder, often because they already have anaffected child.

It is generally thought that PID represents animproved form of prenatal diagnosis, primarilybecause it allows women to embark on apregnancy with the certainty (subject to testingerrors) that the child will not be affected bygenetic disorder, rather than face the trauma ofpregnancy termination. Given the analogy withprenatal testing, most bioethical arguments infavour of PID have assumed that since prenatalgenetic testing is widely accepted, the geneticselection of embryos is not, of itself, a problem. Ithas also been argued that since embryos are inevi-tably discarded in IVF, selection on geneticgrounds is unobjectionable.'

It is not the aim of this paper to mount a philo-sophical argument that genetic selection is ethi-cally unacceptable under all circumstances, orthat prenatal testing should be abolished. How-ever, I will argue that the current regime of prena-tal testing and genetic selection is eugenic in pur-pose and outcome. I believe this situation needs tobe addressed, because I believe that eugenics, atleast in all incarnations that have occurred to dateand are foreseeable this side of utopia, is sociallydamaging and harms people with disabilities.Some degree of eugenics is probably unavoidable,but we should do our utmost to restrict it. I willargue that, on the contrary, PID opens up thepossibility of a radical expansion of the currenteugenic regime, creating a consumer-driven formof eugenics in which selection for trivial medicalconditions and non-pathological characteristicswill occur. Although it has often been suggestedthat this is no more than a remote possibility, thispaper aims to show that it is indeed a serious con-cern, which requires action to regulate PID as wellas to curb other social and economic tendencieswhich point in the same direction.

Laissez faire eugenicsThe dominant tendency in debates about theimpact of human genetics research is to vieweugenics as a purely historical phenomenon, andto minimise its relevance to the current situation.In the conventional definition, the key aspect ofeugenics is coercion of people's reproductive

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choices, for social ends, which may includeimproving the quality of the population, prevent-ing suffering of future generations or reducingfinancial costs to the state. However, while it istrue that in some countries eugenics movementssucceeded in persuading the state to support theiraims, coercion was never an essential feature ofeugenic theory or practice. From its very begin-nings, many eugenicists, including the founder ofthe eugenics movement, Francis Galton, wereopposed to coercion, believing that if people wereproperly informed they would naturally make the"right" reproductive decisions. Definitions ofeugenics which exclude Galton can hardly betaken seriously.4

Patient autonomyAfter the second world war, as overt eugenics pro-grammes became politically unpopular, the prac-tice of "non-directive" genetic counselling becameinstitutionalised in most Western countries. Later,this was reinforced by the trend in medical ethicsand practice towards patient autonomy. It is gen-erally thought that medical geneticists have aban-doned their former eugenic views and thatnon-directive counselling, with the emphasis onindividuals' personal decisions, insulates humangenetics from charges of being eugenic. I wouldargue. that, on the contrary, the current systemproduces eugenic outcomes.Although non-directiveness remains the profes-

sional norm in Western countries, research ongeneticists' attitudes and practices reveals thateugenics is far from dead. Wertz and Fletcher5 6conducted a survey of the attitudes and practicesof nearly 3,000 geneticists and genetic counsellorsin 37 countries. Their results show clearly thatonly geneticists in English-speaking countries andNorthern Europe (ENE) can make any claim tonon-directiveness and abandonment of eugenicthinking. In Eastern and Southern Europe, theMiddle East, Asia and Latin America (Rest Of theWorld, ROW), geneticists not only hold eugenicideas, but see no problem in directing their clientsin accordance with those ideas. For example, inresponse to the clearly eugenic suggestion that:"An important goal of genetic counselling is toreduce the number of deleterious genes in thepopulation", 13% of UK geneticists agreed. InEastern and Southern Europe this rises to anaverage of 50%, and in China and India to nearly100%. An average of 20% ofENE geneticists feelthat, given the availability of prenatal testing, it isnot fair to society knowingly to have a child with aserious genetic disorder. In the rest of the world,majorities of geneticists supported this view, risingto nearly 100% in some countries.

