The regulation of pre-implantation genetic diagnosis
Response to the HFEA/ACGT consultation from the Campaign Against Human Genetic Engineering
March 2000
Summary
The Campaign Against Human Genetic Engineering believes that the prevention of the birth of disabled children is often driven by misinformation and prejudice. We would therefore question whether it is right to promote the availability of prenatal screening and PGD without first making a major effort to re-educate the public, including prospective parents, about disabled people's lives, and improving financial and other support for disabled people and their families. We believe that pressures to expand the use of PGD stem from existing eugenic tendencies in our society, and might potentially lead to a full-blown consumer eugenics. PGD has a far greater eugenic potential than prenatal genetic testing because the availability of multiple embryos creates an in-built imperative to select, and because no pregnancy has yet been established, there is much greater pressure to eliminate impairment. We believe that a consumer eugenics is a very real prospect: we should not be complacent and expect that either the complexity of genetic determination or the invasive nature of IVF will present permanent barriers to the widespread use of PGD.
Because we are so concerned about this threat, we feel that it is crucial that PGD be regulated with the utmost strictness. As a matter of public policy, we believe that PGD should not be encouraged until we have eliminated eugenic pressures in our society. PGD should be seen as a technology of last resort when all other options for parents have been excluded. Some members of our group believe that it would be better to simply ban PGD.
A key principle for the regulation of PGD is that PGD should be used for testing rather than screening. This would mean that it should not be used to test multiple genes, for genetic predispositions to complex diseases, or as a routine screening tool in IVF. We do not support the creation of lists of genetic disorders for which PGD may be offered. However, we believe that there needs to be greater control over doctor' activities than is currently the case with prenatal testing. The HFEA should closely monitor practice and prevent PGD being offered for non-fatal and less serious conditions. More importantly, IVF doctors should receive training in non-directive counselling and disability equality.
Doctors should only inform parents about affected embryos, and ignore the fact that an embryo is a carrier of genetic disease. PGD should not be offered to deaf couples for the purpose of selecting a deaf child, since it should only be offered for the purposes of avoiding fatal disease. However, we do not think that the Principle of the Welfare of the Child applies to the question of whether a child will suffer from genetic disease. This would constitute a prospective judgment of 'wrongful birth' and might be used to pressure parents into undergoing PGD.
1 Introduction
The Campaign Against Human Genetic Engineering (CAHGE) is a public interest group which focuses on various issues raised by human genetics research and its application. Although we are firmly opposed to human germline engineering and reproductive cloning, we recognise the benefits that may be obtained from some human genetics research, and therefore believe that it should be permitted provided there is necessary regulation in place. Such regulation should be based not only on safety grounds but on the social and ethical impacts of genetic technologies.
2 Why use PGD?
Before turning to the specifics of PGD, we wish to state our support for the arguments made by many disability rights activists, who feel that the drive to prevent the birth of children with genetic impairments is driven by misinformation about disabled people's lives. Often impairments are viewed by non-disabled people as a 'tragedy', and the view is often expressed that it would have been better if that person had never been born. Such attitudes often lead parents to opt for prenatal screening and abortion. However, disabled people, including some with severe impairments, do not feel that their lives are a tragedy, and are pleased to be alive. We believe that much of the pressure to medicalise and control reproduction stems from social prejudices against disabled people as well as lack of adequate support for families with disabled children. We fear that in a society where PGD was widespread, and it became common sense that this was the sensible way to avoid genetic disorders, these social forces would be strengthened and social tolerance of deviation from an increasingly narrowly defined norm would be reduced. We believe that there is a need for much greater public discussion of these issues. We would therefore question whether it is right to promote the availability of prenatal screening and PGD without first making a major effort to re-educate the public, including prospective parents, about disabled people's lives, and improving financial and other support for disabled people and their families.
