This policy document is part of a response submitted by the Progress Educational Trust (PET) to the Human Fertilisation and Embryology Authority's Consultation on its 8th Code of Practice and Revised Consent Forms.
Do you think the proposed changes (the new HFEA guidance or revised consent forms) would have a disproportionate effect on any groups of people on the basis of their age, disability, ethnicity or race, religion, gender or sexual orientation?
Yes, some groups will be disproportionately affected
In 8.9 of the its proposed new Code of Practice, the HFEA has attempted to define 'supportive parenting' as 'a sustained commitment to the health, wellbeing and development of the child'. A requirement for 'supportive' parenting to be 'sustained' could preclude a patient who has a serious medical condition or terminal illness from accessing treatment. It would also involve an unachievable requirement to accurately foresee a patient's future. We would therefore strongly urge the HFEA to remove the word 'sustained' from this definition.
The sentence following the HFEA's definition of 'supportive parenting', which suggests that 'the centre may take account of wider family and social networks within which the child will be raised', should be removed from the Code of Practice altogether. Inclusion of this sentence may enable or even encourage discrimination against lesbian couples, single women, orphans and recent immigrants, who may not have a wider family or social network.
8.9 of the HFEA's proposed new Code of Practice concludes with the phrase 'may be at risk of significant harm or neglect'. This phrase is insufficiently precise, and could enable or even encourage the withholding of fertility services from patients for discriminatory reasons. We suggest that the phrase be replaced with 'may be at a serious risk of significant harm or neglect'.
10.4 of the HFEA's proposed new Code of Practice refers to 'the experience of the people seeking treatment' as a factor that should be taken into account when considering whether PGD is appropriate, with the word ' experience' replacing the word 'view' in the equivalent section of the existing Code of Practice. The most likely inference from this is that a patient needs to have undergone a distressing experience before PGD can be practiced - for example, terminations on the grounds of fetal abnormality, miscarriages caused as a result of the genetic defect, a certain number of family members who are afflicted, or successful completion of a workshop.
Confusingly, a contrary interpretation could also be placed upon the word 'experience' - a patient could be characterised as so distressed by a previous experience, that they lack the perspective necessary to make a proper decision. Either interpretation represents an unacceptably dim view of the patient's capacity to make decisions in light of their past.
A broader theme of the HFEA's proposed changes to its Code of Practice in relation to PGD is an apparent attempt to make decisions about PGD less subjective and more objective. This is misguided, because subjectivity is an inevitable part of deciding whether there is - in the words of the Human Fertilisation and Embryology Act 2008 - a 'significant risk' of a 'serious condition'. It is impossible to establish 'risk' without involving the patients themselves, so as to appreciate the burden that any given condition would have upon them.
To attempt to establish risk objectively, implying that there could be a definitive list of conditions 'serious' enough to warrant PGD, would attract inevitable opprobrium from those who have such conditions. They may see the inclusion of their condition on the list as pejorative, implying that they should have been screened out before birth. Conversely, others would take umbrage at the exclusion of their condition from the list, because they believe its debilitating consequences to be insufficiently recognised. It is easy to envisage patient groups actively lobbying or seeking judicial review from both perspectives, in order to have their condition added to or removed from such a list.
It appears self-evident to us that the prohibition on using affected donors or embryos, as reflected in the interpretations of mandatory requirements which follow 10.4 and 11.17 of the HFEA's proposed new Code of Practice, will have a disproportionate effect on disabled people. To state that certain donors or embryos known to entail certain risks must not be 'preferred' to others is discriminatory.
On this subject, it is necessary to point out that few - if any - users of reproductive services have any intention of inflicting debilitating conditions upon their offspring, and that therefore the problem of this occurring exists largely in the imaginations of certain commentators and authorities.
The Department of Health's original original Explanatory Notes to the Human Fertilisation and Embryology Bill justified the prohibition on use of affected donors by claiming that 'outside the UK, the positive selection of deaf donors in order deliberately to result in a deaf child has been reported'. This appears to be a reference to Sharon Duchesneau and Candy McCullough, a deaf American lesbian couple who in 2002 used donated sperm from a deaf family friend, with a view to ensuring that the subsequent baby would be deaf. They did this after first approaching a series of sperm banks seeking congenitally deaf donors, and being turned down by all of them.
The fact that such a desire to transmit a disorder is an incredibly rare occurrence, and the fact that the Department of Health had to look abroad for a precedent, suggest that this phenomenon has elicited disproportionate concern. The HFEA should not compound this disproportionate reaction in its new Code of Practice, but rather should interpret mandatory requirements with a sense of proportion.