Approximately 15% of ENE and majorities ofROW geneticists admit that they would providebiased prenatal counselling (emphasising negativeaspects of a condition without actually suggestingtermination) for a variety of child- and adult-onsetgenetic disorders. For conditions judged moreserious, nearly 30% of US genetics professionalswould provide negatively slanted counselling.Conversely, where the condition is viewed as lessserious, more positive counselling would be given.Wertz and Fletcher's research details what

geneticists say they think and do, in response to aquestionnaire. Figures derived from such answersalmost certainly underestimate the degree towhich counsellors contravene their professionalnorms in practice. Their conclusions are sup-ported by studies in which genetic counsellingsessions were videotaped.7 These revealed a highlevel of directiveness by genetic counsellors. Mostdisturbingly, the level was highest when clientswere from lower socio-economic groups. Mostcounselling for non-monogenic prenatal tests isperformed by obstetricians, who admit to beingmore directive than geneticists.Even were much greater efforts made towards

non-directiveness, structural features of the pre-natal testing situation militate against a genuinelyfree choice for patients. Firstly, as Green andStatham9 and Clarke'° note, the very fact that atest is offered by doctors tends to suggest towomen that its use is warranted and desirable:such is the situation in all other areas of medicine.Once it becomes routine, and is presented as such,this effect is exacerbated. Research also shows thatmany women are simply unaware that prenataltests have been performed, which indicates thatthe level of informed consent is low."

Presumption of terminationSecondly, the dynamic of undergoing testing leadsto a presumption of termination, should abnor-mality be found. Many women feel that once theyhave agreed to testing they should opt fortermination, since otherwise there was little pointin undergoing testing.9 The still common practiceamongst obstetricians of refusing to offer amnio-centesis, unless the woman agrees in advance totermination," enforces this logic.The offer of testing also tends to lead to accept-

ance in that women anticipate their own feelingsof guilt, should they decline and subsequently dis-cover that the fetus is affected by a geneticdisorder.'3 They also anticipate being blamed byothers for failing to take a test.'4 In one Britishstudy, 13% of obstetricians agreed with the state-ment that: "The state should not be expected topay for the specialised care of a child with a severe

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178 Preimplantation genetic diagnosis and the 'new'eugenics

handicap where the parents had declined the offerof prenatal testing".12 (This figure is similar toWertz and Fletcher's results concerning eugenicattitudes amongst geneticists.)

It is even more important to realise that theconventional accounts about how reproductivedecisions are made tend to ignore social context.It is assumed that prospective parents takedecisions based primarily on personal feelings andvalues. It is, of course, true that parents' decisionsover termination are affected by many factors,including attitudes towards abortion, the degreeof disability involved in particular disorders, thelevel of risk and their own personal histories.However, underlying social pressures, some ofwhich have already been referred to, stronglyaffect people's attitudes.A key social pressure is the oppression ofpeople

with disabilities.'5-17 This affects parental repro-ductive decisions in several ways. Firstly, able-bodied people receive negative images of peoplewith disabilities and general misinformation aboutwhat their lives are like. Parents receiving prenatalgenetic counselling are rarely put in touch withpeople who actually live with the genetic disorderin question. Secondly, parents are aware of thematerial aspects of disability oppression: insuffi-cient welfare provision, lack of access anddiscrimination. Women, who still bear the vastmajority of responsibility for child care, aresharply aware that the extra burden of caring for adisabled child will fall on them. Lack of adequatewelfare provision, in particular, will affect not onlythe child but may create financial problems for thefamily, as well as increased stress.These social pressures, combined with the atti-

tudes of geneticists and obstetricians and thestructural bias introduced by routinisation of test-ing, guarantee that allowing parents a "freechoice" results in a systematic bias against thebirth of genetically disabled children, a bias thatcan only be called eugenic. In noting this reality, Iam not attempting to deny parents' personalexperience, free will, or the existence of counter-vailing social forces and resources (which areoften religious).

