Sex selection: choice and responsibility in human reproduction ...
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<strong>Sex</strong> Selection:Choice <strong>and</strong> Responsibility<strong>in</strong> Human ReproductionChair’s Foreword 2Executive Summary 3Part One: Introduction 5What is the HFEA?What is ‘sex <strong>selection</strong>’?What is the purpose of this consultation?Part Two: Reasons for <strong>Sex</strong> Selection 7<strong>Sex</strong> <strong>selection</strong> for medical reasons<strong>Sex</strong> <strong>selection</strong> for non-medical reasonsPart Three: Methods of <strong>Sex</strong> Selection 9Preconception sex <strong>selection</strong>Preimplantation sex <strong>selection</strong>Post-implantation sex <strong>selection</strong>Part Four: Legal <strong>and</strong> Regulatory issues 18Part Five: Ethical/Social issues 21What people have saidMedical reasonsNon-medical reasonsPart Six: Appendices 30Appendix 1: GlossaryAppendix 2: Consultation CriteriaAppendix 3: Further Information/useful l<strong>in</strong>ksPart Seven: Questionnaire 34HFEA SEX SELECTION CONSULTATION: QUESTIONNAIRERegulation of Sperm Sort<strong>in</strong>g (questions 1 <strong>and</strong> 2)Uses of sperm sort<strong>in</strong>g <strong>and</strong> PGD (questions 3 to 6)Criteria for non-medical uses of sex <strong>selection</strong> (questions 7 <strong>and</strong> 8)
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionChair’s ForewordPeople have tried to <strong>in</strong>fluence whether their child will be a boy or a girl for hundredsof years. But science has only recently provided ways for people to practice ‘sex <strong>selection</strong>’with any likelihood of success.2Today, it is possible to detect accurately the sex of an embryo created dur<strong>in</strong>g IVF. Thisallows people to choose whether, if their treatment is successful, it will result <strong>in</strong> a girl ora boy. In some countries, such as the USA, some cl<strong>in</strong>ics offer techniques that ‘sort sperm’,which means a woman can choose to be <strong>in</strong>sem<strong>in</strong>ated with sperm that will maximise herchances of conceiv<strong>in</strong>g a girl or, if she prefers, a boy.The development of these techniques presents challenges <strong>and</strong> poses new questions. Is itright that people should be able to choose the sex of their child? If so, for what reasons?And if it is acceptable, should these new techniques be regulated?Earlier this year the Secretary of State asked the HFEA to consult people about this<strong>and</strong> we were pleased to explore what people <strong>in</strong> the UK th<strong>in</strong>k. We feel that it is extremelyimportant that people make their voices heard on this important area of public policy.This consultation paper expla<strong>in</strong>s the different ways that people can try to select the sexof their baby, <strong>and</strong> the reasons why they may wish to do so. We hope that you will read thedocument <strong>and</strong> take this opportunity to tell us your views. In Spr<strong>in</strong>g 2003, when we haveconsidered responses, we will present policy recommendations to Government.Please use the questionnaire at the end of this document to tell us your views by January22, 2003.Suzi LeatherHFEA ChairHuman Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionExecutive SummaryThe HFEA’s last public consultation on sex <strong>selection</strong> was held <strong>in</strong> 1993. Follow<strong>in</strong>g thisconsultation, the policy of only permitt<strong>in</strong>g sex <strong>selection</strong> us<strong>in</strong>g licensed treatments for theavoidance of serious sex-l<strong>in</strong>ked genetic conditions was confirmed. S<strong>in</strong>ce then, however,the range <strong>and</strong> effectiveness of techniques for sex <strong>selection</strong> have <strong>in</strong>creased.People may wish to select the sex of their offspr<strong>in</strong>g for many reasons, for example becausethey carry a genetic disease that they do not wish to pass on to their children, becausethey already have children exclusively of one sex <strong>and</strong> want to have children of the other,or for a variety of social, cultural <strong>and</strong> economic reasons.3<strong>Sex</strong> <strong>selection</strong> can be performed at three stages: before conception, where sperm are sortedto produce male <strong>and</strong> female embryos; before the embryo is transferred to a woman,where embryos created by IVF are tested to select those of a particular sex for transfer;<strong>and</strong> after a pregnancy is established, where term<strong>in</strong>ation of pregnancy is used to halt thedevelopment of a fetus that is of the un<strong>in</strong>tended sex. Of these, preconception spermsort<strong>in</strong>g, although not currently as reliable as preimplantation test<strong>in</strong>g, promises tocomb<strong>in</strong>e the advantages of a comparatively un-<strong>in</strong>vasive technique with the avoidance ofunnecessary embryo creation, although health risks associated with it are difficult toassess fully on the current evidence.Whilst preimplantation test<strong>in</strong>g of embryos is closely regulated <strong>in</strong> the United K<strong>in</strong>gdom,sperm sort<strong>in</strong>g, where it does not <strong>in</strong>volve us<strong>in</strong>g the sperm of a donor or creat<strong>in</strong>g embryosoutside the body, is not. Consequently whilst strict controls exist to ensure the quality ofpreimplantation test<strong>in</strong>g <strong>and</strong> to restrict its use to those circumstances that are currentlyregarded as acceptable, preconception techniques are not subject to any control. If theywere to be regulated, this would therefore require an extension of present legislation.There are strong arguments <strong>in</strong> favour of extend<strong>in</strong>g the availability of sex <strong>selection</strong> basedon the assumed moral rights of <strong>in</strong>dividuals to exercise freedom of <strong>choice</strong> <strong>in</strong> areas whichmost closely affect them so long as no one, <strong>in</strong>clud<strong>in</strong>g the result<strong>in</strong>g child, is harmed.However the claim that no harm will be done is disputed by many who po<strong>in</strong>t toviolations of div<strong>in</strong>e law, natural justice, <strong>and</strong> the <strong>in</strong>herent dignity of <strong>human</strong> be<strong>in</strong>gs asreasons to oppose greater permissiveness. Objections aris<strong>in</strong>g from both pr<strong>in</strong>cipled <strong>and</strong>utilitarian considerations may be advanced, <strong>in</strong>clud<strong>in</strong>g claims that permitt<strong>in</strong>g sex <strong>selection</strong>for non-medical reasons <strong>in</strong>volves or leads to unacceptable discrim<strong>in</strong>ation on grounds ofsex <strong>and</strong> disability, potential psychological damage to the result<strong>in</strong>g children, <strong>and</strong> an<strong>in</strong>ability to prevent a slide down the slippery slope towards permitt<strong>in</strong>g ‘designer’ babies.The arguments put forward aga<strong>in</strong>st the permissive view may be tested aga<strong>in</strong>st what issupposedly the least objectionable non-medical reason for sex <strong>selection</strong>, ‘familybalanc<strong>in</strong>g’, to assess whether any form of sex <strong>selection</strong>, by any means, that is not carriedout for serious medical reasons is morally acceptable.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionThe <strong>in</strong>formation conta<strong>in</strong>ed <strong>in</strong> this document is <strong>in</strong>tended to help respondents to answerthe follow<strong>in</strong>g questions:4●●●●●●●●Should sperm sort<strong>in</strong>g be regulated <strong>in</strong> the United K<strong>in</strong>gdom by the HFEA?Should the use of sperm sort<strong>in</strong>g be permitted only when its reliability <strong>and</strong>absence of risk to health have been satisfactorily established?Should the use of sperm sort<strong>in</strong>g be permitted <strong>in</strong> sex <strong>selection</strong> for medical reasonsif the people seek<strong>in</strong>g treatment request it?Should the use of sperm sort<strong>in</strong>g be permitted <strong>in</strong> sex <strong>selection</strong> for non-medicalreasons if the people seek<strong>in</strong>g treatment request it?Should the use of preimplantation genetic diagnosis (PGD) be permitted forselect<strong>in</strong>g the sex of offspr<strong>in</strong>g for non-medical reasons?Would it be preferable to comb<strong>in</strong>e sperm sort<strong>in</strong>g with preimplantation geneticdiagnosis (PGD) when select<strong>in</strong>g the sex of offspr<strong>in</strong>g for medical reasons (ratherthan us<strong>in</strong>g either technique s<strong>in</strong>gly)?Should sex <strong>selection</strong> (by either sperm sort<strong>in</strong>g or PGD) be permitted for nonmedicalreasons when a family has at least two children of one sex <strong>and</strong> none ofthe other sex?Should sex <strong>selection</strong> (by either sperm sort<strong>in</strong>g or PGD) be permitted for nonmedicalreasons other than family balanc<strong>in</strong>g?Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPart One: IntroductionWhat is the HFEA?1. The Human Fertilisation <strong>and</strong> Embryology Authority (HFEA) was created by an Actof Parliament <strong>in</strong> 1990 to regulate the cl<strong>in</strong>ical practice of assisted conception <strong>and</strong> theuse of <strong>human</strong> embryos. We produce a Code of Practice for centres licensed toprovide assisted conception <strong>and</strong> also provide guidance for couples <strong>and</strong> womenconsider<strong>in</strong>g any form of fertility treatment. We are committed to contribut<strong>in</strong>g toprofessional <strong>and</strong> public debate on issues relat<strong>in</strong>g to assisted conception <strong>and</strong> <strong>human</strong>embryo research <strong>in</strong> the UK.5What is ‘sex <strong>selection</strong>’?2. One of these issues is sex <strong>selection</strong>, which for the purpose of this consultation meansany practice, technique or <strong>in</strong>tervention <strong>in</strong>tended to <strong>in</strong>crease the likelihood of theconception, gestation <strong>and</strong> birth of a child of one sex rather than the other.3. People may wish to select the sex of their children for many reasons: for example,because they are at risk of pass<strong>in</strong>g on a serious genetic condition to children ofone sex (e.g. haemophilia, which affects only males) <strong>and</strong> wish to select childrenwho will be unaffected; because they already have children predom<strong>in</strong>antly of onesex <strong>and</strong> would like a child of the other sex to complement their exist<strong>in</strong>g family(‘family balanc<strong>in</strong>g’); or because of cultural or f<strong>in</strong>ancial reasons for preferr<strong>in</strong>gone sex above the other (e.g. payment of dowries, <strong>in</strong>heritance of l<strong>and</strong>, name or title).4. <strong>Sex</strong> <strong>selection</strong> may be achieved <strong>in</strong> many ways, some of which are regulated by theHFEA <strong>in</strong> accordance with the provisions of the Human Fertilisation <strong>and</strong>Embryology Act 1990. The practices <strong>and</strong> techniques that are currently or potentiallyavailable to those who wish to select the sex of their offspr<strong>in</strong>g vary greatly <strong>in</strong> thelikelihood of success <strong>and</strong> the <strong>in</strong>vasiveness of the technique, as well as <strong>in</strong> their impacton the prospective parents <strong>and</strong> their moral acceptability.What is the purpose of this consultation?5. Throughout 2002 we are conduct<strong>in</strong>g a comprehensive review of sex <strong>selection</strong>.In January we commissioned two <strong>in</strong>dependent reports, one on the range, safety<strong>and</strong> reliability of the techniques currently available for sex <strong>selection</strong>, <strong>and</strong> the otheron the social <strong>and</strong> ethical considerations that relate to them. In June qualitativemarket research <strong>in</strong>volv<strong>in</strong>g a number of discussion groups was conducted <strong>in</strong>to publicattitudes towards sex <strong>selection</strong> <strong>in</strong> the UK <strong>and</strong> to support this, we have commissionedfurther quantitative research on this subject.