In 2008, particular prominence was given in the media to a couple who supposedly wished to inflict a disability upon their offspring. This was the deaf couple Tomato Lichy and Paula Garfield, who had one deaf three-year-old daughter, and were considering trying to have another child - possibly using reproductive services to help them conceive, and to check for risk of serious disease. Since this couple did not consider deafness to be a serious disease, they did not wish to reject an embryo - as they believed new fertility legislation would compel them to - on the grounds that it was likely to be deaf.
In all of the extensive coverage that this couple's views elicited, many commentators formed and perpetuated the misconception that Lichy and Garfield wished to ensure in advance that a child of theirs would be deaf. This was not in fact the case. The couple's desire was that if an embryo of theirs transpired to be at risk of deafness, then they should not be compelled to reject it in favour of another. This stance may still fall afoul of the Human Fertilisation and Embryology Act 2008, and/or the HFEA's new Code of Practice, but it is a far cry from wishing to deliberately deafen one's child. So the most commonly cited example of people who wish to inflict a disability upon their offspring transpires to be false - the couple wished for no such thing.
That said, it is fair to point out that all of medicine is discriminatory in one sense, since the exercise of expert judgement involves discriminating between different factors to arrive at a decision. The question here is whether the prohibition on using affected donors or embryos involves undue discrimination against disabled people, or whether it involves legitimate medical discrimination in the non-pejorative sense of that word.
The key challenge that may face the HFEA in this area in future is growing recognition of the social model of disability. In essence, this is the notion that disability is a property of society's failure to meet the needs of individuals, rather than being a property of medical facts. Taken to its logical conclusion, this philosophy would preclude all exercise of medical judgement, since it would enable all medical judgement to be described as 'discrimination' in the pejorative sense.
Nonetheless, the social model of disability has been endorsed by the UK authorities. For example, the Single Equality Scheme 2007-2010 published in June 2007 lists 'disability' as one of 'the six strands of equality that provide the overarching framework for the Department of Health' (p6). The Department of Health states in this document that it 'uses the social model (as opposed to the medical model) of disability: ie, it is the barriers (physical, attitudinal) that society puts in the path of disabled people that prevents disabled people from living fuller lives, rather than any inherent factor'. The document goes on to state that 'this concept - which has gained wider credence due, in part, to equality legislation - is fundamental, for it informs subsequent strategy and policy decisions relating to health and social care' (p15).
Such (well-intentioned) attempts to incorporate the social model of disability into health policy may lead to problems for both the provision and the regulation of fertility services. The social model of disability tends to militate against the expression of any value judgement about disability, thus potentially impugning both regulatory and medical judgement. Any prohibition on the use of a certain type of donor could fall afoul of the social model of disability, on the grounds that it constitutes discrimination against that type of donor.
Ultimately, any specification that certain embryos known to be at certain risks must not be 'preferred' to others, as exists in the Human Fertilisation and Embryology Act 2008, is a recipe for future problems. This is because no embryo is perfect, not all risks are clear, different risks are acceptable to different people in different situations, and different things constitute problems to different people in different situations. The wording of the relevant statute is such that it is all but impossible to anticipate and mitigate every instance in which it might discriminate unduly against disabled people.
Given this unfortunate statutory situation, the qualification that the HFEA has included, at the end the interpretation of mandatory requirements which follows 10.4 of its proposed new Code of Practice - 'and there is at least one other embryo suitable for transfer that is not known to have those characteristics' - probably does as well as can be expected to avoid the most likely problems relating to discrimination.
Inasmuch as users of reproductive services may wish to choose an 'affected' donor, one likely reason for this - given the possibility that individuals with a particular condition, including disabled people, will have a social circle consisting predominantly of others with that same condition - is that the donor is known to them. This is an entirely legitimate motive for selecting a donor, even if the relationship between donor and recipient is more tenuous than that given by the HFEA as an example in Q9 above - 'an affected donor who is a genetic relative, perhaps a sibling, of the infertile partner'. For these reasons, prohibiting selection of a donor 'exclusively' because they are affected, as in the interpretation of mandatory requirements which follows 11.17 of the HFEA's proposed new Code of Practice, is a sensible regulatory approach.
The HFEA may come in for some criticism, on the grounds that this approach makes prohibition on using an affected donor contingent upon the patient's stated reasons for selecting a donor, and therefore can be easily circumvented. This point notwithstanding, we still believe that the HFEA's interpretation of mandatory requirements following 11.17 of its proposed new Code of Practice, is valid. A good faith assumption of the patient's motivation and honesty is the correct starting point for both fertility services and their regulation, and is the best way to reconcile the provisions of new fertility legislation with equitable provision of fertility services for all.