Making Laws about making babies

The recent report from the Human Genetics Commission (HGC) - the UK government's advisory body on genetics - 'Making Babies: Reproductive decisions and genetic technologies' is the latest in a series of reports on the state of the law on assisted reproduction in the UK.

The House of Commons Science and Technology Select Committee - on which I serve - reported in March 2005 on 'Human Reproductive Technologies and the Law', considering some of the same questions as the HGC did. Since then, the Government has published a response to our report and has consulted publicly on its review of the 1990 Human Fertilisation and Embryology (HFE) Act, which governs medically assisted reproduction and embryo research.

Altogether the HGC report was an excellent contribution to this discussion, as might be expected from the HGC, respected for its contributions to ethical matters in this area. Indeed for this reason, among others, the Select Committee argued for a stronger regulatory role for the HGC.

Having said that, the report makes a number of assertions which I believe are worth taking issue with. Chapter five deals with reproductive choice in assisted reproduction and the use of donor gametes. On the question of donor anonymity I believe this report is guilty of the same fallacy as other reports. It argues that 'as long as donors freely accept non-anonymity as a condition of donation, the interest of donor conceived people in finding information about the donor and the circumstances of their conception, should outweigh that of their parents in keeping such information from them'.

Leaving aside any evidence that there is actual benefit in being able to identify your genetic parent (about which it makes no comment), the report states that the harm that does exist would stem from late, unintended and/or unexpected disclosure of the fact of donor-conceived origins. This fails to address the key concern here of whether removal of anonymity may actually make parental concealment of children's donor-conceived status more likely. Although the HGC make recommendations for all kinds of research, that question is not one where they call for research.

We cannot be certain to what extent potentially excessive regulation of safer sources of gametes will drive people to use other sources. This may include fresh sperm accessed from the unlicensed providers based in the UK, operating over the internet. The report 'support[s] the Department of Health in its investigations of possible avenues for regulating commercial operations involving sperm donation which are currently outside the HFE Act'. How far the law can and should extend into these informal ways of obtaining sperm while maximising the quality and safety of the sperm available for recipients, is a question that the report noticeably fails to address, let alone answer.

The report also has an interesting section on 'reproductive tourism'. This is the - some would say loaded - term used for those seeking medical help in starting a family outside the UK. Patients may be seeking treatments that in the UK are unavailable, or as yet unlicensed; prohibitively expensive; with a untenable waiting list; or actively forbidden by the regulators (HFEA) or made unlawful by the HFE Act itself. Several UK fertility clinics currently have associated clinics abroad, to which they send UK patients for treatment. When the Science and Technology Select Committee looked at this, we concluded these patients did not deserve criminalisation.

On this point the HGC report goes astray, recommending the HFEA should 'explore ways in which clinics in the UK can be prevented from preparing or otherwise colluding with individuals intent on seeking treatments that are permissible abroad, but prohibited in the UK'. It seems that they would apply this to prohibited services such as gender selection for non-medical reasons or using anonymous gamete donation. Surely, there is a distinction to be made between dangerous activities, prohibited by properly-debated statute in this country (eg reproductive cloning), and these other kinds of treatments. And should the refusal to license treatment in the UK by the HFEA be weighted at the same level? To give one example, it took the HFEA years to refuse, consider, then permit the licensing of PGD solely for the purpose of tissue-typing to provide cord blood for a sick sibling. Some drug treatments are also not licensed in this country and in many areas of medicine, doctors (already heavily regulated) often send patients abroad to get them. Are we also to extend the principle to those cases?

It is ironic, given the tone of the HGC's proposal to prevent any medical preparation or guidance ('collusion') that UK clinics might offer to patients intending to travel abroad, to make no suggestion to penalise citizens from abroad seeking services in the UK that are prohibited in their own countries. This disproportionate, self-selecting 'regulation-creep' is one reason why the Select Committee argued strongly for a presumption against additional regulation.