Yves Moreau

We are glad to know that the authors would welcome an open scientific discussion on the merits of PGT-P, and we would hope this would, at the same time, include addressing the relevant ethical issues, such as ramping up false expectations as to what can be achieved through the application of unevaluated new technologies, which might lead to ill-advised management of the couple’s reproductive journey and potentially to financial exploitation. We strongly support this call for a frank debate, with the caveat that this should precede, and not follow, the introduction of this test in the clinic.

Polygenic risk score analyses on embryos (PGT-P) are being marketed by some private testing companies to parents using in vitro fertilisation as being useful in selecting the embryos that carry the least risk of disease in later life. It appears that at least one child has been born after such a procedure. But the utility of a PRS in this respect is severely limited, and to date, no clinical research has been performed to assess its diagnostic effectiveness in embryos. Patients need to be properly informed on the limitations of this use of PRSs, and a societal debate, focused on what would be considered acceptable with regard to the selection of individual traits, should take place before any further implementation of the technique in this population.

Medical knowledge is a powerful instrument that is meant for individual and collective good. Since the time of Hippocrates, we have known it should never be abused, even if serious misuses have occurred in modern history. Among the most recent examples of harm is the compulsory collection of DNA samples from ordinary people being carried out by the Chinese authorities in Xinjiang province as part of a programme of surveillance and control. As members of ESHG, professionals working in genetics and genomics, we feel that we must point out the damage that such a collection may cause: first to those directly affected, but also to the reputation of academic and healthcare institutions (including ethics committees), companies and publishers, and the image of genetics in the wider world. Such abuses of genetic tests and DNA collection may damage the trust citizens put into genetics and the promise of personalised medicine, and thus could impair the future of genetic research and healthcare overall.

Across the world, DNA databases that could be used for state-level surveillance are steadily growing. The most striking case is in China. Here police are using a national DNA database along with other kinds of surveillance data, such as from video cameras and facial scanners, to monitor the minority Muslim Uyghur population in the western province of Xinjiang. Concerns about the potential downsides of governments being able to interrogate people’s DNA have been voiced since the early 2000s by activist groups, such as the non-profit organization GeneWatch UK, and some geneticists (myself included). Partly thanks to such debate, legislation and best practices have emerged in many countries around the use of DNA profiling in law enforcement.