‘The HFEA has run its course, but we need a new body to protect the embryo’
Many will welcome the government’s decision to abolish the Human Fertilisation and Embryology Authority. It will be welcomed by clinics that thought it unnecessarily restricted their activities and by pro-life groups, which were excluded from HFEA membership and which felt that it regulated activities that should never have been undertaken.
For six years, from 1997 to 2003, I served on the authority and chaired its ethics and law committee. It was a steep learning curve and there was a daily struggle to keep moral reflection up to date with scientific development and the desire of medical and commercial enterprises to use what science was making possible. In a number of areas that are morally crucial, we were able to hold the line. For example, we were able to maintain the prohibition on the production of embryos only for research. We permitted selection of embryos through pre-implantation genetic diagnosis only when an existing child had a heritable, life-threatening condition and any subsequent child was at risk.
I am sorry that the HFEA became increasingly libertarian in its decisions. It ruled in favour of producing embryos purely for research through what was euphemistically called “therapeutic cloning”. Such embryos, within a prescribed time-limit, could be used to extract stem cells for research on how these cells could be used to treat a variety of diseases. It has always been a surprise to me why such high priority should be given to embryonic stem cells when most effective treatments have been derived from adult cells which have been re-programmed to behave in a “pluripotent” way. The HFEA not only allowed preimplantation genetic diagnosis (PGD) to produce “saviour siblings”, even when there was no danger of life-threatening heritable disease, but, controversially, it permitted the creation of so-called “cybrid” embryos, which involve the use of an animal egg from which the nucleus has been removed and replaced with the nucleus of a human cell.
Before we celebrate its demise, we need to ask why the HFEA was created in the first place. It was created so that the special status of the embryo could be recognised. It was acknowledged that the embryo had all the genetic material needed for a human being and could not, therefore, be treated like any other tissue (for which there is another authority). This deliberately left open the question as to whether there was already a human being present. Even if we take a developmental view of how personhood emerges, the precautionary principle requires us to treat the embryo with respect at all stages precisely because we do not know when we are dealing with a human being.
Respect for the embryo, although in a reduced sense, has been eroded steadily either because of decisions made by the HFEA or by changes in legislation. The question arises, nevertheless, as to how the special status of the embryo will continue to be recognised in law and regulated in practice. There remain many important issues that have to do not only with the status and treatment of the embryo, but with the welfare of any children born as a result of fertility treatment. Whatever we may think of such treatment, the reality is that IVF is here now and it needs to be strictly regulated.
One possibility may be to create a body along the lines of the American President’s Commission on Bioethics. Its remit would be wider than that of the HFEA and it would have a membership that was comprehensive and independent. It would have a deliberative as well as a regulative function. One of the problems with the HFEA was that the pressure for inspections and regulations squeezed out the opportunity for serious reflection on the moral issues confronting our age. This could sometimes lead to the authority taking the line of least resistance. If such a new commission is to be created, there should be a wide-ranging public discussion about its terms of reference, its membership, its relationship to parliament and government and whether it will be advisory or statutory. It should not be necessary to create a vast bureaucracy to run it. A number of existing organisations of all shades of opinion as well as volunteers with expertise could assist in its operation.
Such a commission would continue to offer advice on the moral status of the embryo and on the strict limits there should be on what can be done with it. It would be concerned with the need that people have for knowing their complete genetic inheritance (this, by the way, is one reason for the importance of the biologically-related family). It would engage with the demonstrable need that children have for both their parents and how parents can play a complementary role in the upbringing of their children.
There are also serious moral issues about the storage of eggs and of embryos and how they are to be used. If embryonic stem cells become important for treatment, the emergence of banks for umbilical cord-blood will become a morally acceptable way of using such stem cells, particularly if it is to benefit the donors themselves or their near-relatives. IVF outcomes will need continuing monitoring as will the welfare of any children born in this way. New technology will have to be considered not only for its moral acceptability but also its practicality and affordability. Researchers and practitioners will have to be held to account. The work of the Human Genetic Commission could also be brought within the remit of such an extended commission.
It may be that the HFEA has run its course but the moral and social issues which brought it into being have not gone away. They are still with us and, arguably, in a sharper form. We need a body which will not only monitor and regulate but will be able to provide moral direction in areas that are sometimes uncharted.
I understand that the Government is considering allowing some advisory mechanisms, along the lines of the HFEA’s Ethics and Law Committee, as a way of ensuring that the ethical aspects of treatment and research are given the attention they deserve. If so, this is not so far from the kind of commission I am proposing. Such a body would need to be independent and well-respected if it is to carry any clout. It must also balance the interests of the stake-holders, fertility clinics, medical practitioners and scientific researchers, with those of the general public.
Apart from scientists, philosophers and theologians, it is of crucial importance that wider society should be represented on such a body.