I would also argue that the purpose of the exist-ing system is eugenic, in that its aim is to reducethe number of births of children with congenitaland genetic disorders. In most countries, as Wertzand Fletcher's surveys have shown, this point isnot contested. In some English-speaking andNorthern European countries, some official state-ments, such as those of the Nuffield Council onBioethics,18 assert that the aim of the system ispurely to allow parents more informed reproduc-tive choice. On the other hand, equally authorita-

tive statements, such as that by the British RoyalSociety of Physicians,'9 clearly indicate that thepurpose of offering screening is to reduce thenumber of births of congenitally disabled chil-dren. Although many genetic counsellors expressdiscomfort with the practice, arguments for theintroduction of genetic screening programmes areoften couched in terms of financial benefits to thestate.""22 As Green and Statham note,' it seemsunlikely that prenatal screening would have beenresourced to the degree that it has been if the pur-pose were purely to enable more informed choice,or if it were expected that most parents of a fetuswith an abnormality would choose to continue thepregnancy. Obstetricians' practice of refusingamniocentesis unless the woman agrees to atermination in advance, is evidence of a lack ofwillingness to support parental choice.

In arguing that the purpose of the existingregime is eugenic, I am not suggesting theexistence of some conspiracy, on the part of doc-tors, scientists, or the state. Kitcher"3 has dubbedthe current situation "laissez faire eugenics", inorder to capture the way that social "marketforces" result in predictable outcomes, eventhough everyone still has a nominally free choice.I do not claim that the present system is anywherenear as harmful as the earlier state-sponsoredeugenics. Clearly, for many people who wish toavoid the birth of disabled children, it isexperienced as highly beneficial. It is, none theless, eugenic, and would no doubt have pleasedGalton and his fellow eugenicists. I agree withKitcher that in a utopian future, it might be possi-ble really to achieve an uncoerced free choice foreveryone in reproductive decisions. However, thatis not the current reality. Ifwe want to achieve theutopia that Kitcher proposes, then, as he pointsout, we will be obliged to combat the social forcesthat produce laissez faire eugenics.The purpose of this discussion is to point out

that the "consumer eugenics", often invoked bybioethicists as a problem which might, (but, it isusually concluded, probably will not) occur in thefuture is, in fact, different only in scale from thecurrent regime. It is important correctly to assessthe existing situation in order to understand whatan expansion of prenatal testing and PID mightlead to.

Can PID become widespread?In my view, both social forces and developmentsin genetics point towards an expansion of the cur-rent system of laissez faire eugenics in the nearfuture. However, if this does happen, it willdepend on the practice of PID becomingwidespread, for one simple reason: few women

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will be prepared to undergo abortion for the sakeof avoiding minor or late-onset medical condi-tions, or non-pathological but undesired physicalor mental characteristics.At present, PID is limited by technical prob-

lems, such as uncertain reliability, due to potentialcontamination by extraneous DNA. It is oftensuggested by scientists that an expansion ofgenetic selection is unlikely, because genetic testswill be never be sufficiently predictive. It is alsocommonly thought that there is a sharp linebetween single-gene disorders and the more com-mon multifactorial conditions, and that we willnever be able to develop predictions of a person'spredisposition to heart disease, for example. It isalso argued that whether a person develops heartdisease also depends on environmental factorssuch as diet.There are two issues here. The first is the

adequacy of the testing technology, which willhave to assess variations in many different genes.In fact, there are already gene chips that can lookat major mutations in a hundred different genes atonce.24 25 Genetic testing technology is continuallyimproving and becoming cheaper, and it would bea mistake to expect this not to continue.The second point is that it may indeed be diffi-

cult accurately to predict not only health statusbut also behavioural and personality characteris-tics from genetic tests. I believe that the jury is stillout on this issue. It seems quite likely, however,that some genes with relatively major effects onpredisposition to important diseases will befound. It is almost certain that prediction with anaccuracy of two decimal places will never be pos-sible. But for people trying to select embryos, twodecimal places are unnecessary. Neither will theybe concerned about the uncertainties due to envi-ronmental factors. Since in PID they are obligedto select two or three embryos from the pool often, they will accept a certain amount ofinaccuracy, and simply try to select the "best"embryos that they can find, according to theinformation presented to them on the embryo'sgenetic predispositions.The other key technical development which will

