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DNA of Roma people has been misused for a long time, scientists revealed

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DNA of Roma people has been misused for a long time, scientists revealed

For decades, geneticists have collected the blood of thousands of people from the Roma, a marginalized group living in Europe, and deposited their DNA into public databases. The direct aim of some of these studies was to learn more about the history and genetics of the Roma people.

Now, a group of scientists argue the research, which has made the Roma one of the most intensively studied in Europe over the past 30 years in forensic genetic journals, is fraught with ethical issues and could harm the Romani people.

For five years, a team of researchers in Germany and the United Kingdom looked at more than 450 papers that used the DNA of the Roma people to understand how geneticists and other scholars obtained, interpreted and shared genetic information. did. Their analysis, published Wednesday in the journal Nature, revealed several instances of explicit abuse or questionable ethics.

In 1981, when Hungarian scientists sampled the blood of Roma people held in Hungarian prisons, they classified the prisoners as Romani based solely on their appearance, which the authors of the new paper argue. This is unscientific. In 1993, another group sampling Romani DNA concluded that there were three distinct ethnic groups in the country, drawing a line between “genuine Hungarian ethnic groups” and “Jews” and “Gypsies” – a thesis. The authors of the new paper argue. was racist. In the 2000s, papers on the genetics of the Roma people still referred to the group with the older term “gypsy”, considered a slur, or with derogatory terms such as “inbred” or “consanguinous”.

“This is an important contribution to the ongoing conversation about ethical issues in genetic research,” said Deborah Bolnick, an anthropological geneticist at the University of Connecticut who was not involved in the research. He said that most of the talks have taken place not in Europe, but in North America and Australia.

“The unethical practices described here are unfortunately very familiar and not surprising,” Dr. Bolnick said.

“It’s just horrifying,” said Ethel Brooks, a Romantic scholar and chair of the Department of Women, Gender and Sexuality Studies at Rutgers University in New Jersey. “But of course, it’s all things we know and suspect.”

The analysis spanned papers published between 1921 and 2021, most of which were published in the past 30 years. The earlier papers included “so many astonishing surprises”, such as samples taken from the Roma people and many examples of racist language, said Veronica Lipfurt, a science historian at the University of Freiburg in Germany.

“Many people didn’t believe us,” Dr. Lipfert said, “because it was so hard to believe” that such practices “were going on.”

In Europe, the Roma people have been oppressed for hundreds of years and still experience significant discrimination. During the Holocaust, the Nazis collected blood samples from imprisoned Roma people in Auschwitz and murdered hundreds of thousands of Roma and Sinti people. In 2015, the Slovakian government defended its practice of segregating Roma children in schools, citing “mild mental disabilities” in Romani communities tied to “high levels of inbreeding”.

“The slip from genetics to eugenics is one that can happen quite easily,” said Dr. Brooks.

The project was conceptualized by Mihai Surdu, a visiting sociologist at the University of Freiburg and an author on the paper while writing a book on the Roma people. When searching for publications with the words “Roma” or “Gypsy” in the titles, Dr. Surdu found what seemed like a plethora of studies on Roma DNA – about 20 papers.

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When Dr. Surdu wrote to Dr. Lipfert about the incident in 2012, he was unsure whether it was a temporary phenomenon. But in the course of their study, the researchers uncovered more than 450 genetic letters with Roma subjects.

With funding from the German Research Foundation, the two researchers expanded the team to include scholars from diverse disciplines, and also consulted with Anja Reis, a spokesperson for the Central Council of German Sinti and Roma, an advocacy group based in Heidelberg. .

They found that many studies did not adequately ask for consent from the people they sampled if they did obtain consent. Some studies cited verbal consent, but “no one knows what the consent really was,” said Peter Pfebelhuber, a mathematician at the University of Freiburg and an author on the paper.

“In a way, our consent is never deemed necessary because we are not deemed capable of giving our consent,” Dr Brooks said.

