In the light of concerns about the many ethical issues posed by the handling and interpretation of DNA data from minorities, the ESHG intends to set up a (Gen)Ethics Oversight Committee (GEOC) to review and develop guidelines on ethical issues, particularly those related to population genetics. Although ESHG has no direct connection with DNA collection or the databases that are problematic in this respect, the committee will instigate a complaints procedure, as well as a route map for the handling of publications with a difficult ethical background in the Society’s journal, The European Journal of Human Genetics.
The GEOC will liaise with other ESHG committees over the development of a Society Code of Ethics, the improvement of publication practices, and the instigation of training courses on this topic. It will also investigate and make recommendations on individual cases.
“To date international scrutiny has focused mainly on unethical practices in population genetics on other continents,” said Dr Francesca Forzano, chair of the Society’s Public and Professional Policy Committee. “But there are also problems closer to home, and we need to make sure that these are dealt with effectively. DNA data used in population research must always be obtained and used in a strictly ethical way, following the rigorous standards highlighted in documents as the WMA Declaration of Helsinki. This means, for example, being certain that properly informed consent has been obtained. Sadly, we know that this has not always been the case in the past.
“Genetic research today holds out so much promise for the improvement of human health, and it is thus vital for the public good that trust should be maintained, and openness encouraged.”