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 , Veronika Lipphardt, Mihai Surdu, Peter
Pfaffelhuber and Nils Ellebrecht from Freiburg University in Germany, Matthias
Wienroth from ϲ 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