be needed to make PID widely available will bethe ability to obtain multiple eggs in a more user-friendly fashion than in current IVF protocols.Robertson3 argues, correctly, that most womenwill be unwilling to undergo IVF, which is at leastuncomfortable and may be dangerous, for thesake of access to PID. A major problem in IVF isthe variable number and quality of eggs which areproduced by hormonal stimulation of women'sovaries, and the effect that this has on women. It ispossible that this problem may be solved. I believe

that the most likely way in which this limitationwill be overcome is through the in vitro matura-tion of eggs. There is considerable research in thisarea, particularly in the agricultural field, which islikely soon to bear fruit. It seems likely that in fiveto ten years it will be possible to remove a smallslice of ovary, containing hundreds of eggs, whichcan be frozen and matured at will. It has beensuggested that it may become common practicefor women to undergo such a minor operation intheir late teens, and for the eggs to be stored untilthe woman wishes to have children.26At that point, the only barrier to widespread use

ofPID will be the low pregnancy rate of IVF. Thismay not be a major problem for a number ofreasons, since the IVF pregnancy rate is not muchlower than the pregnancy rate achieved in naturalfertilisation; the difference is that it is much easierto make repeated attempts by natural methods.Once the egg supply problem is dealt with,repeated implantations of embryos will not beparticularly taxing to women.

If oocyte maturation succeeds, therefore, IVFmay become a much more accessible choice fornormally-fertile couples. At that point, PID maybecome potentially accessible to any woman. It isquite possible that, given the possibilities that itholds for selection, PID may become the technol-ogy of choice for the conscientious couple whowant to make sure they give their baby the beststart in life. It will be relatively easy to market PIDas a way to ensure children's genetic health, and asa guarantee of a problem-free pregnancy.

The eugenic implications ofPIDIf PID becomes more user friendly, and geneticprediction reasonably robust, what are the impli-cations? I believe there are a number of features ofPID which will encourage an expansion of laissezfaire eugenics.The fact that PID operates on embryos rather

than on an established pregnancy differentiates itdecisively from prenatal testing, in ethical, legal,social and psychological terms. As noted, PID hasno inbuilt brake on its application for purposes ofgenetic selection, because it does not involveabortion, with all the physical and emotionaltrauma which that can entail. Embryos which arestill outside the mother's body have a far loweremotional weight than a fetus which a couplealready think of as their baby.Because abortion is not involved, ifPID were to

become widely available it would deepen thesocial pressure on parents to avoid geneticdisorder and undergo testing. While there is stillwidespread sympathy for a woman who refusesprenatal testing or abortion, because she cannot

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180 Preimplantation genetic diagnosis and the 'new'eugenics

kill her child-to-be, it is unlikely there would besuch sympathy for parents who rejected theopportunity of PID, simply on the grounds ofwishing to leave things to chance.A further consequence will be a strengthening

of the culture of prevention. The option ofcontinuing with an affected pregnancy will beabolished, because most people will think itwicked to implant an embryo which will developinto a child with a genetic disorder. Le Bris27 hasalready suggested that once a gene causing a dis-order has been detected in an embryo, couplesshould not be given the option to implant it.The very fact that the embryo is outside the

woman's body, and before the onset of pregnancy,means that the argument for "a woman's right tochoose" is weakened, and the decisions over theembryo's fate become much more open tointervention from male partners, doctors andsociety at large. In particular, the site of PID, theIVF clinic, means that doctors will have a muchgreater say than in prenatal testing.28 In the IVFclinic, decisions over which embryos to implantare controlled by medical expertise, in contrast tothe genetic counselling situation, where the coupledecide. Since it will be so easy to prevent disabil-ity, doctors will tend to feel a greater responsibil-ity to the child than with prenatal testing. Preim-plantation diagnosis thus represents a newintensification of the medical surveillance ofhuman reproduction, which would institute a farmore preventive regime than currently operatesfor prenatal testing.The second important aspect of PID is the

