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“Bulgaria, mid-1990s. Scientists set out to collect as much genetic data as possible from the Roma population. At that time, many Roma in Bulgaria lived in isolated communities where they married. to each other. ” Thus began an extensive article by Joachim Bude in Deutschlandfunk on manipulated genetic research on the Roma. The author spoke with Veronica Liphard from the University of Freiburg, who together with her research team has studied more than 450 publications from the last 100 years related to genetic data on Roma.
She told the journalist that in 2014 Bulgarian scientists wrote that for the purposes of their project they managed to persuade 97% of the residents of these closed Roma communities to donate DNA samples. “It’s an incredible amount, just impressive. And based on that data, dozens of scientific publications have since emerged that have shown that the Roma are a reservoir of specific – genetically determined – diseases.”
Roma origin: a homogeneous group from India?
Apart from medical issues, questions about the origin of the Roma are also of interest. Since the end of the 18th century, linguists and local historians have created an image of the Roma as a homogeneous group that migrated from India and settled in Europe. Bulgarian geneticists combine their results with data from isolated Roma groups from other European countries. Their publications confirm the image of the Roma as a homogeneous group. At least at first glance, the German journalist points out, quoting Veronica Liphard, who explains: “It says, for example, that all European Roma come from five small major populations with roots in India. communities, then are simply presumed to be valid for all other European Roma as well.
The Roma as an imaginary community
However, in most regions of Europe, Roma do not live in such isolated communities. Bulgarian geneticists therefore adopt an infamous tradition of thought, taking it to extremes, says Veronica Liphard. “But in this case it is something imaginary or, as historians say, the Imagined Community: it is not in their own eyes, but only in the eyes of others. In fact, all European countries call the Roma much more people. “And more than the Roma themselves would define as such. And any attempt to put this group under a common denominator is doomed to failure. Nowhere have I been able to find this common denominator,” Liphard said. However, some scientists are still looking for it. And when they didn’t like the selection of participants in an analysis, they just embellished the analysis itself.
“For example, in laboratory tests, scientists often find that someone who claimed that his grandparents were Roma obviously did not tell the truth. But the samples in question are then simply removed from the selection because they look too European.” points out Veronica Liphard.
“Studies with Inadmissible Generalizations”
And it follows from all this that the results of such studies are often distorted and contain inadmissible summaries, writes the author of the article in “Deutschlandfunk”. “It’s like saying, for example, that since the inhabitants of Alpine villages in Switzerland suffer from all sorts of genetic diseases, they also apply to the entire population of Switzerland,” the Freiburg researcher told him.
Many of the publications analyzed by the research team at the University of Freiburg have an additional ethical issue: nowadays, scientists are required to provide concrete evidence that participants in their research have agreed to use their genetic data for scientific purposes. Such documentation is lacking in many Roma studies. “In the 1980s, there were even surveys of prisoners, and no one can say that these people voluntarily gave informed consent to participate in such projects,” said Veronica Liphard.
Author: Joachim Bude (Deutschlandfunk)