Programme Director for MA Bioethics and Medical Law at St Mary's University, Twickenham Dr Trevor Stammers writes on his experiences debating HFEA's approval of gene-editing experiments by the Francis Crick Institute. Having done four BBC radio interviews debating the HFEA's decision to give the go- ahead for the Francis Crick Institute to carry out gene-editing experiments on healthy human embryos, I am still puzzled as to why the researchers chose to promote this work to the public as offering potential cures for miscarriage and improving birth rates for IVF above the current 25% level. {1} I am mystified because the HFEA report makes no mention of miscarriage in the title of the Crick’s research application. The word ‘miscarriage‘ does not occur in the entire 27 page HFEA approval document. [2} The report actually states that ’promoting advances in the treatment of infertility’ was added as ‘an additional purpose to the research license’, if not at the last minute, then certainly at a much later stage in the process of approval than the original application. This is odd since the treatment of miscarriage was the primary (and sometimes only) aim presented in the media to justify the research to the public. More often than not, miscarriage has nothing to do with the embryo at all and when it does it is something that is highly unlikely to be treatable by single gene editing, as such embryo abnormalities often involve entire chromosomes, or at least large sections of them, going wrong either during fertilization or the first few cell divisions thereafter and there is no obvious way in which the proposed experiments are likely to offer any solutions to that. In the first interview of the week, I asked Prof Robin Lovell Badge on the World at One if he could tell me how this proposed gene editing project might improve the treatment of miscarriage. He remarkably replied “…you don’t need the gene editing methods to cure infertility but it could benefit it”. The issue of how it might benefit it was not explained. Later the same day, I raised the same issue with Prof Julian Savulescu from Oxford who said that the debate was being derailed by the focus on miscarriage! Why then forefront it as the rationale for doing the experiments? Prof Savulescu’s focus was much more on the possibilities which this work, if successful, may open up in terms of genetic modification of humans for instance in reducing aggression. Indeed because the human genome is ‘not perfect’, he believes scientists (notwithstanding they themselves being end -products of imperfect genomes) have an ethical obligation to improve it. When I pointed out that some scientists in the military would want to increase the effect of the same putative ‘genes for aggression’, he implied it was being alarmist to introduce the prospect of ‘super soldiers’ in the context of this research. Well I did want to talk about miscarriage actually and would gladly have done so since we seem to be a long way from being able to treat this, let alone creating super soldiers which I believe stretches genetic determinism beyond what will ever prove possible. Finally at the end of the week on Sunday Sequence on BBC Radio Ulster, I raised the issue of miscarriage with Prof Darren Griffin from the University of Kent. Although that discussion was certainly livelier than previous interviews in the week, I still had no clear answer as to what benefits the Francis Crick Institute research is likely to gain in terms of reducing miscarriage rates. However given that Prof Griffin is an expert on aneuploidy – chromosomal abnormalities giving rise to miscarriage - I have since found out that there are genes controlling the mechanisms of aneuploidy which may possibly mean that the Crick experiments could be of relevance. However experts in other countries are obviously not at all convinced that any clinical applications are going to arise. Arguably the other most well -known living geneticist in the world besides Crick , is Francis Collins, Director of the US National Institutes of Health and the Human Genome Project. He recently stated that one of the reasons- besides several major safety concerns- why the US had not approved the kind of research that HFEA has given the green light, is because of “a current lack of compelling medical applications justifying the use of CRISPR/Cas9 in embryos”. [3] The pain of infertility is immense and ethical, evidence-based means to enhance its successful management are to be welcomed. But promises of improved treatments for infertility and miscarriage from experiments primarily designed for other purposes are both harmful to patients and damage the reputation of scientific endeavor in which the fully informed consent of those donating their embryos is essential. If couples are led to think they are contributing to advances in miscarriage management they are in my view also being led up the garden path.
- http://www.hfea.gov.uk/docs/HFEA_Fertility_Trends_and_Figures_2013.pdf
- http://guide.hfea.gov.uk/guide/ShowPDF.aspx?ID=5966
- http://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-nih-funding-research-using-gene-editing-technologies-human-embryos
Dr Trevor G Stammers BSc, MA, FRCGP, DRCOG, FHEA, Dip Psych. Editor, The New Bioethics Programme Director in Bioethics and Medical Law, St Mary's University, Waldegrave Road, Twickenham, TW1 4SX