On 16 July, Progress Educational Trust (PET) held a highly successful debate in London, deliberating the role of parents and parliament in the decision-making process for the use of PGD. Describing the procedure as a 'disruptive technology', John Wyatt, Professor of Neonatal Paediatrics at University College London, argued for an active role for state regulation in a process for which decisions should not be marginalised into a private sphere. Arguing for an enhanced role of parental involvement in decision-making, Ann Furedi, Chief Executive of the British Pregnancy Advisory Service (bpas), advocated a 'light-touch' regulatory regime which allows for a continuing emphasis on decisions made by parents in union with doctors. The debate - which also featured Alison Lashwood of the Clinical Genetics Department at Guy's Hospital explaining the practicalities of PGD - was then opened up to the audience, who embraced a wide-ranging debate over the issues arising. By the end of the evening, a preponderant consensus had emerged: the role of parents in deciding upon the use of PGD should remain pre-eminent.
Despite such a consensus being rounded upon by a packed debating hall, this emphasis has fallen by the wayside in the recently published Human Tissue and Embryos (draft) Bill. A clear role is outlined in the draft Bill for the new Regulating Authority for Tissue and Embryos (RATE). In licensing PGD, the Authority must be satisfied that the condition screened for will result in a serious medical or mental disability or illness, taking into account the extent to which the genetic condition involves intellectual, physical, emotional or psychological impairment, amongst other factors, whilst the role of parents in the decision making process goes unmentioned. In contrast, the current guidance issued by the Human Fertilisation and Embryology Authority (HFEA) explicitly states that decisions around the use of PGD must take into account the parent's views. Consequently those favouring an enhanced role of parental involvement are met with a two-fold concern; not only is the Authority given what appears to be a overriding power of veto as against the wishes of parents, but they are due to make decisions under a framework which retains 'seriousness' as a threshold for offering treatment.
The suitability of an objective assessment of 'seriousness' is highly dubious within the remit of a procedure which is inherently subjective in its application. One member of the audience spoke of her two sons' diagnoses of Fragile X Syndrome, a hereditary condition whose symptoms can range from learning disabilities to more severe cognitive or intellectual disabilities, often accompanied by very challenging behaviour. While Fragile X Syndrome is not fatal, it can nevertheless be perceived as serious by families coping with the condition. The same opinion would undoubtedly be held by the couple recently granted the first license to use PGD to screen out embryos carrying a BRCA1 gene mutation, which indicates a 60-80 per cent risk of breast cancer (1,2). Carriers of a BRCA1 gene mutation - even where onset never materialises - must live with the sword of Damocles swinging above their head, a psychological strain which many would perceive as serious enough. However, with no legal requirement that RATE considers the views of those seeking treatment, it cannot be guaranteed that the seriousness test will always be applied in a way that reflects the parents' concerns.
Moreover, it is dubious whether the criterion of 'seriousness' is appropriate at all. Too often, overly emotive and unconstructive arguments, like those offered by David King in his recent BioNews commentary (3), use the concept of a 'worthwhile life' to substantiate an ethical platform for disallowing PGD. While it cannot be doubted that someone born with a hereditary susceptibility to cancer will lead a worthwhile life, an emphasis on seriousness as a criterion for allowing selection of only the most debilitating and penetrant of conditions fails to recognise the ethos of medicine: that prevention is better than cure, and that maximised health is desired as the keystone for living a flourishing and fulfilled life. Accordingly, I believe that we should extend the use of PGD further such that its potential for the maximisation of health and minimisation of suffering can be utilised by parents, who should be imposed with a duty of beneficence, where there is either actual or constructive knowledge of a genetic defect which could be inherited. Consequently, while only the most severe of genetic conditions could be said to create a 'worthless life', the future child is nevertheless owed a duty by which the most positive outcome is chosen by its parents.
That is not to say that a line should not be cast through regulation; it is clear that PGD should not be utilised to positively select a disabling genetic trait, something which the draft Bill prohibits (4), nor to make a selection on the basis of trivial non-medical reasons such as sex or eye colour. However, as many at the debate stressed, the complex realities and low prospects of a successful PGD pregnancy render it highly unlikely that parents would undergo the procedure for anything short of medical necessity. Nevertheless, beyond a boundary of medical and non-medical need, I believe it is not for the State to maintain the kind of involvement currently proposed in the draft Bill. To do so is an unjust infringement on decisions which can only benefit a society consequently spared of the costs and suffering associated with genetically inherited disease. At the very least, the State's role should be concerned to make sufficient resources available such that the duty of beneficence can be fulfilled. At the very most, as Ann Furedi concluded, broad principles will make the best laws, while the actual crux of the decision should be left for the parents in doing what parents do best: conceiving and nurturing the healthiest child possible.
Sources and References
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4) Department of Health, Review of the Human Fertilisation and Embryology Act (December 2006). Para. 2.43 provides: 'Deliberately screening-in a disease or disorder will be prohibited'.
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1) 'Breast cancer screen for embryos'
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2) 'Couple's embryos to be screened for gene that causes breast cancer'
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3) David King, 'Preimplantation Genetic Diagnosis and 'slippery slopes',
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