The Human Fertilisation and Embryology Authority (HFEA) have begun a consultation into a potential revision of the Human Fertilisation and Embryology Act 1990. This ends in just three weeks, and involves recommendations that are extreme and in many cases highly unethical.
The consultation proposals mark in their initiation and content an act of directive advocacy which goes far beyond the remit of an organisation which is meant to serve Government as a regulatory ‘quango’. If implemented, and amongst other things, they would:
Radically deregulate human embryo research, by:
- amending the HFE Act so that it no longer focuses on the special status of the human embryo, the interests of children born through IVF, or the maintenance of public trust;
- ‘future-proofing’ the HFE Act by:
- abolishing the ‘14 day rule’, which would allow permitting experimentation on human embryos or foetuses outside the womb without time limit) – this would legalise potential experimentation on unborn children outside the womb up to viability, or on human-primate hybrids up to viability, without full parliamentary scrutiny, and without even the informed consent of the biological parents;
- permitting ‘germline genome editing’ for reproduction (i.e. ‘genetically-modified babies’), subject only to secondary legislation.
Undermine patient informed consent for medical procedures, by:
- moving to presumed consent (‘opt-out’) model for treatment;
- allowing consent for embryo donation to be for generic research (removing limits on research using embryos for which consent is currently necessary).
Dramatically expand the purview and increase the powers of the HFEA, by giving it:
- freedom from the requirement to make site visits on fertility treatment facilities or experimental laboratories every two years;
- new powers over ethical fertility services that do not involve in-vitro fertilisation;
- discretionary powers to indefinitely extend licences (for clinics to provide fertility treatments, store eggs, sperm, and embryos, and carry out embryo experiments);
- powers to licence experimental treatments which have no proven benefit.
Whilst two positive recommendations were included on sharing medical information (with donor-conceived offspring and with healthcare providers in certain contexts), even these good proposals are weaker than they might be and all could be achieved without the radical revision of the HFE Act for which the HFEA is otherwise pushing.
A revision of the Act would also be a major distraction for the Department of Health and Social Care at a time when it needs to focus on the aftermath of the pandemic, on the massive increase in waiting times for routine procedures, and on the crisis in social care provision.
To not state the strongest disagreement with these proposals, would be to tacitly accept them, and affirm the removal of important protections not just for adult patients for medical and scientific coercion and malpractice, but for unborn human beings against destructive and exploitative experiments.
The consultation is framed to discourage, as far as possible, participation from the wider public. In the interests of democratic debate, and the common good, it is imperative that as many people as possible respond to the HFEA, and that civil society is informed about the extreme and potentially harmful implications of their proposals.
To enable this, the Anscombe Centre has produced a briefing on the consultation which includes our recommendations and advice as to how to submit to it.
Professor David Albert Jones, Director of the Anscombe Bioethics Centre, said:
“The United Kingdom has an ignominious history of support for eugenics and unethical experimentation on human embryos, including generating embryos with human and nonhuman genes. Now the HFEA, which is supposed to place ethical restrictions on research, is proposing to allow regulations for such experiments to be permitted without any developmental time limit. We urge anyone concerned about these proposals to respond to the HFEA consultation and to express their views in the strongest possible terms”.
