Human Fertilisation and Embryology Authority Consultation

As explained in the December 2005 Newsletter, the Institute’s Council decided that the Institute should make a contribution to the HFEA’s consultation exercise on Pre-implantation Genetic Diagnosis entitled “Choices and Boundaries”. Member were invited to inform Council of their views so that they could be reflected in our response but none did so. Council delegated the task of producing a response to a small working party and in the event the work was undertaken by just two members of Council. The full response is reproduced below.

Choices and Boundaries

Human Fertilisation and Embryology Authority

21 Bloomsbury Street

London WC1B 3HF

9^th January, 2006

Dear Sir/Madam,

Re: Choices and Boundaries

This letter presents the views of two Council members of The Galton Institute (founded in 1907) and may not reflect the opinions of our general membership.

In reply to your six questions:

1. We entirely accept the use of PGD for the identification of embryos carrying serious monogenic defects producing such disease as cystic fibrosis, Duchenne muscular dystrophy, Tay Sachs etc.

2. The inherited cancers under some conditions can be highly penetrant (e.g. the BRCA mutations in Ashkenazi Jews) and so would constitute serious genetic disease. Since the symptoms of disseminated breast cancer are so unpleasant with serious consequences for their families, PGD should be available if requested.

3. We would not arbitrarily state any particular penetrance level below which no further action should be taken. It very much depends on the particular disease and the family perception of it.

4. We believe that the views of people seeking treatment should be of paramount importance. Their request could be assessed by a doctor and geneticist who act according to a professional code of ethics (as formulated by the BMA or GMC). The ethical concerns of the wider society are of much lesser importance due to the widely differing social norms that prevail in a multicultural society such as the UK.

5. PGD as a technique is quite different from pre-natal diagnosis; and since it does not require a termination of pregnancy is less controversial and could be more widely available.

6. We believe the primary role of the HFEA is to promote legislation that protects the public from harmful procedures and prevents commercial exploitation by Industry. To legislate for the use of these procedures (once established as safe) can be quite inappropriate (e.g. the case of Blood v. HFEA illustrates the lengthy and costly court cases that can arise from such legislation without altering the final desired outcome for Mrs. Blood). We believe the subject is better regulated by doctors and geneticists according to their professional code of ethics where each family request is assessed on a case-by-case basis as is usual for clinical care. The reasons why we consider so much of the current legislation to be ineffective are:

1. The rapid pace of genetic discoveries and emerging technologies that outstrip the pace of legislative procedures.

2. The diversity of opinions and applications in a pluralistic society means that blanket rules are difficult to apply.

3. The evolving social norms and expectations of a variously educated public leads to the law appearing out of date for many sections of society and thus confidence and respect for it is lost.

A more flexible regulatory model that is retroactive rather than a prospective criminal or prohibitive approach may be more desirable in the long run. In the former case the actual situation would determine the ethical choices to be made, as is usual in clinical practice.

We hope you find these comments helpful.

Yours sincerely

David Galton and Robert Peel