multiplicity of embryos available for selection.Since most couples aim for a small number ofchildren, a likely consequence will be the develop-ment of a culture of choosiness: since someembryos must be chosen above others it willappear common sense, and "in the best interestsof the child" to pick embryos with the "best"genetic profile. This would, in effect, be a systemof positive eugenics, in contrast to the negativeeugenics we have now.Another part of the culture of choosiness will be

a tendency to eliminate those embryos which mayresult in children with relatively minor, curable orlate onset conditions. Strong,2" for example, citingreproductive freedom, argues that there is noproblem with using PID for such conditions.There have also been discussions30 of the possi-bility that parents will opt for elimination ofembryos that are heterozygote carriers of disordergenes, on the grounds of sparing the individualdifficult reproductive decisions in the future, or ofeliminating such genes from the gene pool. Suchcarriers will generally be entirely healthy. Eventu-

ally, it seems likely that it will be possible to selectfor desired biological characteristics and apti-tudes. Given existing trends in our society, such asthe increasing prevalence of cosmetic surgery, it isnaive to expect that either doctors or the state arelikely to prevent the use of PID for suchcharacteristics, unless a determined effort is madeto regulate PID. Part of the problem in attemptingto do this is that there is little agreement about thedomain of medicine and a constant process ofredefining biological and behavioural variation aspathological. It is, for example, common practicein the USA to prescribe human growth hormoneto short children who have no deficiency of thehormone.

In summary, in PID, the combination of thelack of need for abortion and the availability ofmultiple embryos creates a radically differentsituation from that of prenatal testing. Allowingselection between a number of embryos, beforepregnancy has commenced, creates an entirelydifferent attitude towards reproduction from pre-natal testing and abortion, which serves merely todeal with serious mishaps. In PID, parents adopt afar more pro-active, directing role, choosing theirchildren in a way which is not so far removed fromtheir experience as consumers, choosing amongstdifferent products.

What's wrong with consumer eugenics?There are a number of reasons why an unre-stricted free-market eugenics would be highlyundesirable. Firstly, selecting the "best" amongstmultiple embryos sets up a new relationshipbetween parents and offspring. As illustrated in arecent play, The Gift,33 such children are likely tofeel that the essence of themselves, in animportant sense no longer belongs solely to them,since it has been overseen by their parents, usingthe all-seeing eye of genetic technology. They areno longer a gift from God, or the random forces ofnature, but selected products, expressing, in part,their parents' aspirations, desires and whims. AsKahn has noted in reference to cloning34:

"Part of the individuality and dignity of a personprobably lies in the uniqueness and the unpredict-ability surrounding his or her development. As aresult, the uncertainty of the great lottery ofheredity constitutes the principal protection forhuman beings against biological predeterminationimposed by third parties, including parents. Oneof the blessings of the relationship betweenparents and their children is their inevitabledifference, which results in parents loving theirchildren for what they are, rather than endeavour-ing to make them what they want."

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At a social level there are further undesirable con-sequences. Opening the human gene pool to thewinds of social market forces on a large scalemight have a number of effects. Clearly, there islikely to be a tendency for parents to selectoffspring which conform best to social norms,with regard to health and physical ability, appear-ance and aptitudes. Disabled people have oftenexpressed fears that an expanded free-marketeugenics would correspondingly lessen society'stolerance for those with congenital and geneticdisorders. While it may be true in theory that thereis no moral inconsistency between respect andsupport for disabled people and attempting toprevent their birth, in the real world, and in theminds of prospective parents, the two things areintimately related, as discussed above. It isdifficult to believe that in a society which hadovercome its fears of disability and truly consid-ered disabled people as equal members of thecommunity, there would be such an interest inprenatal screening.As the examples of treatment of short children

with growth hormone, and the use in some coun-tries of prenatal screening for selection againstfemales illustrate, some of the social market forceswhich operate are inherently oppressive. It is alsopossible to imagine selection on grounds of IQ,skin colour, physical build and facial features, etc.It does not seem desirable to allow such forces tooperate at the level of selection of who is permit-ted to be born. Rather, we should combat thesocial forces which lead us to disvalue some indi-viduals and idealise others.As Silver has recently expounded,35 a logical

consequence of a system of free-market eugenicsin societies where large disparities of wealth andsocial class continue to exist is a gradual polarisa-tion of society into a genetically privileged rulingelite and an underclass. It may be argued that thisis not a problem related to PID as such, but sim-ply requires us to make PID universally available.While this may be true in theory, it seems unlikelyto be realised in practice, particularly in countriessuch as the USA. Certainly, a guarantee of univer-sal availability would seem to be a precondition ofallowing widespread access to PID.