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction6. The purpose of the review is:●to assess comprehensively the current state <strong>and</strong> likely future development oftechniques for sex <strong>selection</strong> from social, ethical, scientific, technical, legal <strong>and</strong>regulatory perspectives, <strong>and</strong> to review arrangements for their regulation.67. Follow<strong>in</strong>g the review we will suggest options for regulation which will be presentedto UK Health M<strong>in</strong>isters <strong>in</strong> 2003. A full report on the review, to <strong>in</strong>clude the resultsof this public consultation, will be published dur<strong>in</strong>g 2003. 18. Our last public consultation on sex <strong>selection</strong> was <strong>in</strong> 1993, follow<strong>in</strong>g which itwas decided that licensable sex <strong>selection</strong> techniques should not be permitted fornon-medical reasons <strong>in</strong> the UK. S<strong>in</strong>ce then the range <strong>and</strong> effectiveness of techniquesfor sex <strong>selection</strong> have <strong>in</strong>creased significantly. As the use of assisted <strong>reproduction</strong>techniques has become more widespread <strong>and</strong> a greater amount of <strong>in</strong>formation isnow available, public attitudes may also have changed dur<strong>in</strong>g this period.9. The purpose of this consultation document is:●to seek the views of the public concern<strong>in</strong>g under what circumstances sex <strong>selection</strong>should be available to those seek<strong>in</strong>g treatment <strong>and</strong> whether any new legalprovisions should be put <strong>in</strong> place to regulate it.10. At the end of this document you will f<strong>in</strong>d a questionnaire. We would like you to usethis questionnaire to have your say <strong>in</strong> the debate over sex <strong>selection</strong>. We wouldespecially welcome more substantial contributions from anyone who has a strong<strong>in</strong>terest <strong>in</strong> this subject. The HFEA <strong>in</strong>tends to listen carefully to all the arguments putforward.1This will be available on the HFEA website: www.hfea.gov.ukHuman Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPart Two: Reasons For <strong>Sex</strong> Selection11. Broadly, the reasons people have for want<strong>in</strong>g to select the sex of offspr<strong>in</strong>g fall <strong>in</strong>totwo categories: medical <strong>and</strong> non-medical.<strong>Sex</strong> <strong>selection</strong> for medical reasons12. There are approximately two hundred known sex-l<strong>in</strong>ked diseases, most of whichonly affect males. These diseases vary <strong>in</strong> severity from colour bl<strong>in</strong>dness tohaemophilia <strong>and</strong> Duchenne’s muscular dystrophy. In the absence of cures for thesediseases, medical <strong>selection</strong> of embryos provides couples <strong>and</strong> women with the optionto avoid hav<strong>in</strong>g children who may suffer serious – <strong>and</strong> possibly term<strong>in</strong>al – illness <strong>in</strong>early <strong>and</strong> later life.713. <strong>Sex</strong> <strong>selection</strong> for medical reasons is already permitted by law <strong>in</strong> the UK, either byelective term<strong>in</strong>ation of pregnancies at risk or by test<strong>in</strong>g embryos conceived through<strong>in</strong> vitro fertilisation (IVF) before they are transferred to the woman. Where this isallowed, those carry<strong>in</strong>g out the procedures are required to be licensed <strong>and</strong> to followstrict guidel<strong>in</strong>es.<strong>Sex</strong> <strong>selection</strong> for non-medical reasonsPersonal reasons14. Sometimes prospective parents have a strong preference for hav<strong>in</strong>g a child of one sexrather than the other. Often this is where they already have one or more children ofone sex <strong>and</strong> have a strong wish to have a further child of the other sex (this issometimes called ‘family balanc<strong>in</strong>g’).Social/cultural/economic reasons15. Sometimes prospective parents want a son <strong>in</strong> order to carry on a family name, oftenwhere this is l<strong>in</strong>ked to the possibility of <strong>in</strong>heritance. In other cases parents just needsons to work the l<strong>and</strong> or br<strong>in</strong>g <strong>in</strong> wages, or wish to avoid daughters <strong>in</strong> order to avoidthe payment of dowries.16. Current legislation <strong>in</strong> the UK prohibits licensed centres (although not unlicensedcl<strong>in</strong>ics) from offer<strong>in</strong>g sex <strong>selection</strong> except for medical reasons. Some cl<strong>in</strong>ics <strong>in</strong> theUSA <strong>and</strong> some other countries do offer sex <strong>selection</strong> for non-medical reasons us<strong>in</strong>ga variety of techniques.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionSummaryApproach of somecountries to sex <strong>selection</strong>for non-medical reasonsNot prohibitedUK (unregulatedtechniques)USAIndiaNot permittedUK (regulated techniques)Much of Europe(signatories to Oviedoconvention) 28Jordan2Article 14 of the Council of Europe Convention for the Protection of Human Rights <strong>and</strong> Dignity of theHuman Be<strong>in</strong>g with Regard to the Application of Biology <strong>and</strong> Medic<strong>in</strong>e: Convention on Human Rights <strong>and</strong>Biomedic<strong>in</strong>e (Oviedo Convention), to which the UK is not a signatory, states: “The use of techniques ofmedically assisted procreation shall not be allowed for the purpose of choos<strong>in</strong>g a future child’s sex, exceptwhere serious hereditary sex-related disease is to be avoided.”Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPart Three: Methods Of <strong>Sex</strong> Selection17. The sex of offspr<strong>in</strong>g is determ<strong>in</strong>ed by the chromosomes (carry<strong>in</strong>g genes or DNA)that are present <strong>in</strong> the nucleus of every cell <strong>in</strong> the body. Human cells conta<strong>in</strong> 46chromosomes: 22 pairs (one of each pair com<strong>in</strong>g from each parent) plus two ‘sexchromosomes’, denoted X <strong>and</strong> Y.18. An egg produced by a woman dur<strong>in</strong>g her monthly cycle always conta<strong>in</strong>s an Xchromosome. Sperm produced by a man conta<strong>in</strong>s either an X or a Y chromosome.When a sperm fertilises an egg to produce an embryo, the result<strong>in</strong>g embryo will beeither XX (female) or XY (male). 3919. Usually fertilisation occurs naturally <strong>in</strong> the woman’s body after sexual <strong>in</strong>tercourse.However, particularly when people are hav<strong>in</strong>g trouble conceiv<strong>in</strong>g (<strong>in</strong>fertility),embryos may also be created <strong>in</strong> a laboratory <strong>and</strong> then transferred to the womanwhen they are a few days old. At this stage the embryo is made up of only a smallnumber of cells <strong>and</strong> is still <strong>in</strong>visible to the naked eye. This is <strong>in</strong> vitro fertilisation(IVF).20. Broadly sex <strong>selection</strong> may be performed at three different stages:or●●●before fertilisation takes place <strong>and</strong> an embryo is conceived (pre-conception)after fertilisation outside the body but before the embryo is transferred to thewoman <strong>and</strong> a pregnancy is established (preimplantation)after a pregnancy is established (post-implantation)21. It will be important later on, when it comes to evaluat<strong>in</strong>g the uses of sex <strong>selection</strong>,to be clear about the exact nature of the <strong>choice</strong> that is be<strong>in</strong>g made with eachmethod. When one th<strong>in</strong>ks of sex <strong>selection</strong> one has to be careful not to committhe fallacy of th<strong>in</strong>k<strong>in</strong>g that by us<strong>in</strong>g these techniques one is choos<strong>in</strong>g the sex of ‘anembryo’ or ‘a child’. The techniques do not affect the sex of embryos or children whoalready exist: the <strong>choice</strong> is either about which embryos will be created <strong>in</strong> the firstplace (sperm sort<strong>in</strong>g) or about which embryos, from among those that already existwill be transferred (PGD).3There are certa<strong>in</strong> rare chromosomal abnormalities, which vary <strong>in</strong> severity, when people have more or fewerthan two sex chromosomes. These can be detected through preimplantation genetic diagnosis.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPreconception sex <strong>selection</strong>1022. Aside from alternative methods of dubious efficacy 4 which do not <strong>in</strong>volve the<strong>in</strong>tervention of a third party <strong>and</strong> which are therefore properly part of a couple’sprivate life, cl<strong>in</strong>ical techniques have recently been developed that <strong>in</strong>volve separat<strong>in</strong>gsperm that carry the X chromosome from those that carry the Y chromosome. Theenriched sperm samples are then used for artificial <strong>in</strong>sem<strong>in</strong>ation or IVF to <strong>in</strong>creasethe likelihood of produc<strong>in</strong>g embryos of the desired sex. Whilst there are variations,these methods fall broadly <strong>in</strong>to two types:●●gradient methods, where live sperm are put with a dense liquid <strong>and</strong> typicallyspun <strong>in</strong> a centrifuge to separate X <strong>and</strong> Y sperm (this may be comb<strong>in</strong>ed with‘swim-up’, where the sperm swim through a differentiat<strong>in</strong>g medium)flow cytometry,where fluorescent dye which b<strong>in</strong>ds to DNA <strong>in</strong> the chromosomesis <strong>in</strong>troduced to the semen sample, allow<strong>in</strong>g the sperm to be separatedsubsequently us<strong>in</strong>g a laser23. Both these techniques were orig<strong>in</strong>ally developed <strong>in</strong> veter<strong>in</strong>ary medic<strong>in</strong>e <strong>in</strong> order to<strong>in</strong>crease the chance of breed<strong>in</strong>g livestock of a particular sex; however dur<strong>in</strong>g the1990s they made the transition to use <strong>in</strong> <strong>human</strong>s. At the time of the HFEA’s previousconsultation on sex <strong>selection</strong> (1993), it was concluded that “the data on spermsort<strong>in</strong>g techniques do not support the use of these methods for medical reasons atthis time.” However sperm sort<strong>in</strong>g techniques have developed considerably over thelast ten years <strong>and</strong> further data are now available.24. Preconception techniques have the obvious advantage that the enriched spermsample can <strong>in</strong> pr<strong>in</strong>ciple be used <strong>in</strong> artificial <strong>in</strong>sem<strong>in</strong>ation, which is much less<strong>in</strong>vasive than IVF. As participants <strong>in</strong> our group discussions recognised, thiscomparative un-<strong>in</strong>vasiveness is likely to make these techniques attractive to a widergroup of people.“I suppose it depends on the degree of <strong>in</strong>tervention <strong>and</strong> what you expect. If it’s justeat<strong>in</strong>g lettuce <strong>and</strong> hop<strong>in</strong>g it’ll be a girl then that’s one th<strong>in</strong>g. If it starts <strong>in</strong>volv<strong>in</strong>gtablets or chemicals, or if it’s <strong>in</strong>trusive, [it’s another].” (Mother, 41-60, Ed<strong>in</strong>burgh)4There is a substantial amount of folklore concern<strong>in</strong>g how to obta<strong>in</strong> a child of the desired sex, with manycountries or regions hav<strong>in</strong>g their own local variations. Although there is little or no scientific basis for themajority of these methods, the existence of so many ‘old wives’ tales’ serves to illustrate that the desire toselect the sex of offspr<strong>in</strong>g is not conf<strong>in</strong>ed to a particular population or to a recent stage of history.Additionally, some studies have shown that occupational <strong>and</strong> lifestyle factors may affect sex ratios (forexample, deep-sea divers, fighter pilots <strong>and</strong> heavy smokers may be significantly more likely to conceivedaughters than the average population). Today, despite an absence of reliable evidence of success, somepeople try to <strong>in</strong>fluence the sex of their offspr<strong>in</strong>g through special diets <strong>and</strong> dietary supplements, or by thetim<strong>in</strong>g of sexual <strong>in</strong>tercourse <strong>in</strong> relation to when the woman’s egg is released (ovulation).Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction25. For some people, it is an important consideration that a technique reduces thelikelihood of embryos of the un<strong>in</strong>tended sex be<strong>in</strong>g produced, which would not thenbe used <strong>in</strong> treatment <strong>and</strong> might end up be<strong>in</strong>g destroyed. Many of the participants <strong>in</strong>our group discussions, even those who did not have strong religious views, drewattention to this, <strong>and</strong> this concern has also been recognised by the American Societyof Reproductive Medic<strong>in</strong>e:“A safe <strong>and</strong> effective means of separat<strong>in</strong>g X <strong>and</strong> Y-bear<strong>in</strong>g sperm before <strong>in</strong> vivoartificial <strong>in</strong>sem<strong>in</strong>ation or IVF is more likely to be sought by personscontemplat<strong>in</strong>g <strong>reproduction</strong>, for it causes no destruction of prenatal life <strong>and</strong> isless <strong>in</strong>vasive <strong>and</strong> costly than other methods.” 51126. Despite these apparent advantages, however, there are other considerations thatmust be taken <strong>in</strong>to account. Firstly, <strong>and</strong> most importantly, any health risksassociated with the technique must be considered. Follow<strong>in</strong>g that, s<strong>in</strong>ce none ofthese techniques is guaranteed to sort sperm with complete accuracy, the level ofefficacy or error rate must be taken <strong>in</strong>to account (although the error rate is likely todecrease as the technology is further ref<strong>in</strong>ed).Gradient Methods(a) Risk to health27. Whilst there is very little <strong>in</strong>formation on the health risks of us<strong>in</strong>g gradients <strong>in</strong> spermsort<strong>in</strong>g (<strong>and</strong> these will depend significantly on the nature of the gradient used) thereis currently no reason to suppose that the risks to women or offspr<strong>in</strong>g would besignificantly <strong>in</strong>creased by the use of this technique as the procedure is similar to thatrout<strong>in</strong>ely used to prepare sperm samples prior to IVF treatments.28. Where, as some studies have suggested is likely, there are <strong>in</strong>sufficient sperm availableto give a reasonable chance of success us<strong>in</strong>g <strong>in</strong>tra-uter<strong>in</strong>e <strong>in</strong>sem<strong>in</strong>ation (IUI)follow<strong>in</strong>g the sort<strong>in</strong>g procedure, IVF us<strong>in</strong>g the sorted sperm might berecommended. If this is the case, the risks associated with IVF (see below) shouldalso be taken <strong>in</strong>to account.(b) Reliability of outcome29. In order to compare the success rates of the various treatments it is necessary to beconsistent about the measure used. This is particularly important with spermsort<strong>in</strong>g, as success <strong>in</strong> separat<strong>in</strong>g sperm does not necessarily lead to similar success <strong>in</strong>produc<strong>in</strong>g a child of the <strong>in</strong>tended sex.5Ethics Committee of the American Society of Reproductive Medic<strong>in</strong>e, 2001Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction30. The basis for <strong>selection</strong> with gradient methods is the different constitution of X <strong>and</strong>Y chromosome bear<strong>in</strong>g sperm (X sperm have on average larger heads, necks <strong>and</strong>tails, higher dry mass, <strong>and</strong> 2%–3% more DNA than Y sperm). However, because<strong>human</strong> sperm exhibit a large degree of variation from average this difference is a lessreliable guide <strong>in</strong> <strong>human</strong>s than <strong>in</strong> animals.1231. Different gradient solutions have been tried <strong>and</strong> these yield different results. Forexample, album<strong>in</strong> gradients typically appear to have 15-30% error rate <strong>in</strong> separat<strong>in</strong>gsperm but it should be noted that most of the reports of success have come fromcl<strong>in</strong>ics that offer these methods on a commercial basis <strong>and</strong> their results have notbeen <strong>in</strong>dependently corroborated. Some laboratory studies suggest that if spermsort<strong>in</strong>g through album<strong>in</strong> gradients does contribute to sex <strong>selection</strong> it may not bedue to enrichment of X or Y sperm but rather to some other effect result<strong>in</strong>g fromthe exposure of sperm to the album<strong>in</strong> solution. Other gradients that have been triedhave not been shown to give cl<strong>in</strong>ically significant results <strong>in</strong> controlled studies.32. Where gradient separation is comb<strong>in</strong>ed with sperm migration <strong>in</strong> a medium (“swimup”) some reports suggest cl<strong>in</strong>ically mean<strong>in</strong>gful results <strong>in</strong> terms of birth outcome,although only <strong>in</strong> a small number of live births. However when genetic techniqueshave been used to assess the success of these methods <strong>in</strong> separat<strong>in</strong>g X <strong>and</strong> Y spermother studies have not found mean<strong>in</strong>gful changes <strong>in</strong> the ratio between the two.SummarySperm sort<strong>in</strong>g by gradients:pros <strong>and</strong> consPros✓ No apparent <strong>in</strong>creasedhealth risk✓ Cheaper than moretechnologically<strong>in</strong>tensive alternatives✓ Less likely that embryoswill be destroyedCons✗ Not completely reliable✗ Reasons for apparenteffectiveness unclear✗ Currently unregulated,therefore no qualitycontrolFlow cytometry(a) Risk to health33. Although reports of the success rates us<strong>in</strong>g flow cytometry are encourag<strong>in</strong>g, someconcerns persist regard<strong>in</strong>g the possible side-effects of the technique. Flow cytometryuses a proprietary DNA-b<strong>in</strong>d<strong>in</strong>g fluorescent dye to sta<strong>in</strong> the X <strong>and</strong> Y chromosomesof sperm. The sperm is then sorted based on this fluorescence. Large-scale studieswould be necessary to put beyond doubt the question of whether there is anylikelihood of damage to the sperm through the use of this technique.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction34. When the technique has been applied to domestic animals, however, studies <strong>in</strong>dicatethat offspr<strong>in</strong>g are normal. Data <strong>in</strong> cattle, pigs <strong>and</strong> rabbits from follow up studies onat least three successive generations (n<strong>in</strong>e <strong>in</strong> rabbits) report no <strong>in</strong>creased levels tomalformation <strong>and</strong> reproductive dysfunction after flow cytometry has been used tosort sperm. However these studies have only <strong>in</strong>volved a few hundred animals <strong>and</strong>there is some <strong>in</strong>dication that us<strong>in</strong>g the technique decreases sperm motility <strong>and</strong>embryo survival rate.35. Currently, the American Food <strong>and</strong> Drug Adm<strong>in</strong>istration (FDA) is conduct<strong>in</strong>g alarge-scale evaluation of this technique which should be complete with<strong>in</strong> the nexttwo years. If it is to be used <strong>in</strong> <strong>human</strong>s on a licensed basis <strong>in</strong> the UK, the HFEAproposes to monitor outcomes very closely.13(b) Reliability of outcome36. Some reports suggest that when genetic test<strong>in</strong>g has been used to confirm the successof this technique, purities of X- <strong>and</strong> Y-bear<strong>in</strong>g sperm of 70%–90% have beendetected – a 1995 report, for example, showed success rates of between 80% <strong>and</strong>86% for sperm separation. Follow<strong>in</strong>g this a report on 332 patients <strong>in</strong> which 96pregnancies were achieved follow<strong>in</strong>g 663 treatment cycles, the desired sex wasobta<strong>in</strong>ed <strong>in</strong> 94% of cases (37/39) for parents desir<strong>in</strong>g females <strong>and</strong> <strong>in</strong> 73% (11/15)for males.37. However other studies have suggested that the error rate <strong>in</strong> separat<strong>in</strong>g sperm doesnot necessarily correspond to the rate of failure to produce a child of the <strong>in</strong>tendedsex, <strong>in</strong>dicat<strong>in</strong>g aga<strong>in</strong> that other factors besides the chromosomal (such as the tim<strong>in</strong>gof fertilisation or the conditions with<strong>in</strong> the woman’s uterus) may play a part <strong>in</strong>determ<strong>in</strong><strong>in</strong>g which sperm will fertilise the egg <strong>and</strong> which children will be born.38. However, pregnancy rates are good thus allow<strong>in</strong>g the use of sorted sperm <strong>in</strong> <strong>in</strong>trauter<strong>in</strong>e<strong>in</strong>sem<strong>in</strong>ation (IUI) rather than the more <strong>in</strong>vasive <strong>and</strong> expensive IVF. Whilstthe success rate of artificial <strong>in</strong>sem<strong>in</strong>ation per cycle rema<strong>in</strong>s relatively low (aroundten per cent on average), there are likely to be sufficient sperm sorted at one time toallow a number of cycles to be carried out. This widens the availability of thetechnology <strong>and</strong> reduces costs although despite its apparently high success rate <strong>in</strong>separat<strong>in</strong>g sperm, even the small error rate (for select<strong>in</strong>g females) may beunacceptable to patients seek<strong>in</strong>g to avoid a severe sex-l<strong>in</strong>ked disease.39. Furthermore, this technique is currently only available under commercial licencefrom a company based <strong>in</strong> the United States, <strong>and</strong> the equipment required to providethis technique rema<strong>in</strong>s expensive.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionSummarySperm sort<strong>in</strong>g by flowcytometry: pros <strong>and</strong> consPros✓ Relatively high successrate✓ Sperm can be used for<strong>in</strong>sem<strong>in</strong>ation ratherthan more <strong>in</strong>vasive IVFCons✗ Not completely reliable✗ Currently unregulated,therefore no<strong>in</strong>dependent qualitycontrol14✓ Less likely that embryoswill be destroyed✗ No conclusive studiesconfirm<strong>in</strong>g safety foruse <strong>in</strong> <strong>human</strong>s,although nocontra<strong>in</strong>dications fromuse <strong>in</strong> domestic cattlePreimplantation sex <strong>selection</strong>40. A more reliable way of determ<strong>in</strong><strong>in</strong>g the sex of offspr<strong>in</strong>g than those discussed aboveis to use a technique called preimplantation genetic diagnosis (PGD). The techniquetypically <strong>in</strong>volves several stages: the creation of embryos <strong>in</strong> the laboratory by IVF, theremoval of one or more cells from each embryo – a procedure which should notimpair the development of the embryos – the genetic test<strong>in</strong>g of those cells for thepresence of X or Y chromosomes, <strong>and</strong> the transfer of embryos of the required sex tothe woman.41. Although this technique is highly reliable, because the embryos all have to be createdbefore they can be tested it is likely that those that are not of the required sex will bediscarded. On the other h<strong>and</strong>, there is also the possibility that if there are relativelyfew embryos created, or if those created do not develop sufficiently well to survive,there will be no embryos of the required sex available for transfer <strong>in</strong> any one cycle ofIVF.