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.
Is the decision not to completely rule out the use of affected donors reasonable?
Yes, the decision not to completely rule out the use of affected donors is reasonable. To begin with, 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 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.
The real situation currently faced by providers of fertility services is not some imaginary desire on the part of fertility patients to inflict debilitating conditions upon their offspring, but rather a complex and contingent range of patient views regarding which disorders are 'serious'. As experienced genetic counsellors know, there can be a wide range of views about certain conditions - for example, deafness or extreme short stature - where a few people regard the condition as normal variation, others as a serious disability to be avoided at all costs, and others with views somewhere in between.
The view taken often depends on the patient's circumstances, and can change as the patient's circumstances change - for example, where their future offspring are at risk of another more serious genetic disorder, or if they need help with conception. Such situations need to be handled on a case-by case basis, under regulatory guidance from the HFEA and with due regard for the welfare of the future child, rather than being subject to an unhelpful blanket prohibition on using 'affected' donors.
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 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 is a sensible regulatory approach by the HFEA.
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.
One challenge that may face the HFEA in future - and that constitutes a further reason not to completely rule out the use of affected donors, although the HFEA may face this challenge nonetheless - 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.
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.
A further challenge that exists in this area, particularly given the HFEA's stated objective (in its consultation document entitled 'Improving Regulation') to remove duplication between different regulations and guidelines in the fertility sector, is the content of the UK Guidelines for the Medical and Laboratory Screening of Sperm, Egg and Embryo Donors that were prepared by the Association of Biomedical Andrologists, the Association of Clinical Embryologists, the British Andrology Society, the British Fertility Society and the Royal College of Obstetricians and Gynaecologists, and were published in the journal 'Human Fertility' in December 2008.
These guidelines, with their checklist approach to conditions that might render an individual unsuitable to be a donor, are difficult to reconcile with the provisions of the Human Fertilisation and Embryology Act 2008, with the HFEA's proposed new Code of Practice, or even (arguably) with existing common practice in this field. We point this out not because we wish the HFEA to take account of these existing guidelines in its new Code of Practice (which would be neither helpful nor practicable), but rather to alert the HFEA to confusion that might arise in future, from the simultaneous existence of these guidelines and the new Code of Practice.