It is also important to realise that the linebetween state eugenics and free-market eugenicsis not sharp. It would be perfectly possible for statebureaucracies to intervene in the free market, ongrounds of public health or national competitive-ness. Such interventions need not be obvious orrequire coercion.

Finally, in the long term, there are goodbiological reasons for not allowing market forcesto shape the human gene pool. Many people, for

example, would prefer their children not to havetendencies towards being fat; being overweight is arisk factor for many diseases including heartdisease and diabetes. Should we allow free accessto genetic testing for obesity? We do not have suf-ficient understanding of human biology to allowus to judge the evolutionary value of genes, whichin existing societies produce disease.

ConclusionAt present, the major barriers to the routine use ofPID are technical. Although it is by no means cer-tain that such barriers will be surmounted,current scientific trends suggest that we shouldnot be complacent. If it becomes more userfriendly, and the present climate of reproductiveliberalism continues, PID might be widely pro-moted by private clinics. Widespread access toPID would not merely be a necessary conditionfor a radical expansion of laissez faire eugenics;different aspects of PID would actively encouragesuch an outcome.

Clearly, there is a need for specific regulation ofPID. In addition to the usual requirements ofcompetence and safety, Le Bris"7 argues that labo-ratories which conduct PID should be in the pub-lic sector, ideally in teaching hospitals, and thatthere should be adequate provision of geneticcounselling. The key issue, however, and the mostdifficult question is: for which conditions should itbe permissible to conduct PID. There is currentlylittle discussion of this issue. As noted, there is atendency to assume that, since it is so easy to dis-card embryos when others are available, there isno ethical problem in selecting against relativelytrivial medical conditions. However, it is vital thatwe do not allow technical developments to decidefundamental ethical and social questions.

It is important that we attempt to find someconsensus about where to draw the lines aroundthe application of PID. Such lines are inevitablysomewhat arbitrary, and there should always besome flexibility in individual cases. However, if nolines are no drawn, it is difficult to see what willprevent a progression towards a full-blownconsumer eugenics. It would be better to dig ourheels in now than to suffer the consequences at alater date.

David S King, PhD, is the Editor of GenEthicsNews.

References1 Winston R. Preimplantation diagnosis: the clinical issues. Pres-

entation: Ethics ofPreimplantation Diagnosis Conference. London:The Centre for Bioethics and Public Policy, 1998.

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182 Preimplantation genetic diagnosis and the 'new' eugenics

2 Handyside AH, Kontogianni EH, Hardy K, Winston RM.Pregnancies from biopsied human preimplantation embryosscreened by Y-specific DNA amplification. Nature 1990;344:768-70.

3 Robertson JA. Ethical and legal issues in preimplantationscreening. Fertility and Sterility 1992;57: 1-1 1.

4 Paul D. Cost benefit reasoning and eugenics. Presentation:Eugenzic Thought and Practice: a Reappraisal Towards the End ofthe Twen?tieth Centuiryp Con?ferenice. Tel Aviv and Jerusalem: VanLeer Jerusalem Institute, 1997.

5 Wertz DC. Eugenics is alive and well.Presentation: EugeniLcThought and Practice: a Reappraisal Towards the End of the Twen-tieth Century Conference. Tel Aviv and Jerusalem: Van Leer Jeru-salem Institute, 1997.

6 Wertz DC. Society and the not-so-new genetics: what are weafraid of? Some predictions from a social scientist. J7ournal ofConteniporary Health Law anid Poljicy 1997;13;299-346.

7 Michie S, Bron F, Bobrow M, Marteau TM. Nondirectivenessin genetic counselling: an empirical study. Aniierican J7ournal ofHunman Genzetics 1997;60:40-7.

