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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 to not completely rule out the use of affected embryos appropriate?

Yes, the decision not to completely rule out the use of affected embryos is appropriate. 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.

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.

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' embryos.

In addition to differing patient views of what constitutes a 'serious' condition, there may also be biomedical limits to the reliable prediction of a prospective condition's seriousness. Even with disorders inherited in a regular Mendelian fashion, the degree of disability can vary between family members carrying the same genetic abnormality (mutation). This means that an embryo with the mutation has less than a 100% probability of the most serious manifestations. The Human Fertilisation and Embryology Act 2008 recognises this, using the phrase 'gene, chromosome or mitochondrial abnormality involving a significant risk that the person with the abnormality will develop a serious medical condition'.

If the significance of the 'risk that the person with the abnormality will develop a serious medical condition' cannot be precisely established, but rather is a matter of expert decisions in a specific set of circumstances, then even a blanket prohibition on using 'affected' embryos would have to depend for its enforcement upon the application of clinical judgement. Since clinical judgement is an inevitable component of decisions about 'affected' embryos, it seems both logical and consistent for the Code of Practice to provide the greatest latitude permitted by statute for the exercise of such judgement.

One challenge that may face the HFEA in future - and that constitutes a further reason not to completely rule out the use of affected embryos, 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 embryo could fall afoul of the social model of disability, on the grounds that it constitutes discrimination against that type of embryo.

Ultimately, the fact of the matter is that any specification that certain embryos known to be at certain risks must not be 'preferred' to others 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 clinical scenario where it could prove problematic. 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 capture the most likely clinical scenarios.