Analysis of how papers and databases are handled and interpreted shows that geneticists in Europe must stamp out unethical research practices at home, not just abroad.<\/p>\n\n\n\n
Veronika Lipphardt<\/a> , Mihai Surdu<\/a> , Nils Ellebrecht<\/a>, Peter Pfaffelhuber<\/a> , Matthias Wienroth<\/a> & Gudrun A. Rappold<\/a><\/p>\n\n\n\n In the past few years, several media and scientific reports have raised awareness about unethical uses of DNA databases. Perhaps the most alarming is the Chinese government\u2019s use of DNA to monitor the Uyghur minority ethnic population<\/a>, which is predominantly Muslim, in Xinjiang province.<\/p>\n\n\n\n Yet problems with DNA databases are more widespread and entrenched than many geneticists either realize or want to acknowledge.<\/p>\n\n\n\n For many samples, either there is no record of consent being obtained from individuals whose DNA was collected, or the procedures used to obtain consent were inadequate. This applies to numerous studies involving Indigenous communities, including Australia\u2019s Aboriginal and Torres Strait Islander people, Native American communities in the United States and the San people in southern Africa1<\/a><\/sup>. Moreover, people often have little or no say in how their DNA will be used, and rarely benefit from the studies1<\/a><\/sup>.<\/p>\n\n\n\n Now, our analysis of several hundred publications and five databases points to multiple issues with the handling and interpretation of DNA data from Roma people. The Roma are the largest minority group in Europe<\/a>.<\/p>\n\n\n\n In our view, research and peer-review practices must change across a broad array of disciplines, from forensic genetics to molecular anthropology. Failure to correct past and ongoing mistakes puts more people at risk of harm from the collection of DNA. It also threatens the reputation of human genetics \u2014 and of science in general.<\/p>\n\n\n\n Around 10 million to 12 million Roma people currently live in Europe. The term Roma was introduced in the 1980s to replace labels such as \u2018Gypsy\u2019 or \u2018Zigeuner<\/em>\u2019 (used in Germany) \u2014 words perceived in many European countries to be extremely insulting. Here, we use \u2018Roma people\u2019 to describe individuals who self-define as Roma or who are referred to as Roma by the European Union and European nation states. Yet we acknowledge that the term is problematic and can have reifying effects2<\/a><\/sup>.<\/p>\n\n\n\nThe Roma in Europe<\/strong><\/h2>\n\n\n\n