Comment: Roma people in Europe are vulnerable to poor practice in genetics, analysis reveals

An analysis of research papers and DNA databases reveals multiple ethical issues with the handling and interpretation of DNA data from Roma people, according to a group of academics including Dr Matthias Wienroth from Northumbria. Writing in this week’s Nature, Veronika Lipphardt, Mihai Surdu, Peter Pfaffelhuber and Nils Ellebrecht from Freiburg University in Germany, Matthias Wienroth from Northumbria University and Gudrun Rappold from Heidelberg University in Germany argue that, “Geneticists in Europe need to face up to the fact that unethical research practices are still happening on home soil — not just on other continents.”

Over five years, Lipphardt and colleagues have investigated five public DNA databases and more than 450 publications to better understand how researchers, from geneticists to molecular anthropologists, have obtained and studied DNA from Roma people — the largest minority group in Europe. The team questioned 10 researchers, 3 ethics committees and 13 research and funding institutions and journal editors about their methods and policies.

The authors flag numerous problems with studies published between 1921 and 2021 (roughly two-thirds of which were published in the past three decades). They highlight issues with consent; with how data have been or are being shared and used, including by law-enforcement agencies; with the language researchers use when describing Roma people; and with methodological approaches and interpretations.

In their view, research and peer-review practices must change, and they advocate four key actions to help resolve the issues. The first is to establish an international oversight board. This would involve human and forensic geneticists, bioethicists, medical scientists, anthropologists and scholars from the social sciences and humanities — as well as community advocates — investigating all the DNA data held in public databases that has been obtained from oppressed groups. It would extend the ethical diligence better established in medical genetics to research on all human genetic data, and could be led by the European Society of Human Genetics, the authors suggest. They also recommend retracting unethical work; improving publication practices; improving scientific training; and encouraging participation from the communities whose DNA might be studied. 

“Given our long history of misrepresenting human genetic variation, these challenges must be met if people’s trust in science, as well as in health care, policing and criminal justice, is to be retained — or, in some cases, restored,” they conclude.

The full article can be viewed here