3 The dangers of PGD
As a background to our comments on regulation, we will first of all outline our concerns about PGD. In our free market society PGD is a very dangerous technology. If widely applied, without regulation, it could lead to a radical expansion of existing tendencies towards eugenics in our society. In such a situation it is quite possible that social prejudices and market forces could create a 'positive' eugenics in which parents selected the 'best' from amongst multiple embryos, based upon their own choice of both health and non-health-related criteria (such as sex, appearance, aptitudes etc.). We are pleased that the HFEA thinks that it would not be acceptable to test for non-health-related characteristics. However, if PGD were not strictly regulated it would be impossible to maintain a clear distinction between pathological and non-pathological characteristics and market forces would rapidly lead to the use of PGD for such characteristics.
This will be bad enough in itself, but it would also be socially divisive since access to such technology would be easier for existing wealthy social elites. It is sometimes argued that since we permit parents to choose expensive private schools for their children they can be no objection to allowing market forces to determine the genetic make-up of future generations. This is an unacceptable argument, since it suggests that the existence of one social problem is an excuse for creating a worse one. Furthermore, giving children genetic advantages is qualitatively different from giving them environmental advantages; it is not just 'more of the same'. If PGD were to become widely used to select many of the characteristics of a child, this would encourage existing tendencies to view babies as (customised) consumer products. We believe that this is a profoundly wrong and harmful attitude which would damage relationships between parents and children by reducing children to the status of designed artefacts.
There are two common objections to the scenario which we have just sketched. The first, which the HFEA mentions at paragraph 22, is that for most common medical conditions (as opposed to single-gene disorders) and non-health-related characteristics, genetic determination is complex and environmental determination is at least as important. While this is true it should not lead to complacency. Firstly, it is very possible that a major fraction of the genetic predisposition to common diseases and characteristics is due to less than 10 genes. In fact there are already examples in the scientific literature of genes that are claimed to have an important effect on hair colour, height and athletic ability. It is already possible to test for hundreds of different genetic variations and one time using gene chips. Secondly, in the context of PGD, where parents are selecting amongst multiple embryos, parents may nonetheless demand the genetic data, in order to pick the embryos with the 'best' genetic profile, whilst accepting that genetic testing provides no guarantee or even very accurate prediction of outcome. The availability of multiple embryos creates an in-built imperative to select.
The second objection is that PGD is too invasive and demanding of women since it involves IVF. Again, this should not lead to complacency. It is very likely that in the next few years, the major user-unfriendly aspect of IVF, hormonal stimulation of ovaries, will be overcome through the in-vitro maturation of eggs from ovarian tissue. At that point the costs and rigours of IVF will be significantly reduced and the combination of IVF and PGD would become an attractive option for fertile couples concerns to secure the 'best genetic start in life' for their child. This is an example of one aspect of eugenics in our society: increasingly medicalisation of reproduction leading to increasing concern over quality control.
Under the current system of prenatal testing, such eugenic tendencies are restrained to some extent by an ethos of non-directive counselling and by the fact that the termination of pregnancy is traumatic and repeated pregnancies are difficult. Neither of these factors is present in PGD and in fact there are opposite tendencies which radically enhance the eugenic potential of PGD, compared to prenatal testing. We believe that the HFEA has not paid sufficient attention to these features of PGD in the consultation paper and has mistakenly assumed that the ethics of PGD are similar to those of prenatal testing (eg. paragraph 27).
In PGD, where no pregnancy has started and there are multiple embryos, outside the woman's body, there is an inherent bias against passing on genetic conditions and this extends even to questioning whether carrier embryos should be implanted (see below). In PGD the availability of surplus embryos creates a powerful imperative to select and choose between potential lives. Prenatal testing is hardly a selection technology in this sense, because eliminating the foetus leaves the mother with nothing.
Secondly, in prenatal testing, although it is often not the case in practice, the official policy of genetic counsellors is to give non-directive counselling, and to respect the woman's right to choose. By contrast IVF practitioners have no such ethos, or experience with non-directive counselling. These in-built structural features make the PGD situation very different from that of prenatal genetic testing.
In summary, we believe that pressures to expand the use of PGD stem from existing eugenic tendencies in our society, and might potentially lead to a full-blown consumer eugenics. This would directly harm the interests of disabled people and greatly damage society as well as the relations between parents and children. We believe that these are very real prospects and because we are so concerned about them we feel that it is crucial that PGD be regulated with the utmost strictness. As a matter of public policy, we believe that PGD should not be encouraged until we have eliminated eugenic pressures in our society. PGD should be seen as a technology of last resort when all other options for parents have been excluded. Some members of CAHGE believe that PGD should simply be banned.