(a) Risk to health42. Because this procedure tests the sex of cells taken from the actual embryos that willbe transferred <strong>and</strong> uses well-established methods of genetic test<strong>in</strong>g, it has a highdegree of reliability when performed by a skilled scientist.43. As far as the result<strong>in</strong>g child is concerned, PGD is safer <strong>in</strong> theory than sperm sort<strong>in</strong>gtechniques because the test<strong>in</strong>g is conducted on cells that have been removed from(<strong>and</strong> are not replaced <strong>in</strong>) the embryo that will be transferred to the woman. Thismeans that there is no danger of the genetic tests used damag<strong>in</strong>g the embryo itself.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction44. However, because cells must be removed (biopsy) there is a small risk of damage tothe embryo as a result of this procedure. 6 Embryo damage dur<strong>in</strong>g biopsy usuallymeans that the embryos do not develop <strong>and</strong> are not therefore transferred, so there isno reason to believe that there is any <strong>in</strong>creased health risk to a liveborn childfollow<strong>in</strong>g from this technique: embryos not damaged dur<strong>in</strong>g biopsy should cont<strong>in</strong>ueto develop normally.45. Nevertheless, because PGD is conducted on embryos created by IVF, the risks thatare associated with IVF <strong>in</strong> general must also be taken <strong>in</strong>to account. These <strong>in</strong>cludeovarian hyperstimulation syndrome (OHSS), a potentially life-threaten<strong>in</strong>g conditionthat can be caused by the drugs used to stimulate the woman’s ovaries to producelarge numbers of eggs (although women at risk are identified prior to treatment),<strong>and</strong> risks associated with multiple births if more than one embryo is transferred.15(b) Reliability of outcome46. When performed by skilled cl<strong>in</strong>icians <strong>and</strong> scientists sex<strong>in</strong>g embryos by PGD has arelatively low misdiagnosis rate (less than one per cent on average). There is also asmall risk that the probes used will not b<strong>in</strong>d to the DNA <strong>and</strong> there will be a failure todiagnose; patients <strong>and</strong> cl<strong>in</strong>icians will then be faced with a <strong>choice</strong> of whether todiscard the embryo or risk transferr<strong>in</strong>g it when its status is unknown. (It is notusually possible to re-test embryos where a diagnosis is <strong>in</strong>conclusive.)47. Whilst many now regard IVF as comparable with natural conception <strong>in</strong> itslikelihood of success (around 20 per cent per cycle started) the success rate (aga<strong>in</strong>,per cycle started) follow<strong>in</strong>g PGD is slightly lower than ‘straightforward’ IVF, ataround 12 per cent.48. Additionally, as eggs are used fresh <strong>and</strong> only a proportion of those fertilised willdevelop normally, cl<strong>in</strong>icians typically fertilise more than they need to give a goodchance of obta<strong>in</strong><strong>in</strong>g enough suitable embryos. Whilst <strong>in</strong> rout<strong>in</strong>e IVF treatmentsembryos, unlike eggs, can generally be frozen for future treatment – so if the womanis unsuccessful at the first attempt, the frozen embryos can be thawed <strong>and</strong>transferred <strong>in</strong> a future cycle – the survival rate of embryos from which cells havebeen removed for test<strong>in</strong>g is currently very low, so this option is not generallyavailable. Women may therefore have to go through repeated ‘fresh’ cycles (<strong>in</strong>volv<strong>in</strong>ghormone stimulation with its associated risks <strong>and</strong> <strong>in</strong>vasive egg collection) until theyare successful.6In the UK, embryo biopsy practitioners are required to demonstrate that they can perform the procedurereliably without damag<strong>in</strong>g embryos.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionSummaryPreimplantation sex<strong>selection</strong>: pros <strong>and</strong> consPros✓ Established technique✓ Reliable diagnosisCons✗ Invasive <strong>and</strong> disruptive– requires IVFtreatment16✓ Closely regulated <strong>and</strong>monitored <strong>in</strong> the UK✗ May result <strong>in</strong> embryosof the un<strong>in</strong>tended sexbe<strong>in</strong>g produced whichmight then have to bediscarded✗ More expensive thansperm sort<strong>in</strong>gtechniquesComb<strong>in</strong>ed methods49. A third option is to comb<strong>in</strong>e the two approaches discussed above (sperm sort<strong>in</strong>g<strong>and</strong> PGD) <strong>and</strong> to conduct PGD on embryos that have been created with sperm thathas already been sorted <strong>in</strong>to ‘X’ <strong>and</strong> ‘Y’ samples.50. Whilst this approach still requires IVF <strong>and</strong> is likely to be more costly than either ofthe other methods used s<strong>in</strong>gly, it offers the accuracy of PGD with a higher chance ofsuitable embryos be<strong>in</strong>g available for transfer by m<strong>in</strong>imis<strong>in</strong>g the chances thatembryos of the un<strong>in</strong>tended sex will be created <strong>in</strong> the first place. On the other h<strong>and</strong>as only two embryos may be transferred <strong>in</strong> one IVF cycle if more than two eggs arefertilised it may still result <strong>in</strong> more embryos be<strong>in</strong>g created than can be used.Post-implantation sex <strong>selection</strong>51. The oldest methods of sex <strong>selection</strong> are those which <strong>in</strong>volve select<strong>in</strong>g which childrenwill be born by term<strong>in</strong>at<strong>in</strong>g pregnancies where fetuses are shown, through prenataltest<strong>in</strong>g, to be of the undesired sex, or, <strong>in</strong>deed simply kill<strong>in</strong>g new-born <strong>in</strong>fants of theundesired sex (<strong>in</strong>fanticide).52. Term<strong>in</strong>ation of pregnancy on grounds of fetal sex alone is illegal <strong>in</strong> the UK underthe Abortion Act 1967, although <strong>in</strong> cases <strong>in</strong> which there is a serious sex-l<strong>in</strong>keddisease there might be grounds for term<strong>in</strong>at<strong>in</strong>g a pregnancy if the fetus is at risk orif cont<strong>in</strong>u<strong>in</strong>g the pregnancy will risk damag<strong>in</strong>g the mental or physical health of thewoman or other children <strong>in</strong> the family.53. Infanticide is illegal <strong>in</strong> the UK.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionSummaryPost-implantation sex<strong>selection</strong>: pros <strong>and</strong> consPros✓ Very reliable diagnosisCons✗ Illegal <strong>in</strong> the UK(except for theavoidance of seriousdisease)✗ Highly <strong>in</strong>vasive(<strong>in</strong>volves term<strong>in</strong>ationof pregnancy)17Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPart Four: Legal And Regulatory Issues1854. Aside from those th<strong>in</strong>gs which are explicitly prohibited by law (with which thisconsultation will not be concerned), the Human Fertilisation <strong>and</strong> Embryology Act1990 gives the HFEA the power to control, through the licences it issues, the k<strong>in</strong>ds ofpractice that may take place <strong>in</strong> licensed centres. Licences under the Act are requiredby any centre that carries out <strong>in</strong> vitro fertilisation (IVF), uses donated gametes(<strong>in</strong>clud<strong>in</strong>g donor <strong>in</strong>sem<strong>in</strong>ation), stores gametes <strong>and</strong> embryos, or carries out researchus<strong>in</strong>g <strong>human</strong> embryos.55. Follow<strong>in</strong>g a consultation on preimplantation genetic diagnosis <strong>in</strong> 1999 theHFEA confirmed that sex <strong>selection</strong> us<strong>in</strong>g PGD (<strong>and</strong> PGD <strong>in</strong> general) shouldonly be available where there is a significant risk of a serious genetic conditionbe<strong>in</strong>g present <strong>in</strong> the embryo. This is consistent with current guidance onterm<strong>in</strong>ation of pregnancy follow<strong>in</strong>g (post-implantation) prenatal diagnosisif a fetus is shown to be at risk. The terms ‘significant risk’ <strong>and</strong> ‘serious geneticcondition’ are <strong>in</strong>evitably contested <strong>and</strong> require to be <strong>in</strong>terpreted <strong>in</strong> relation togiven cl<strong>in</strong>ical situations. The HFEA has developed guidel<strong>in</strong>es on what constitutesreasonable grounds for the use of PGD.“Haemophilia, that’s different, that’s a serious problem. Colour bl<strong>in</strong>dness isn’t aserious problem.” (Mother, 41-60, Ed<strong>in</strong>burgh)56. However where the treatment does not <strong>in</strong>volve the creation of embryosoutside the <strong>human</strong> body or the use of donor gametes (i.e. where the fresh spermof a woman’s partner is used for <strong>in</strong>sem<strong>in</strong>ation) the HFEA does not have the powerto licence <strong>and</strong> regulate the treatment. 7 Therefore whilst PGD is closely regulated<strong>in</strong> the UK, sperm sort<strong>in</strong>g can be offered at unlicensed cl<strong>in</strong>ics, thereby escap<strong>in</strong>gregulation. (Centres that are licensed by the HFEA for other treatments shouldnot use sperm sort<strong>in</strong>g techniques as this is currently contrary to the HFEA’s Codeof Practice.)57. The Human Fertilisation <strong>and</strong> Embryology Act 1990 <strong>and</strong> the HFEA Code of Practiceimpose strict requirements on centres offer<strong>in</strong>g licensed treatments. These <strong>in</strong>clude:●that centres may only use those licensable techniques for which they have a licencefrom the HFEA7Similarly, methods of assisted conception that do not <strong>in</strong>volve fertilisation outside the body, for examplegamete <strong>in</strong>tra-fallopian transfer (GIFT) – <strong>in</strong> which a woman’s eggs are collected <strong>and</strong> returned to herfallopian tubes with her partner’s sperm so that fertilisation occurs with<strong>in</strong> her body – do not require alicence from the HFEA.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction●●●●●that cl<strong>in</strong>ics complete an assessment of the welfare of the prospective child beforeany treatment may be providedthat fully <strong>in</strong>formed consent is obta<strong>in</strong>ed from people receiv<strong>in</strong>g treatmentthat people seek<strong>in</strong>g treatment are offered <strong>in</strong>dependent counsell<strong>in</strong>g concern<strong>in</strong>g theimplications of their treatmentthat <strong>in</strong>formation relat<strong>in</strong>g to treatments is recorded <strong>and</strong> reported <strong>in</strong> order tosafeguard this <strong>in</strong>formation <strong>and</strong> to permit monitor<strong>in</strong>g of treatments <strong>and</strong> thecentres provid<strong>in</strong>g themthat an annual <strong>in</strong>spection is carried out of the premises, staff <strong>and</strong> records of allcentres provid<strong>in</strong>g treatment1958. The HFEA cannot license any technique unless it believes the technique tobe necessary or desirable for the purpose of provid<strong>in</strong>g treatment services.Therefore <strong>in</strong> determ<strong>in</strong><strong>in</strong>g whether a new technique is to be licensed the Authorityas a whole must first decide whether a technique should be permitted <strong>in</strong> general(whether it is ethically acceptable, whether any health risks associated with it areacceptable, <strong>and</strong> whether its use is <strong>in</strong> the <strong>in</strong>terests of public health) <strong>and</strong> thenan HFEA licence committee must decide whether a particular centre shouldbe allowed to use it.59. When centres apply to the HFEA to use techniques they must satisfy the licencecommittee that their premises, equipment <strong>and</strong> personnel meet st<strong>and</strong>ards that ensurethat they are capable of deliver<strong>in</strong>g an acceptable quality of service to the public.