Amendments proposed last year in a review of the 1990 Human Fertilisation and Embryology Act contain a new provision in relation to fertility treatment that has offended members of the deaf community and raises important questions about government policies on embryo selection and serious disability. The controversy is centered on a new licensing condition proposed in clause 14(4) of the Human Fertilisation and Embryology Bill that would prohibit the selection of a ‘disabled’ embryo when a normal one is available. Embryos known to have a genetic abnormality (including a gender-related abnormality) that places them at ‘significant risk’ of ‘serious disability or illness’ are not to be preferred over those that are not known to have the abnormality. The same prohibition extends to the preference of persons with a genetic condition who might act as donors of gametes or embryos. The express intention of the clause, indicated in both the explanatory notes and proceedings in the House of Lords, was to prevent situations similar to those reported elsewhere in which deliberate attempts had been made to produce a deaf child through positive selection of embryos or donors.
The ensuing legal and ethical debate is far from theoretical for the deaf couple who wish to share their experience with a deaf child rather than a hearing one. Tomato Lichy and his partner Paula Garfield view their deafness as membership in a linguistic minority, rather than a serious disability, and attempts to prevent them from choosing a deaf child as discrimination violating their rights to equality and privacy. This view is opposed by members of the medical community, who have serious concerns about permitting the deliberate selection of deaf babies. Professor Peter Braude, director of the Assisted Conception Unit at Guy’s and St Thomas’ Hospital in London is quoted as saying that “This is the same as taking a normal child and deliberately making it deaf so that it can fit in with a community. I don’t see how that can be acceptable” (see Telegraph article). Neither is it a view that is accepted by some of those who campaign on behalf of the unhearing. The Royal National Institute for Deaf People (RNID) does not support the choice of deaf embryos over those who would not be born with hearing problems. Chief executive Jackie Ballard says that “No one should be forced into having genetic testing if they don't want it. But if they do, we would want the embryos without the gene to be implanted” (see BBC news).
Nevertheless, the outcry and media coverage has elicited a response from the Department of Health, which has reportedly agreed to drop any reference to deafness as a serious medical condition. The concession does not extend to removal of the general prohibition against preference of embryos with genetic conditions, but it could pave the way for a challenge in the House of Commons later this year as to whether deafness should be classed as a serious medical condition for the purposes of the Bill. If successful, amendment of the Bill might permit parents undergoing IVF treatment to choose an embryo that will develop into a deaf child.
14 Conditions of licences for treatment
(1) Section 13 of the 1990 Act (conditions of licences for treatment) is amended in accordance with subsections (2) to (4).
…
(4) After subsection (7) insert:
(8) Subsections (9) and (10) apply in determining any of the following:
(a) the persons who are to provide gametes for use in pursuance of the licence in a case where consent is required under paragraph 5 of Schedule 3 for the use in question;
(b) the woman from whom an embryo is to be taken for use in pursuance of the licence, in a case where her consent is required under paragraph 7 of Schedule 3 for the use of the embryo;
(c) which of two or more embryos to place in a woman.
(9) Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,
must not be preferred to those that are not known to have such an abnormality.”
Clause 14(4) of the Bill (above) effectively means that a person with a genetic condition, at significant risk of serious illness or disability, may not donate eggs or sperm for IVF treatment if there is an existing donor without such a condition. It also means that an embryo with a genetic abnormality posing a significant risk of serious illness or disability must not be implanted if there is one available that does not, or is not known to, have the abnormality.
The case raises a number of legal and social questions about perceptions of disability and the parameters of reproductive choice. The ‘medical model’ of disability employed in the Act has been blamed by supporters of the deaf community for undervaluing people with genetic conditions, their contributions to society, and – in the case of the deaf couple – their unique language and culture. It is true that the choice PGD offers to parents is one based on purely medical criteria – while each embryo is equally valuable in human terms. It is also true that the objective of PGD is to provide families with a means of choosing to avoid hardships associated with serious physical limitations - and that parents are not obliged to have their embryos diagnosed prior to implantation. At the point at which the in vitro fertilization has taken place and diagnosis obtained, however, a crucial decision must be made. The decision is not about whether an unhearing child would be better off with hearing. It is about which of the embryos, each legitimate offspring of a couple, will be nurtured and raised, and which will perish. The decision involves an element of discretion that the government is apparently not content to leave entirely to the parents, and which the parents might justifiably consider their personal prerogative.
The legislation currently places some controls on the use of PGD, limiting the genetic characteristics that may be tested for, and thus the information upon which the selection is to be based. These parameters are not presently in question, but within them there is an issue over the right to make the actual selection. The legislation and the goal of medical intervention by PGD are based on a presumption, reiterated in clause 14(4), that the interests of the public are best served by avoidance of genetic abnormality and physical impairment, and propose to prevent any other result. The values that suffuse this presumption are a cause of concern for Tomato and Paula, who argue that their preferences should not be legislated and that the government should not be arbiters of their family life.
Various arguments are being flung about in the debate as to the right of disabled parents to choose children like themselves. The right to privacy in such intimate matters, the right to family life and the right to equality as well as non-discrimination are being hailed. The public interests against which such individual rights must be balanced, apart from overarching public health questions and economic considerations, are not self-evident. There is unlikely to be a floodgates problem of people seeking to use PGD in this way. Still, the government may be committed in principle to a prohibition of deliberate preference of disabilities, and refocus the debate on whether deafness is outside of the scope of ‘serious disability’ or ‘serious medical condition’. The absence of definitions in the Bill is perhaps by design, providing a degree of flexibility to permit interpretative application in individual cases. Where however ambiguity is informed by a contextual understanding of the intention of the legislators - in this case the accompanying explanation that deafness was being targeted – the legislative interpretation must take it into account. By removing this reference the notes should have less (prejudicial) relevance for the interpretation of ‘serious disability’ in the context of individual PGD assessments involving deafness.
Given the current limitations of the treatment - the prevalence of IVF births is just 1% and PGD has a low success rate and high cost - one has to question the need for any change in the level of regulatory scrutiny regarding preferences in the selection process. While Tomato and Paula remain the exception to the rule, the case-by-case method for addressing such decisions may continue to be the most appropriate way of handling them.
