An analysis of how DNA samples collected from the Roma people of Europe have been used and interpreted highlights unethical research practices, a University of Freiburg-led team of researchers writes in a Nature commentary.
The team examined 450 papers published between 1921 and 2021 – most of which were published in the past three decades – as well as studied DNA database entries, interviewed scientists, ethicists, and others, and consulted with an advocate for the Roma people. As the team led by Freiburg's Veronika Lipphardt writes in their commentary, they found many DNA samples were collected from prisoners, by police, or by medical practitioners who provided single datasets and often with unclear consent processes. Additionally, many studies used pejorative terms to refer to the Roma people and have, in turn, been used to justify discriminatory policies toward Roma people, they write.
"Many didn't believe us because it was simply so hard to believe" approaches like those were still in use, Lipphardt tells the New York Times of their findings.
Lipphardt and her colleagues call for the creation of an international oversight board to oversee research affecting marginalized groups as well as for the retraction of unethical work and better training and community involvement.