(Whilst unlicensed centres may operate to high st<strong>and</strong>ards, there is no <strong>in</strong>dependentassurance that those st<strong>and</strong>ards will be met.)60. Argu<strong>in</strong>g for the regulation of sperm sort<strong>in</strong>g is therefore not the same as argu<strong>in</strong>g forit to be allowed to take place. Depend<strong>in</strong>g on the view taken as to its moralacceptability, its desirability, <strong>and</strong> the risks associated with it among other th<strong>in</strong>gs,regulat<strong>in</strong>g sperm sort<strong>in</strong>g may mean that it will not be permitted <strong>in</strong> the UK.Alternatively, it may mean that it will be permitted, but only <strong>in</strong> strictly controlledcircumstances (e.g. for certa<strong>in</strong> purposes), or only when the technology is proven tobe sufficiently risk-free <strong>and</strong> reliable.“It should be monitored by… a specialist organisation. I don’t want to be too hardon the medical profession, but doctors… may be quite lackadaisical aboutregulat<strong>in</strong>g.” (Female, 18-30, Belfast)61. If sperm sort<strong>in</strong>g is to be regulated by the HFEA, this does not mean that it will beavailable on the NHS except for medical reasons. In fact, it is likely that (other thanwhere it is used for medical reasons) the additional cost of regulat<strong>in</strong>g the techniquewill fall on those us<strong>in</strong>g the treatment.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionSummaryRegulationPermitted uses20Sperm sort<strong>in</strong>gUnregulated where freshpartner’s sperm is used for<strong>in</strong>sem<strong>in</strong>ation. Wheredonor sperm is used orwhen it <strong>in</strong>volves IVF it isregulated by the HFEAunder the HumanFertilisation <strong>and</strong>Embryology Act 1990Not currently permittedfor regulated uses. Can beoffered by unlicensedcentres for any purposewhere use is unregulatedPreimplantation GeneticDiagnosisIllegal without licence.Licences are issued byHFEA under the HumanFertilisation <strong>and</strong>Embryology Act 1990Permitted only for medicalreasons (avoidance ofserious sex-l<strong>in</strong>kedconditions)Term<strong>in</strong>ation of PregnancyRegulated under theAbortion Act 1967 (asamended)Permitted only for medicalreasonsHuman Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPart Five: Ethical/Social IssuesWhat people have said62. We have seen that some uses of sex <strong>selection</strong> are currently viewed as ethicallyacceptable. The question therefore is where to draw the l<strong>in</strong>e between acceptable <strong>and</strong>unacceptable uses of sex <strong>selection</strong>. This is a very difficult task <strong>and</strong> this sectionconsiders some of the arguments that help people to draw this l<strong>in</strong>e. Many of themwill be relevant to the questionnaire that follows.2163. In our discussion groups we found that overall, hav<strong>in</strong>g discussed the issues, peopletended to fall <strong>in</strong>to one of three broad categories, although sex <strong>selection</strong> was found tobe a subject on which absolute agreement between two people on every po<strong>in</strong>t wasvery rare.● One group felt that any <strong>in</strong>terference with natural conception – <strong>in</strong>clud<strong>in</strong>g IVF –was wrong, <strong>and</strong> that resources should be put <strong>in</strong>to support<strong>in</strong>g those withdisabilities rather than prevent<strong>in</strong>g them from be<strong>in</strong>g born.●●A second group felt that the current approach, of only allow<strong>in</strong>g sex <strong>selection</strong> forthe avoidance of serious disease us<strong>in</strong>g methods of proven accuracy, was correctalthough they thought that people should be able to use sperm sort<strong>in</strong>g <strong>in</strong>comb<strong>in</strong>ation with PGD.A third group felt that if the technology exists people should be given access to it,s<strong>in</strong>ce it has the capacity to fulfil people’s wishes, provided that it does not causeharm to either the people concerned or to their offspr<strong>in</strong>g. Nevertheless, this groupwould like to see the use of the techniques closely monitored <strong>and</strong> regulated.Medical reasons64. The most straightforward area <strong>in</strong> which sex <strong>selection</strong> might be seen as acceptable iswhere it is used to enable prospective parents to avoid hav<strong>in</strong>g a child with a serioussex-l<strong>in</strong>ked disorder.65. Despite a relative lack of knowledge about the medical reasons for sex <strong>selection</strong>,public op<strong>in</strong>ion does appear to favour this type of <strong>in</strong>tervention. The view taken bythe HFEA at present is that where there is a clearly identified risk of a couple hav<strong>in</strong>ga child with a serious genetic disorder, the <strong>choice</strong>s must be left to the couple orwoman, <strong>and</strong> that no pressure should be exerted upon the woman to have – or<strong>in</strong>deed not to have – a child that may have <strong>in</strong>herited a serious sex-l<strong>in</strong>ked diseasei.66. There is a strong feel<strong>in</strong>g – from the general public <strong>and</strong> also from service providers –that this area should be properly regulated. The HFEA’s research also shows a desireHuman Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproductionfor more considered debate <strong>in</strong> this area to provide well-understood guidel<strong>in</strong>es forsex <strong>selection</strong> on medical grounds.“If that is what they are allow<strong>in</strong>g at the m<strong>in</strong>ute, then f<strong>in</strong>e, I agree with that, butthey just have to be careful about bend<strong>in</strong>g the rules.” (Father, 41-60, London)2267. However, the practice of sex <strong>selection</strong> <strong>in</strong> order to avoid children with seriousdisabilities gives rise to concerns about unacceptable consequences if <strong>choice</strong>s made<strong>in</strong> <strong>in</strong>dividual cases were to be generalised to the whole population. Some areconcerned that certa<strong>in</strong> genetic conditions should not be allowed to be eradicatedfrom the gene pool <strong>in</strong> this way s<strong>in</strong>ce they may have <strong>in</strong>tr<strong>in</strong>sic value. Others raisemore general objections that permitt<strong>in</strong>g <strong>in</strong>dividual <strong>choice</strong> <strong>in</strong> this matter(which, for reasons of justice could not then be denied to any who were <strong>in</strong> a similarposition) amounts to condon<strong>in</strong>g – albeit un<strong>in</strong>tentionally – an unacceptable ‘eugenic’practice. A further objection often raised is that there is a considerable danger thatothers will draw from the <strong>choice</strong>s of <strong>in</strong>dividual parents to avoid hav<strong>in</strong>g a disabledchild the illegitimate <strong>in</strong>ference that disabled people are <strong>in</strong> some way <strong>in</strong>ferior be<strong>in</strong>gswho should not have been brought <strong>in</strong>to existence.68. Similarly there are concerns about the morality of eradicat<strong>in</strong>g a certa<strong>in</strong> conditionfrom a family blood l<strong>in</strong>e, especially if the risk is not an immediate one. 8 This servesto demonstrate that do<strong>in</strong>g someth<strong>in</strong>g for a medical reason is not the same th<strong>in</strong>g ashav<strong>in</strong>g a good medical reason to do it. Alternatively, whilst there may be goodmedical reasons to do someth<strong>in</strong>g, there may be better countervail<strong>in</strong>g reasons,medical or otherwise, not to do it.69. Furthermore, people have serious reservations about how exist<strong>in</strong>g legislation <strong>and</strong>practice might be used to extend <strong>choice</strong>s to couples <strong>and</strong> women who are look<strong>in</strong>g fora child with certa<strong>in</strong> desirable characteristics which have no bear<strong>in</strong>g on that child’shealth or physical well-be<strong>in</strong>g. At what po<strong>in</strong>t might the desire to have a healthy childtranslate <strong>in</strong>to want<strong>in</strong>g a more ‘perfect’ child?Non-medical reasons70. The issue which attracts most controversy is the possibility of sex <strong>selection</strong> fornon-medical reasons, the k<strong>in</strong>ds of personal <strong>and</strong> socio-economic reason identifiedearlier (see Part Two). The HFEA’s research <strong>in</strong>dicates that when the public are<strong>in</strong>vited to consider the acceptability of sex <strong>selection</strong> for these reasons, those<strong>in</strong>terviewed quickly break down the argument <strong>in</strong>to issues concern<strong>in</strong>g one’s situation8The eradication of a disorder from the germ l<strong>in</strong>e (as opposed to the liv<strong>in</strong>g population) is unlikely to occurwhen sex <strong>selection</strong> for X-l<strong>in</strong>ked disorders is used s<strong>in</strong>ce female ‘carrier’ embryos will still be selected. (Thismight be a reason for some to prefer sex <strong>selection</strong> to direct test<strong>in</strong>g of embryos for the condition.) HoweverSpanish doctors have recently turned the technique around to select (unaffected) male embryos from menaffected by haemophilia <strong>in</strong> order to eradicate this condition from future generations of their family.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproductionas citizen <strong>and</strong> consumer, to moral <strong>and</strong> religious beliefs, <strong>and</strong> to issues relat<strong>in</strong>g toparenthood <strong>and</strong> family. Concerns raised by participants <strong>in</strong> our research typically<strong>in</strong>cluded:As a citizen, do we have the right to restrict other people’s <strong>choice</strong>s?If the method is available, then everyone should have access to it.If both parents <strong>and</strong> the child are go<strong>in</strong>g to benefit, what can the problems be?It will happen anyway, <strong>and</strong> we as citizens have little power to stop it.23If it is go<strong>in</strong>g to happen <strong>in</strong> the UK, it must be regulated.Allow<strong>in</strong>g sex <strong>selection</strong> for non-medical reasons will send out worry<strong>in</strong>g signalsabout gender preferences.Anyone who wants to have a child cannot approach parenthood with suchspecific expectations – on the other h<strong>and</strong>, nobody wants a child unconditionally.Hav<strong>in</strong>g a child is an adventure which cannot <strong>and</strong> should not be so rigorouslyplanned.71. Once one beg<strong>in</strong>s to th<strong>in</strong>k through the matter, there is a wide range of complexconsiderations to be addressed. But however complex the issues <strong>in</strong>volved may be,they do need to be addressed. Sperm sort<strong>in</strong>g is already be<strong>in</strong>g used <strong>in</strong> the USA, <strong>and</strong>other countries are readily offer<strong>in</strong>g sex <strong>selection</strong> by PGD for non-medical reasons tothose who are will<strong>in</strong>g to travel there for treatment. At the same time high-profile<strong>in</strong>dividual cases <strong>in</strong> the UK are regularly test<strong>in</strong>g public <strong>and</strong> professional op<strong>in</strong>ion <strong>and</strong>attitudes towards those who permit, provide <strong>and</strong> choose to make use of assistedreproductive services.72. This consultation may not provide absolute answers to complex questions ofmedical ethics, religious op<strong>in</strong>ion, <strong>in</strong>dividual freedoms <strong>and</strong> the rights of unbornchildren. What the consultation should do is provide the HFEA <strong>and</strong> the UKGovernment with views on how <strong>and</strong> whether legislation <strong>and</strong> related medicalpractice is truly benefit<strong>in</strong>g patients, <strong>and</strong> how any regulation should be conducted tosafeguard the <strong>in</strong>terests of patients <strong>and</strong> the public, <strong>and</strong> protect the welfare of childrenborn as a result.73. In what follows, this document seeks to lay out the ma<strong>in</strong> considerations for <strong>and</strong>aga<strong>in</strong>st sex <strong>selection</strong> for non-medical reasons <strong>in</strong> the light of recent advances <strong>in</strong>technology <strong>and</strong> research.