4 Comments on the consultation paper
4.1 Testing not screening
A key principle of the regulation of PGD should be that PGD should only be offered when there is a known risk of genetic disease, (ie. when there is already an affected person in the family). PGD must not become a routine screening process for the reasons outlined above.
This principle would prohibit the use of PGD for testing multiple diseases and for testing genetic predisposition to common diseases. It would also rule out its routine use in IVF programmes. This latter point is extremely important, since once PGD became established as a multi-gene screening tool in IVF programmes, it would become impossible to justify restricting access to infertile women once IVF became more user-friendly.
4.2 Seriousness of disorder
CAHGE does not support the creation of fixed lists of conditions for which PGD should be offered, although if the rule of offering it only when there is a known history of disorder in the family is followed, this will effectively restrict its use to single gene disorders. We believe that it is impossible and counter-productive to create fixed rules.
However, we are not impressed with the existing levels of control over prenatal testing, and are very concerned that it is being offered for certain trivial and even cosmetic conditions such as cleft lip. Since the eugenic potential of PGD is greater than that of prenatal testing, it is even more important that strict control is maintained. We therefore recommend that the HFEA write a set of guidelines which emphasise the need to restrict the use of PGD as much as possible. In particular PGD should only be offered for fatal conditions. The HFEA should monitor the conditions that clinics are offering PGD for, and if it appears that there is a trend towards its use for less serious conditions, the HFEA should order the clinics concerned to stick to the guidelines.
More important than guidelines are efforts to combat eugenic pressures. These measures should include (i) training of IVF doctors in non directive counselling and disability equality; (ii) giving parents access to accurate information directly from disabled people about the reality of living with the disorder in question. It is particularly important that the HFEA make it clear to clinics that the 'principle of the welfare of the child' should not be an excuse for coercing parents to take tests or make particular decisions (see below).
4.3 Carrier and affected embryos
4.3.1 Carrier embryos
The suggestion that carrier embryos should not be implanted is a prime example of the inbuilt eugenic bias in PGD. Here, the individual themselves would not be physically affected, yet there is still a pressure to eliminate such embryos. The justification offered for this, that the person might have to face certain reproductive session decisions when adult is completely inadequate. Such minor difficulties in life can hardly seriously be an excuse for de-selection of potential human beings unless there is a eugenic agenda to eliminate 'bad' genes from the gene pool.
However, because of the presence of non-carrier embryos there will naturally be a tendency for parents to remove carrier embryos. We propose that doctors only inform parents of the genetic status of the embryo when it will be affected by genetic disease. There are two precedents for this. The first is the practice of not informing parents about the sex of the foetus. The second is the 'couple testing' protocol in prenatal testing where couples are only informed if both are carriers.
4.2.3 Affected embryos
Since PGD should only be offered as an option of last resort, in cases of fatal disease, and not for reasons of selecting a child that conforms to parents desires or whims, we do not support its use for selecting a deaf child.
However, we are extremely concerned by the way that the consultation document introduces the principle of the welfare of child in this context. It is unnecessary to invoke the principle in order to rule out such occurrences -- parents will undertake PGD precisely for the purpose of avoiding genetic disorders and so are hardly likely to insist upon implantation of an affected embryo. The only situation in which this might arise his if they are very few embryos available, which would only be likely in cases of infertility. In such cases where implantation of an affected embryo is the woman's only chance of pregnancy, this should be allowed since the situation is an analogous to prenatal testing discovering a genetic disorder. The rigid application of a 'principle' in such cases would indicate that eugenic considerations were more important than a woman's desire and right to have a child.
If it is suggested that the principle constitutes a general moral imperative to avoid the birth of children with genetic impairments, this amounts to a prospective judgment of 'wrongful birth'. In the future, should PGD become more user-friendly, this would lead to doctors to put moral and other pressure on parents to undergo PGD. The HFEA should make it clear to doctors that their judgments about the interests of the child must not include the question of whether the child is born with disability. The principle must not become an excuse for establishing a presumption in favour of PGD.