Article ID: CBB692811795

Representing vulnerable populations in genetic studies: The case of the Roma (2021)


Moreau (2019) has raised concerns about the use of DNA data obtained from vulnerable populations, such as the Uighurs in China. We discuss another case, situated in Europe and with a research history dating back 100 years: genetic investigations of Roma. In our article, we focus on problems surrounding representativity in these studies. We claim that many of the circa 440 publications in our sample neglect the methodological and conceptual challenges of representativity. Moreover, authors do not account for problematic misrepresentations of Roma resulting from the conceptual frameworks and sampling schemes they use. We question the representation of Roma as a “genetic isolate” and the underlying rationales, with a strong focus on sampling strategies. We discuss our results against the optimistic prognosis that the “new genetics” could help to overcome essentialist understandings of groups.

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Authors & Contributors
Glick, Thomas F.
Allen, Garland E.
Barbujani, Guido
Tarkkala, Heta
Grodwohl, Jean-Baptiste
Tupasela, Aaro
Journal of the History of Biology
Mefisto: Rivista di medicina, filosofia, storia
Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences
De Gids
Social Studies of Science
Oxford University Press
Population genetics
Human genetics
Dobzhansky, Theodosius
Wright, Sewall
Mayr, Ernst
Haldane, John Burdon Sanderson
Roper, Elmo
Gallup, George H.
Time Periods
20th century, early
20th century
19th century
21st century
20th century, late
United States
Moscow (Russia)
North America
New Zealand

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