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionThe permissive argument for sex <strong>selection</strong>74. A fundamental argument <strong>in</strong> favour of permitt<strong>in</strong>g sex <strong>selection</strong> for non-medicalreasons is that where no one, <strong>in</strong>clud<strong>in</strong>g any future child, is harmed by thistechnique, it is not the state’s proper bus<strong>in</strong>ess to <strong>in</strong>tervene <strong>in</strong> order to prevent it. 924“It should be up to the <strong>in</strong>dividual. A lot of people will choose to get pregnant <strong>and</strong>take what they get, others will want to choose, even if they haven’t got anychildren so far.” (Father, 25-40, Ed<strong>in</strong>burgh)75. This argument is entirely consistent with the further thought that it would be properfor the state to <strong>in</strong>tervene <strong>in</strong> order to regulate this activity (as applies already <strong>in</strong> thecase of IVF). Indeed there is a strong argument that this is an area <strong>in</strong> whichregulation should be required – partly to ensure that st<strong>and</strong>ards of public health <strong>and</strong>safety are ma<strong>in</strong>ta<strong>in</strong>ed, but also to ensure that the activity is carried out <strong>in</strong> a waywhich complies with the reasons for which it is permitted.76. If the HFEA were to regulate all forms of sex <strong>selection</strong>, however, an extension of itspresent remit would be required to cover the use of sperm sort<strong>in</strong>g where this is notcomb<strong>in</strong>ed with IVF or some other technique which is currently regulated. On theother h<strong>and</strong> some have suggested that the degree of regulation might be relative tothe method used <strong>and</strong> that if the method is comparatively un-<strong>in</strong>vasive <strong>and</strong> does not<strong>in</strong>volve the creation of embryos outside the body it should be left to <strong>in</strong>dividuals.Others did not accept this:“Sperm sort<strong>in</strong>g doesn’t change the ethics, it just changes the plumb<strong>in</strong>g.” (Father,25-40, Ed<strong>in</strong>burgh)77. There is more to be said about this permissive argument, but it is useful first to<strong>in</strong>troduce the ma<strong>in</strong> arguments aga<strong>in</strong>st sex <strong>selection</strong> for non-medical reasons.Arguments aga<strong>in</strong>st sex <strong>selection</strong>(a) ‘Play<strong>in</strong>g God’78. Many people feel that those who practice sex <strong>selection</strong> for non-medical reasons areseek<strong>in</strong>g to exercise control over a matter which should be left uncontrolled. Forsome people, this attitude is related to their religious faith – it is for God, <strong>and</strong> not forman, to determ<strong>in</strong>e the sex of a future child.“It’s wrong for any reason. It’s say<strong>in</strong>g you know better than what Allah wanted foryou.” (Muslim father, 25-40, London)9The com<strong>in</strong>g <strong>in</strong>to force of the Human Rights Act 1998 has given a renewed force to arguments assert<strong>in</strong>g therights of the <strong>in</strong>dividual aga<strong>in</strong>st <strong>in</strong>terference from the state.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction79. Aside from arguments that sex <strong>selection</strong> is contrary to div<strong>in</strong>e law, many religiousobjections are concerned with arguments about not artificially <strong>in</strong>hibit<strong>in</strong>g <strong>human</strong>flourish<strong>in</strong>g or <strong>in</strong>fr<strong>in</strong>g<strong>in</strong>g the <strong>in</strong>herent dignity of <strong>human</strong> be<strong>in</strong>gs. Others seek to drawconclusions about what is acceptable from the notion of a common <strong>human</strong>ity thatmust be respected. However objections of this sort need not be religious; <strong>in</strong>steadthey can simply be <strong>in</strong>formed by a recognition that <strong>in</strong> hav<strong>in</strong>g a child parents arebr<strong>in</strong>g<strong>in</strong>g <strong>in</strong>to existence a <strong>human</strong> be<strong>in</strong>g whom they should seek to nurture, but notto design or control.“In the end you have to say that some th<strong>in</strong>gs just aren’t right. This is more than<strong>choice</strong> because you are <strong>in</strong>terfer<strong>in</strong>g with th<strong>in</strong>gs. You’re not say<strong>in</strong>g: ‘Oh, I’ll havethat one on the shelf there’.” (Male, 18-30, Cardiff)2580. Whilst some faith groups disagree with all medically assisted conception, believ<strong>in</strong>gthat it represents <strong>in</strong>terference with the will of God, others who accept basic IVF stillhave pr<strong>in</strong>cipled reservations about embryo <strong>selection</strong>, particularly where this willresult <strong>in</strong> embryos be<strong>in</strong>g destroyed.(b) <strong>Sex</strong> discrim<strong>in</strong>ation81. When one looks to the non-medical reasons prospective parents might have forsex <strong>selection</strong>, they are bound to <strong>in</strong>volve parental preferences for hav<strong>in</strong>g a childof one sex rather than another <strong>and</strong> thus, one might say, for discrim<strong>in</strong>at<strong>in</strong>g betweenthe sexes. Hence, the argument goes, to permit sex <strong>selection</strong> for non-medical reasonsis implicitly to condone sex discrim<strong>in</strong>ation – for example, the k<strong>in</strong>d of discrim<strong>in</strong>ationwhereby male children are favoured heirs when questions of <strong>in</strong>heritance areconsidered.“Hav<strong>in</strong>g a boy is like magic gold but it feeds discrim<strong>in</strong>ation.” (Muslim father, 25-40,London)82. For many people this is an important consideration, especially for those proponentsof the permissive argument whose liberal position <strong>in</strong>cludes a commitment tooppos<strong>in</strong>g discrim<strong>in</strong>ation on grounds of sex. They might respond that there are somenon-medical reasons for sex <strong>selection</strong> which are not based on objectionable formsof sex discrim<strong>in</strong>ation. The st<strong>and</strong>ard case here is that <strong>in</strong> which prospective parentswho have one or more children of one sex seek to ensure that a future child isof the other sex. This is sometimes known as ‘family balanc<strong>in</strong>g’ <strong>and</strong> is consideredfurther below.83. Issues of sex discrim<strong>in</strong>ation are likely to be tied up with other factors, such as social,cultural, political, religious <strong>and</strong> economic pressures, which underp<strong>in</strong> or nourishthem. In the UK <strong>in</strong> general the force of these is dim<strong>in</strong>ished <strong>in</strong> comparison withother countries, although they are still prevalent <strong>in</strong> some communities <strong>and</strong> sociodemographicgroups.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction“Times are such now that we shouldn’t discrim<strong>in</strong>ate by sex… What can boys dothat girls can’t now? We all have different relationships with mothers <strong>and</strong> sonsnowadays.” (Mother, 41-60, Ed<strong>in</strong>burgh)2684. One perceived problem with sex <strong>selection</strong> is that it susta<strong>in</strong>s the belief that sex – thatphysiological differences between men <strong>and</strong> women – determ<strong>in</strong>es temperament,social behaviour <strong>and</strong> other characteristic qualities of gender. Most participants <strong>in</strong>our discussion groups felt it was wrong to try to enforce gender roles although manythought this was impossible <strong>in</strong> any case:“If you choose a girl to take her to the ballet, then she could be the biggest tomboy<strong>in</strong> the world <strong>and</strong> you’d be disappo<strong>in</strong>ted. You can’t choose.” (Mother, 41-60,Ed<strong>in</strong>burgh)(c) The balance of the sexes85. In some countries, economic <strong>and</strong> social conditions have resulted <strong>in</strong> the use of sex<strong>selection</strong> be<strong>in</strong>g biased towards male children. Economic <strong>and</strong> social pressures mayencourage couples to have male children who can <strong>in</strong>herit family l<strong>and</strong>, provide forextended families, <strong>and</strong> get better paid jobs than women. Although the improvedstatus of women <strong>in</strong> most societies cont<strong>in</strong>ues to reduce the use of sex <strong>selection</strong> <strong>in</strong> thisway, <strong>in</strong> Ch<strong>in</strong>a, for example, there are currently 117 boys born for every 100 girls. 10The greatest dem<strong>and</strong> for sex <strong>selection</strong> for non-medical reasons worldwide cont<strong>in</strong>uesto come from countries such as India where social, economic <strong>and</strong> cultural pressuresstill favour males. One study has calculated that worldwide there are 100 million‘miss<strong>in</strong>g women’, women who were never born or who perished as <strong>in</strong>fants as a resultof sex <strong>selection</strong> practices, deliberate neglect or <strong>in</strong>fanticide. 11 It can be argued that notonly does this perpetuate damag<strong>in</strong>g social attitudes towards women, it also has aknock-on effect for future generations, with fewer prospective brides <strong>and</strong> mothersfor the <strong>in</strong>creas<strong>in</strong>g male population.“I th<strong>in</strong>k Nature gets it right on the whole, <strong>and</strong> I don’t th<strong>in</strong>k we would look atCh<strong>in</strong>a <strong>and</strong> places like that.” (Mother, 41-60, Ed<strong>in</strong>burgh)86. In European societies however, <strong>in</strong>clud<strong>in</strong>g the UK, studies have shown the thereis a preference for girls (although a preference for boys persists with<strong>in</strong> somecommunities). Data also suggest that it is couples with two or three childrenof the same sex <strong>and</strong> near<strong>in</strong>g the end of their reproductive life that are <strong>in</strong>terested<strong>in</strong> sex <strong>selection</strong> for social reasons. More generally, however, it can be argued thatif sex <strong>selection</strong> were restricted to family balanc<strong>in</strong>g it would not significantly alterthe overall sex ratio.10British Medical Journal, Vol. 324, 25 May 2002.11British Medical Journal, Vol. 304, 7 March 1992, pp.587-8.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction(d) Welfare of the child87. Whilst sex <strong>selection</strong> for medical reasons appears generally to be about the health <strong>and</strong>well-be<strong>in</strong>g of the prospective child, non-medical reasons tend to be about thepreferences of the prospective parents. As <strong>in</strong>dicated above (Part Three) current datashow that the most reliable current method of sperm sort<strong>in</strong>g leads to error <strong>in</strong> about25 per cent of cases <strong>in</strong> which a male child is sought <strong>and</strong> 5 per cent of cases <strong>in</strong> whicha female child is sought. Hence there are grounds for concern that a couple who seeka sex-selected child for non-medical reasons but who do not get the male or femalechild they want may have difficulties <strong>in</strong> accept<strong>in</strong>g their new child s<strong>in</strong>ce it is of the‘wrong’ sex, <strong>and</strong> that this may have profound implications for that child’s welfare. 