ESHG warns against misuses of genetic tests and biobanks for discrimination purposes

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 [1]. 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. The recent announcement by Springer Nature of the retraction of a 2019 paper [2] on Y-chromosome profiling of ethnic minorities in China and of another on InDel profiling [3], and the placing under scrutiny of more than two dozen others for similar concerns, is an important step in the right direction. However, it still appears that almost half of over a thousand articles describing forensic genetics studies in Chinese populations have at least one co-author from the Chinese police, judiciary or related institutions. It is impossible to carry out forensic population genetics research in China independently from the Chinese authorities. All this literature is thus potentially ethically tainted. Publishers correctly require that the studies described in submitted manuscripts have ethical approvals. However, they may fail to recognise that some ethics committees may not function or abide by expected ethical standards. For example, multiple studies have been approved by ethics committees run by the Chinese Ministries of Public Security or Justice. In the retracted study on InDel markers, the investigation revealed that out of four Chinese populations, ethical approval had only been obtained for the Han majority group. Publishers should conduct a mass reassessment of this literature and require further information on consent and ethical approvals in addition to considering whether the studies fulfil the basic ethical requirements for non-maleficence, beneficence, justice and veracity. Such an assessment would be important if, in the future, any doubt arises about the data and the uses to which they may be put. These problems extend beyond China. For example, the Y-chromosome haplotype reference database (YHRD), hosted by the Charité University of Berlin, contains over 12,000 forensic Y-chromosome profiles from vulnerable Chinese populations [4]. The YHRD also contains considerable multiple data sets on Roma people, and their over-representation in the database is significant. For example, among 600 Y-chromosome profiles from Bulgaria, 311 are from Roma individuals [5]. We would like to see an end to collaborations between academic and clinical institutions worldwide and institutions in countries carrying out widespread, unethical DNA collections and/or analysis, and any databases containing such material destroyed, or have any ethically problematic data removed. We would encourage institutions to carry out regular reassessments of such databases, following an initial assessment that considers the risk of potential abuse and provides guidance on how it may be avoided. We suggest that companies, too, should stop sales to the institutions involved in ethically tainted genetic research. One of the largest companies serving the area, Thermo Fisher Scientific, has decided to stop sales of equipment to Xinjiang police forces, but such action by one company alone is insufficient to tackl