8 Marteau T, Drake H, Bobrow M. Counselling following diag-nosis of a foetal abnormality: the differing approaches of obste-tricians, clinical geneticists and genetic nurses. J7ournal ofMedi-cal Genetics 1994;31;864-7.

9 Green J, Statham H. Psychosocial aspects of prenatal screeningand diagnosis. In: Marteau T, Richards M, eds. The troubledhelix: social and psychological iniplicationis of the niew huiiiian genet-ics. Cambridge: Cambridge University Press, 1996:140-63.

10 Clarke A. Is non-directive genetic counselling possible? Lancet1991;338:998- 1001.

11 Marteau TM, Johnston M, Plenicar M, Shaw RW, Slack J.Development of a self-administered questionnarie to measurewomen's knowledge of pre-natal screening and diagnostic tests.J_ournal of Psychosomatic Research 1988;32:403-8.

12 Green JM. Obstetricians' views on prenatal diagnosis andtermination of pregnancy: 1980 compared with 1993. BritishJournal of Obstetrics anid Gynaecology 1995;102:228-32.

13 Farrant W. Who's for amniocentesis? In: Homans H, ed. Thesexuial politics of reproduction. London: Gower, 1985: 96-177.

14 Marteau T, Drake H. Attributions for disability: the influenceof genetic screening. Social Scienzce and Medicine 1995;40: 1127-32.

15 Shakespeare T. Back to the future? new genetics and disabledpeople. Critical Social Policy 1995;44:22-35.

16 Shakespeare T. Choices and rights: eugenics, genetics and dis-ability. Disability and Society 1998; 13: forthcoming.

17 Hubbard R. Abortion and disability: who should and whoshould not inhabit the world? In: Davis L, ed. The disability,studies reader. New York: Routledge, 1997.

18 Nuffield Council on Bioethics. Genetic screeninlg: ethical issues.London: Nuffield Council on Bioethics, 1993.

19 Royal College of Physicians. Pre-natal diagniosis anid anid genieticscreening: comniunit' and service iniiplication1s. London: RoyalCollege of Physicians, 1989.

20 Wald NJ, Kennard A, Densem JW, Cuckle HS, Chard T, ButlerL. Antenatal maternal serum screening for Down's syndrome:results of a demonstration project. British Medical Jo7urnal1992;305:391-4.

21 Murray J, Cuckle C, Taylor G, Hewison J. Screening for Frag-ile X syndrome. Health Technology Assessnienit 1997; 1,4:1-69.

22 US National Institutes of Health. Consensus developmentstatement. Genetic testing for cystic fibrosis. Bethesda: MarylandNational Institutes of Health, 1997.

23 Kitcher P. The lives to conie: the genetic revolution anid hliiiiatn pos-sibilities. London: Allen Lane, The Penguin Press, 1996.

24 Southern M. DNA chips: analysing sequence by hybridisationto oligonucleotides on a large scale. Trends in Genetics 1996;12:110-14.

25 Anonymous [editorial]. To affinity ... and beyond. NaturcGenetics 1996;14:367-70.

26 Newton H, Aubard Y, Rutherford A, Sharma V, Gosden R.Low temperature storage and grafting of human ovarian tissue.Hunian Reproduction 1996;1 1: 1487-9 1.

27 Le Bris S. Preimplantation diagnosis: points to consider.Bioniedical Ethics 1998;3:52-60.

28 Bonnicksen A. Genetic diagnosis of human embryos. HastingsCenter Report 1992; 22: (suppl): S5-S11.

29 Strong C. Ethics in reproduictive and perinatal niedicine. NeevHaven CT: Yale University Press, 1997.

30 Raeburn JA. Commentary: preimplantation diagnosis raises aphilosophical dilemma. British MedicalJournal 1995;311:540.

31 Baldwin N. The Gift. 1995. Performed in many theatres inBritain by Y Touring Company.

32 Kahn A. Cloning, dignity and ethical revisionism. Nature 1997;388:320.

33 Silver L. Reniaking Eden: cloning and beyond in1 a brave ne, wvorld.Avon: Weidenfeld and Nicolson, 1998.

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