1227“If someone wants a nose job <strong>and</strong> it goes wrong, then they just have to live with it.If someone’s been allowed to do this so that they can have a boy <strong>and</strong> it goes wrongthe consequences for that child are horrendous.” (Mother, 41-60, Ed<strong>in</strong>burgh)88. Pla<strong>in</strong>ly these issues are cont<strong>in</strong>gent upon the limited reliability of current spermsort<strong>in</strong>gtechniques <strong>and</strong> one can envisage the improvement <strong>and</strong> development ofmuch more reliable techniques <strong>in</strong> future. PGD is, as noted above, more reliable but itis also much more <strong>in</strong>vasive, expensive <strong>and</strong> ethically problematic, s<strong>in</strong>ce it <strong>in</strong>volves thecreation <strong>and</strong> disposal of unwanted embryos.89. Even where a child of the <strong>in</strong>tended sex is born, there are important anxieties aboutthe child’s welfare. How would a child react upon be<strong>in</strong>g <strong>in</strong>formed that it had beenselected for its sex? Furthermore there are similar concerns about the welfare ofother children that may be affected by the birth:“If you have to have three before you have the sex you want, what’s yourrelationship with those three go<strong>in</strong>g to be like?” (Mother, 41-60, Ed<strong>in</strong>burgh)(e) Equality90. <strong>Sex</strong> <strong>selection</strong> for non-medical reasons is unlikely to be made available through theNHS. As a result, depend<strong>in</strong>g on its cost, it may only be available to the relativelywell-off, <strong>and</strong> some feel that this is unfair.“When the discussion’s general, then you can th<strong>in</strong>k about these th<strong>in</strong>gs <strong>in</strong> a moralway, but when it comes to <strong>in</strong>dividuals, you get greedy.” (Mother, 25-40, London)12“A woman shall not be provided with treatment services unless account has been taken of the welfare ofany child that may be born as a result of the treatment (<strong>in</strong>clud<strong>in</strong>g the need of that child for a father), <strong>and</strong> ofany other child who may be affected by the birth.” (Human Fertilisation <strong>and</strong> Embryology Act 1990, section13(5)) Whilst this does not exclude any category of woman from be<strong>in</strong>g considered for treatment, beforeprovid<strong>in</strong>g treatment, licensed centres are required to take steps to discover whether there are any reasonswhy people should not be provided with treatment.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction91. Cl<strong>in</strong>ics have been quick to see the potential market for services offer<strong>in</strong>g sex <strong>selection</strong>for social reasons, <strong>and</strong> the emotive nature of procreation is used as a means ofencourag<strong>in</strong>g women to go for particular treatments at particular cl<strong>in</strong>ics. It should beobserved, however, that it is unlikely to cost as much as IVF (at least if it <strong>in</strong>volvesonly sperm-sort<strong>in</strong>g <strong>and</strong> IUI), which is not at present readily available on the NHS.So even if sex <strong>selection</strong> is not freely available to all, it can be argued that it is not easyto see that this is by itself a reason for prohibit<strong>in</strong>g it, any more than the fact that IVFis not currently freely available to all is a reason for prohibit<strong>in</strong>g IVF treatment.28(f) The ‘slippery slope’92. It is sometimes argued that to permit sex <strong>selection</strong> for non-medical reasons is to takea step down a ‘slippery slope’ which will lead <strong>in</strong>eluctably to permitt<strong>in</strong>g parents toselect embryos for frivolous reasons, <strong>and</strong> thus to the creation of ‘designer babies’.Most people <strong>in</strong> our discussion groups connected the higher expectations <strong>and</strong> morespecific dem<strong>and</strong>s of modern parents with consumerism enter<strong>in</strong>g <strong>in</strong>to <strong>reproduction</strong>from other areas of life.“Everyth<strong>in</strong>g has to be designer for the young ones; when they have babies, theyhave to come with a Gucci label.” (Mother, 41-60, Ed<strong>in</strong>burgh)93. On this view, there is no pr<strong>in</strong>cipled barrier between permitt<strong>in</strong>g sex <strong>selection</strong> <strong>and</strong>permitt<strong>in</strong>g <strong>selection</strong> of other traits such as hair or eye colour. However, theargument cont<strong>in</strong>ues, this is an outcome which is pla<strong>in</strong>ly unacceptable <strong>and</strong> this justreveals, <strong>in</strong> a magnified form, the unacceptability of start<strong>in</strong>g down this route with sex<strong>selection</strong> for non-medical reasons <strong>in</strong> the first place.94. This concern is related to the fact that as new techniques become available peoplewill always f<strong>in</strong>d plausible reasons for want<strong>in</strong>g to use them. Thus there will always bemarg<strong>in</strong>al cases which will erode the l<strong>in</strong>e that has been drawn between acceptable <strong>and</strong>unacceptable uses of technology.“People always want more, <strong>and</strong> if they know they can, they will. And they’ll argue‘who wouldn’t want to have a more <strong>in</strong>telligent child?’ Of course that child wouldhave a better life, <strong>and</strong> if we allow people to choose the sex of their child, wewouldn’t have a leg to st<strong>and</strong> on when they start on that road.” (Father, 41-60,London)95. Those who argue for the permissive approach may respond that the genetictechniques <strong>in</strong>volved <strong>in</strong> the <strong>selection</strong> of traits, particularly behavioural <strong>and</strong> charactertraits such as IQ <strong>and</strong> sexuality, are at present entirely speculative <strong>and</strong> are likely torema<strong>in</strong> so for a long time. Many would argue that this response is not by itselfpersuasive, however, s<strong>in</strong>ce the objection is that sex <strong>selection</strong> for non-medical reasonsembodies a commitment to approv<strong>in</strong>g of potentially objectionable possibilities(such as the <strong>selection</strong> of the sexuality of a child) even if they rema<strong>in</strong> onlyHuman Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproductionhypothetical possibilities. Hence as long as those argu<strong>in</strong>g for permissiveness endorsethe judgement that these possibilities are objectionable, someth<strong>in</strong>g further needs tobe added about the acceptability of the reasons prospective parents might have for sex<strong>selection</strong> which does not carry over to the <strong>selection</strong> of other physical or character traits.Family balanc<strong>in</strong>g96. As <strong>in</strong>dicated earlier, it is an implication of these arguments aga<strong>in</strong>st sex <strong>selection</strong> thatthe best case for sex <strong>selection</strong> for non-medical reasons is where it rests on the wishesof prospective parents who already have one or two children of one sex, to have achild of the other sex. For where this is the rationale beh<strong>in</strong>d it, objectionable formsof sex discrim<strong>in</strong>ation are not <strong>in</strong>volved.2997. But it can still be argued that even family balanc<strong>in</strong>g rema<strong>in</strong>s objectionable for someof the other reasons outl<strong>in</strong>ed above:●●●it <strong>in</strong>volves the attempt by parents to exercise control over a fundamental aspectof their future child, thus potentially <strong>in</strong>terfer<strong>in</strong>g with the unconditional love thatparents owe to their children <strong>and</strong> giv<strong>in</strong>g rise to anxiety about the attitude of theparents if a child of the ‘wrong’ sex is bornit is liable to <strong>in</strong>volve the imposition of stereotypical gender roles on a child ofthe ‘right’ sex who has been born by this techniqueunless more is said about the special nature of the rationale for family balanc<strong>in</strong>g,it is unclear what dist<strong>in</strong>guishes it from objectionable forms of <strong>selection</strong>, such asthe hypothetical <strong>selection</strong> of character traits98. The reply to these po<strong>in</strong>ts will be that for some prospective parents there isdist<strong>in</strong>ctive value <strong>in</strong> hav<strong>in</strong>g a family <strong>in</strong> which there are children of both sexes –both because the children will grow up with a member of the other sex <strong>and</strong> becausesome parents relate more directly to a child of the same sex than to one of the othersex. These are contentious claims, <strong>and</strong> many will say that there is noth<strong>in</strong>g wrongor ‘unbalanced’ about a family <strong>in</strong> which the children are all of one sex. Thosewho take the permissive view might respond that their argument does not <strong>in</strong>volvethe claim that there is anyth<strong>in</strong>g wrong about such families; all it does claim is that,for some people, there is someth<strong>in</strong>g potentially better about families where childrenare of both sexes – a claim which is much less contentious. The argument then turnson why, if this greater good can be realised by sex <strong>selection</strong> <strong>in</strong> a way which doesno harm to others, should the state seek to prevent it?99. Many will f<strong>in</strong>d this unpersuasive <strong>and</strong> will po<strong>in</strong>t back to the objections identifiedabove as reasons aga<strong>in</strong>st allow<strong>in</strong>g this form of sex <strong>selection</strong>. As was remarked earlier,it is not the purpose of this document to argue for a position one way or another.Instead, the aim is to facilitate rational debate on this sensitive issue so that anydecisions taken by Government are <strong>in</strong>formed by public op<strong>in</strong>ion. Therefore we verymuch hope that you will complete <strong>and</strong> return the enclosed questionnaire.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPart Six: AppendicesAppendix 1: Glossary30Assisted Reproductive Technologies(ARTs) — The collective name for alltechniques used artificially to assistwomen to carry children, <strong>in</strong>clud<strong>in</strong>gIVF, ICSI, PGD, <strong>and</strong> IUI.Chromosome — Chromosomes carry the<strong>in</strong>formation necessary for thedevelopment <strong>and</strong> function<strong>in</strong>g of thebody. Humans normally have 46chromosomes <strong>in</strong> the nucleus of theirbody’s cells (22 pairs plus two sexchromosomes, denoted X <strong>and</strong> Y).Donor — Donors are people who consentto allow their gametes or embryos tobe used <strong>in</strong> the treatment of others.Although donors are the geneticparents of children created us<strong>in</strong>g theirgametes, if the treatment is provided<strong>in</strong> a licensed centre <strong>in</strong> the UK theyare not the legal parents of thesechildren. (The legal parents are thewoman giv<strong>in</strong>g birth <strong>and</strong> usually herhusb<strong>and</strong> or male partner if she hasone.)Egg — The gamete produced by the femaledur<strong>in</strong>g her monthly cycle. Thenucleus of an egg always conta<strong>in</strong>s anX chromosome, hav<strong>in</strong>g 23chromosomes <strong>in</strong> all. In technicallanguage the egg is sometimes calledan oocyte.Embryo — An embryo is produced by thejo<strong>in</strong><strong>in</strong>g of egg <strong>and</strong> sperm(fertilisation). The embryo develops<strong>in</strong>to a fetus <strong>and</strong> then a baby.Fertilisation — Fertilisation is the jo<strong>in</strong><strong>in</strong>gof a sperm <strong>and</strong> an egg to produce anembryo. Naturally fertilisation occurs<strong>in</strong> the woman’s body (<strong>in</strong> vivo) butit can also occur <strong>in</strong> the laboratory(<strong>in</strong> vitro).Fetus — After about 4 weeks ofdevelopment <strong>in</strong> the woman’s womb,dur<strong>in</strong>g which its tissues have begun todifferentiate, the embryo becomes afetus.Flow cytometry (sperm sort<strong>in</strong>g) —A method of sperm sort<strong>in</strong>g that<strong>in</strong>volves sta<strong>in</strong><strong>in</strong>g the X <strong>and</strong> Ychromosome-bear<strong>in</strong>g sperm withdifferent fluorescent dyes, <strong>and</strong> thensort<strong>in</strong>g them accord<strong>in</strong>g to the colour.Gamete — The common name for eggs<strong>and</strong> sperm. A gamete has half thenumber of chromosomes of any othercell.Gradient — A dense liquid used to sortsperm.Gradient methods (sperm sort<strong>in</strong>g) —A method of sort<strong>in</strong>g sperm based onthe different constitution of X <strong>and</strong> Ysperm. The sperm are typically putwith a gradient <strong>and</strong> subjected tocentrifugation to separate them. (Thismay be comb<strong>in</strong>ed with swim-up.)Insem<strong>in</strong>ation — The <strong>in</strong>troduction ofsperm <strong>in</strong>to a woman’s body to createa pregnancy. Artificial <strong>in</strong>sem<strong>in</strong>ationcan be done us<strong>in</strong>g either freshlyejaculated sperm or sperm that hasbeen frozen. Where the sperm of adonor is used (donor <strong>in</strong>sem<strong>in</strong>ation orDI) this will have been frozen to allowtime for the donor to be screened fortransmissible diseases before<strong>in</strong>sem<strong>in</strong>ation takes place.Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionIn vitro fertilisation (IVF) — A commontechnique for overcom<strong>in</strong>g <strong>in</strong>fertility,whereby eggs are collected from thewoman <strong>and</strong> fertilised with sperm <strong>in</strong>the laboratory. Up to two result<strong>in</strong>gembryos are then transferred to thewoman’s uterus to beg<strong>in</strong> a pregnancy.Preimplantation Genetic Diagnosis (PGD)— A technique that allows cl<strong>in</strong>iciansto test embryos created <strong>in</strong> vitro for thepresence or absence of certa<strong>in</strong> genetictraits that would lead to severedisability. The HFEA (jo<strong>in</strong>tly with theAdvisory Committee on GeneticTest<strong>in</strong>g, now the Human GeneticsCommission) held a consultation onthe circumstances <strong>in</strong> which PGDshould be used <strong>in</strong> 1999.Sperm — The gamete produced by themale, usually through ejaculation.Millions of sperm are present <strong>in</strong> eachejaculate <strong>and</strong> roughly half of thesewill carry X chromosomes, the otherhalf carry<strong>in</strong>g Y chromosomes. Intechnical language a s<strong>in</strong>gle sperm issometimes called a spermatozoon.Sperm sort<strong>in</strong>g — The separation of spermcarry<strong>in</strong>g X chromosomes from thosecarry<strong>in</strong>g Y chromosomes prior tofertilisation <strong>in</strong> order to determ<strong>in</strong>e thesex of offspr<strong>in</strong>g.Swim up — A technique for separat<strong>in</strong>gsperm, based on their ability to swimthrough a liquid.Uterus — The woman’s womb, <strong>in</strong> whichthe embryo develops <strong>in</strong>to a baby.31Appendix 2: Consultation CriteriaThe Cab<strong>in</strong>et Office produces guidance for Government departments <strong>and</strong> agencies for UKnational public consultations.The consultation criteriaReproduced from the Cab<strong>in</strong>et Office Code of Practice on Written Consultation(www.cab<strong>in</strong>et-office.gov.uk/servicefirst/2000/consult/Index.htm)“The criteria <strong>in</strong> this code apply to all UK national public consultations on the basis ofa document <strong>in</strong> electronic or pr<strong>in</strong>ted form. They will often be relevant to other sortsof consultationThough they have no legal force, <strong>and</strong> cannot prevail over statutory or otherm<strong>and</strong>atory external requirements (e.g. under European Community law), theyshould otherwise generally be regarded as b<strong>in</strong>d<strong>in</strong>g on UK departments <strong>and</strong> theiragencies, unless M<strong>in</strong>isters conclude that exceptional circumstances requirea departureThe criteria should be reproduced <strong>in</strong> consultation documents, with an explanationof any departure, <strong>and</strong> confirmation that they have otherwise been followedHuman Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human Reproduction1. Tim<strong>in</strong>g of consultation should be built <strong>in</strong>to the plann<strong>in</strong>g process for a policy(<strong>in</strong>clud<strong>in</strong>g legislation) or service from the start, so that it has the best prospect ofimprov<strong>in</strong>g the proposals concerned, <strong>and</strong> so that sufficient time is left for it at eachstage2. It should be clear who is be<strong>in</strong>g consulted, about what questions, <strong>in</strong> what timescale<strong>and</strong> for what purpose323. A consultation document should be as simple <strong>and</strong> concise as possible. It should<strong>in</strong>clude a summary, <strong>in</strong> two pages at most, of the ma<strong>in</strong> questions it seeks views on.It should make it as easy as possible for readers to respond, make contact orcompla<strong>in</strong>4. Documents should be made widely available, with the fullest use of electronicmeans (though not to the exclusion of others), <strong>and</strong> effectively drawn to theattention of all <strong>in</strong>terested groups <strong>and</strong> <strong>in</strong>dividuals5. Sufficient time should be allowed for considered responses from all groups withan <strong>in</strong>terest. Twelve weeks should be the st<strong>and</strong>ard m<strong>in</strong>imum period for aconsultation6. Responses should be carefully <strong>and</strong> open-m<strong>in</strong>dedly analysed, <strong>and</strong> the results madewidely available, with an account of the views expressed, <strong>and</strong> reasons for decisionsf<strong>in</strong>ally taken7. Departments should monitor <strong>and</strong> evaluate consultations, designat<strong>in</strong>g aconsultation coord<strong>in</strong>ator who will ensure the lessons are dissem<strong>in</strong>ated”Compliance with the Consultation Criteria1. See paragraph 52. See paragraph 1003. See pages 3 <strong>and</strong> 4 <strong>and</strong> Appendix 34. See Appendix 35. See page 346. See paragraph 77. See Appendix 3Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionAppendix 3: Further Information/useful l<strong>in</strong>ksAdditional copies of this consultation document are available free of charge <strong>and</strong> can beobta<strong>in</strong>ed by contact<strong>in</strong>g:Vishnee SeenundunConsultation Co-ord<strong>in</strong>atorHFEAPaxton House30 Artillery LaneLondon E1 7LS.33telephone: 020 7377 5077email: adm<strong>in</strong>@hfea.gov.ukThe consultation document can also be downloaded from the HFEA website at:www.hfea.gov.ukIf you have any questions regard<strong>in</strong>g the content of this consultation, please contact PeterMills, HFEA Policy Manager (contact details as above).If you have any general questions regard<strong>in</strong>g this or any other HFEA consultation, pleasecontact Vishnee Seenundun, HFEA Consultation Co-ord<strong>in</strong>ator (contact details as above).If you have any compla<strong>in</strong>ts regard<strong>in</strong>g the consultation please contact Kerri Treston, HFEAConsultation Compla<strong>in</strong>ts Officer (contact details as above).Human Fertilisation <strong>and</strong> Embryology Authority
<strong>Sex</strong> Selection: Choice <strong>and</strong> Responsibility <strong>in</strong> Human ReproductionPart Seven: QuestionnaireThe consultation is open to any organisation or member of the public <strong>in</strong> the UnitedK<strong>in</strong>gdom. The consultation period will run for three months from October 22, 2002 toJanuary 22, 2003. All responses received before the clos<strong>in</strong>g date of January 22, 2003 will betaken <strong>in</strong>to consideration. Responses should be sent to:34Vishnee SeenundunConsultation Co-ord<strong>in</strong>atorHFEAPaxton House30 Artillery LaneLondon E1 7LSemail: adm<strong>in</strong>@hfea.gov.ukWe welcome as much <strong>in</strong>formation as possible, <strong>and</strong> if there is <strong>in</strong>sufficient space on theenclosed form for your comments please cont<strong>in</strong>ue on a separate sheet of paper, <strong>in</strong>dicat<strong>in</strong>gto which question the <strong>in</strong>formation you are provid<strong>in</strong>g relates. The HFEA would be pleasedto receive submissions <strong>in</strong> any form, but it would be helpful, should you choose to submit<strong>in</strong>formation <strong>in</strong> an <strong>in</strong>dependent form, if you would also tick the relevant boxes on thequestionnaire.To allow a more detailed analysis of the <strong>in</strong>formation we receive it would be helpful if youcould also <strong>in</strong>dicate whether you have a professional or organisational <strong>in</strong>terest <strong>in</strong> the issuesdiscussed <strong>and</strong> are reply<strong>in</strong>g on behalf of an organisation.F<strong>in</strong>ally, please do not forget to <strong>in</strong>clude your full name <strong>and</strong> the name of your organisationwhere applicable, <strong>and</strong> to <strong>in</strong>dicate whether the <strong>in</strong>formation you have provided may bemade public. In l<strong>in</strong>e with the Cab<strong>in</strong>et Office Code of Practice on Written Consultationresponses to this consultation may be made public unless confidentiality is specificallyrequested.Human Fertilisation <strong>and</strong> Embryology Authority
HFEA SEX SELECTION CONSULTATION: QUESTIONNAIREName:Organisation (if applicable):PAGE 1Address:Position of person respond<strong>in</strong>g <strong>in</strong> organisation (if applicable):Do you agree to the HFEA mak<strong>in</strong>g your response publiclyavailable?AgreeDisagreeThose respond<strong>in</strong>g on behalf of an organisation:Which of the follow<strong>in</strong>g categories most closely describes thenature of your organisation?Cl<strong>in</strong>ical/scientificConsumerReligious <strong>and</strong> faithOther (please specify)Bioethical/social scienceDisabilityPro lifeThose respond<strong>in</strong>g as private <strong>in</strong>dividuals (optional):Which of the follow<strong>in</strong>g categories most closely describes thereason for your <strong>in</strong>terest <strong>in</strong> the issues raised <strong>in</strong> thisconsultation?Cl<strong>in</strong>ical/scientificOther (please specify)Patient/consumer✃Please cont<strong>in</strong>ue to page 2 >
Please respond by plac<strong>in</strong>g a tick <strong>in</strong> one box for each question below.Regulation of Sperm Sort<strong>in</strong>g (questions 1 <strong>and</strong> 2)PAGE 21. Sperm sort<strong>in</strong>g should be regulated <strong>in</strong> the United K<strong>in</strong>gdom by the HFEA.AgreeDisagreeReasons:2. The use of sperm sort<strong>in</strong>g should be permitted only when its reliability <strong>and</strong> absence ofrisk to health have been satisfactorily established.AgreeDisagreeReasons:Uses of sperm sort<strong>in</strong>g <strong>and</strong> PGD (questions 3 to 6)3. The use of sperm sort<strong>in</strong>g should be permitted <strong>in</strong> sex <strong>selection</strong> for medical reasons if thepeople seek<strong>in</strong>g treatment request it.AgreeDisagreeReasons:4. The use of sperm sort<strong>in</strong>g should be permitted <strong>in</strong> sex <strong>selection</strong> for non-medical reasons.AgreeDisagreeReasons:✃
5. The use of preimplantation genetic diagnosis (PGD) should be permitted for select<strong>in</strong>g thesex of offspr<strong>in</strong>g for non-medical reasons. (It is already available for medical reasons).AgreeDisagreeReasons:PAGE 36. It would be preferable to comb<strong>in</strong>e sperm sort<strong>in</strong>g with preimplantation genetic diagnosis(PGD) when select<strong>in</strong>g the sex of offspr<strong>in</strong>g for medical reasons (rather than us<strong>in</strong>g eithertechnique s<strong>in</strong>gly).AgreeDisagreeReasons:Criteria for non-medical uses of sex <strong>selection</strong> (questions 7 <strong>and</strong> 8)7. <strong>Sex</strong> <strong>selection</strong> (by either sperm sort<strong>in</strong>g or PGD) should be permitted for non-medicalreasons when a family has at least two children of one sex <strong>and</strong> none of the other sex.AgreeDisagreeReasons:8. <strong>Sex</strong> <strong>selection</strong> (by either sperm sort<strong>in</strong>g or PGD) should be permitted for non-medicalreasons other than family balanc<strong>in</strong>g.AgreeDisagreeReasons:Please send all three pages of your responses by January 22, 2003, to:Vishnee Seenundun, Consultation Co-ord<strong>in</strong>atorHFEA, Paxton House, 30 Artillery Lane, London E1 7LS✃Thank you for participat<strong>in</strong>g <strong>in</strong> this consultation.