In 2010, the main journal in the forensic genetics community, Forensic Science International: Genetics, adopted ethical requirements including informed consent. But although some recently published papers suggest that they were conducted with the written consent of all participants, they contain DNA from earlier papers that were collected with questionable procedures. “You cannot assume that consent from 30 years ago is still valid, that it can be extended forever to all possible uses,” Dr. Lipfert said.

Pointing to the Indian origin of the Roma people, a 2015 study uploaded their collected DNA data sets to two public databases that law enforcement agencies around the world use to solve crimes for genetic references. for a purpose for which the original participants did not consent.

Although much of this DNA was collected decades ago, its presence in public databases is a current threat to modern communities. The 2015 study uploaded Roma DNA to the Y-STR Haplotype Reference Database, or YHRD, a searchable worldwide collection of anonymous Y-chromosome profiles that became an important and competitive tool in helping police solve crimes Is. In the YHRD, the national database for Bulgaria lists 52.7 percent of its data set as “Romany”, even though Roma people make up only 4.9 percent of the country’s population. If minority populations are disproportionately represented in DNA databases, this could lead to bias against “suspect populations”, some scholars argue. Some of these profiles came from population studies where researchers thanked police forces for collecting DNA.

Marginalized groups such as the Roma people are subject to increased surveillance and policing because of personal, institutional and cultural bias, said Mathias Wieneroth, a social scientist and ethicist at Northumbria University in the United Kingdom and an author on the paper. “The continued use of genetic samples and data from marginalized communities further marginalizes these communities.”

Part of the attraction of Romani DNA to geneticists is the belief that the group has been genetically isolated for hundreds of years. But the authors argue that many researchers rely on biased samples from different populations, while deliberately excluding data from Romani people with mixed ancestry.

“It was probably easiest to get blood samples from these places,” said Gudrun Rapold, a human geneticist at Heidelberg University and an author on the paper. “But then to draw conclusions regarding these millions and millions of Roma people? It’s just leading to the wrong conclusion.”

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Dr. Surdu added, “He has perpetuated this narrative contrary to the evidence.”

The authors argue that these highly sampled, isolated data sets, which often name specific villages, may also threaten the anonymity of individuals, particularly those with rare genetic diseases.

To ensure that Romani DNA is used ethically in the future, the researchers proposed four concrete changes. He looked to existing models for ethical DNA use for guidance, such as the indigenous-led Sing Consortium and the ethics code governing the use of their own genomes by the San people of South Africa, Dr. Lipfert said.

The authors recommend the creation of an international oversight board to examine DNA information from oppressed groups that is currently in public databases, to benefit Roma and other communities. They also call for more training on the ethics of collecting genetic data from marginalized communities, so that researchers can understand the social implications of their work.

The authors also called on journals to examine or withdraw ethically filled studies that contained Romani DNA, citing a recent return of six papers by Springer Nature using DNA from Chinese minority ethnic groups. Giving.

Finally, the researchers called for more interaction between scientists and participants, so that Roma people can learn about the benefits and risks of donating DNA.

Most genetic studies of Roma DNA seek to either identify the origin of the Roma people in India or point to their unique genetic mutation. But some studies aim to benefit the health and well-being of the Romani community, many of whom live in isolated settlements with little access to resources such as housing and education. Dr. Lipfert cautioned that even though genetic studies on Roma DNA may lead to a cure for rare diseases, there is no guarantee that those treatments will be readily available to Roma people.

The authors recommend that scientists collaborate with and train Roma people to advance research questions relevant to their communities. In only one paper out of 450 they mentioned community involvement, including training Roma doctors, nurses and midwives, and conducting educational health checks.

But Dr. Surdu considered this participation insufficient because the researchers did not allow Romani concerns to guide the research or involve the larger community, but only recruited Roma moderators to conduct the planned study. He said he sees this access to health care and social services as a basic human right. “Informed consent for samples collected for genetic research should be completely voluntary,” Dr Surdu said.

Dr. Brooks said that these deep barriers to education are the reason for the lack of Romani scholars. She said she feels excited about the prospect of Romani people monitoring their DNA, both in the context of outside research and their own families.

“To really open up space for these kinds of discussions within marginalized communities?” Dr. Brooks said. “It will be a scientific revolution.”

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