Roma DNA has long been misused, scientists reveal


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

Today, a group of scientists have argued that this research, which has made the Roma the most studied population in Europe for the last 30 years in forensic genetics journals, is riddled with ethical issues and may harm people’s lives. Roma people.

Over five years, a team of researchers in Germany and the UK studied more than 450 papers that used Roma DNA to understand how geneticists and other academics obtained, interpreted and shared this genetic information. Their analysis, published Wednesday in an editorial in the journal Nature, revealed many cases of obvious abuse or questionable ethics.

In 1981, when Hungarian scientists sampled The blood of Roma incarcerated in Hungarian prisons, they classified the prisoners as Roma solely on the basis of their appearance, which, according to the authors of the new document, is not scientific. In 1993, another group rom DNA sampling concluded that there were three distinct ethnic groups in the country, drawing a line between “genuine Hungarian ethnic groups” and “Jews” and “gypsies” – a research premise that the authors of the new article deem racist. In the 2000s, articles on Roma genetics still referred to the group with the outdated term “Gypsy”, which is considered a connection, or with derogatory terms such as “innate” Where “inbred. “

“This is an important contribution to the ongoing conversation about ethical issues in genetic research,” said Deborah Bolnick, an anthropologist geneticist at the University of Connecticut who was not involved in the research. Much of that conversation took place in North America and Australia, not Europe, she added.

“The unethical practices described here are unfortunately very familiar and come as no surprise,” added Dr Bolnick.

“It’s just horrible,” said Ethel Brooks, a Roma scholar and chair of the women, gender and sexuality studies department at Rutgers University in New Jersey. “But of course, these are all things we have known and suspected. “

The analysis focused on articles published between 1921 and 2021, most of which were published within the past 30 years. Previous articles contained “so many shocking surprises,” said Veronika Lipphart, a science historian at the University of Freiburg, Germany, such as samples taken from incarcerated Roma and numerous instances of racist language.

“Many didn’t believe us,” said Dr Lipphart, “because it was just so hard to believe” that such practices were “happening”.

In Europe, the Roma have been oppressed for hundreds of years and still face significant discrimination. During the Holocaust, the Nazis collected blood samples Roma imprisoned in Auschwitz and murdered hundreds of thousands of Roma and Sinti. In 2015, the Slovak government forbidden its practice of segregating Roma children in schools, falsely citing “mild mental disabilities” linked to “high levels of inbreeding” in Roma communities.

“The shift from genetics to eugenics can happen quite easily,” Dr. Brooks said.

Mihai Surdu, visiting sociologist at the University of Friborg and author of the article, conceptualized the project when he wrote a book on the Roma people. Searching for publications with the words “Roma” or “Gypsies” in the headlines, Dr Surdu found what appeared to be an inordinate number of studies on Roma DNA – almost 20 articles.

When Dr Surdu wrote to Dr Lipphart in 2012 about this phenomenon, he was unsure if it was fluke. But during their study, the researchers discovered more than 450 genetic articles with Roma subjects.

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

They found that many studies did not adequately seek the consent of those sampled, if at all. Some studies have cited oral consent, but “no one knows what the consent actually was,” said Peter Pfaffelhuber, a mathematician at the University of Freiburg and author of the article.

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

In 2010, the leading journal in the forensic genetics community, Forensic Science International: Genetics, ethical rules adopted including informed consent. But while some more recently published articles indicate that they were conducted with the written consent of all participants, they include DNA from earlier articles that were collected with obscure procedures. “You cannot assume that the consent of 30 years ago is still valid, that it can be extended forever for all possible uses,” said Dr Lipphart.

A 2015 study Highlighting the Indian origins of the Roma, they uploaded their DNA dataset accumulated in two public databases that law enforcement agencies around the world use for DNA references to solve crimes, a goal to which participants of origin probably did not consent.

Even though much of this DNA was collected decades ago, its presence in public databases poses a current danger to modern communities. The 2015 study uploaded Roma DNA to the reference database of Y-STR haplotypes, or YHRD, a searchable global collection of anonymous Y chromosome profiles that has become a crucial and contested tool help police solve crimes. In YHRD, the National Database for Bulgaria lists 52.7% of its datasets as “Roma”, even though Roma only make up 4.9% of the country’s population. If a minority population is disproportionately represented in a DNA database, it could create a bias against “suspect populations”, some researchers Argue. Some of these profiles come from population studies where the researchers thanked the police for collecting the DNA.

Marginalized groups like the Roma are under increased scrutiny and scrutiny due to personal, institutional and cultural biases, said Matthias Wienroth, sociologist and ethicist at the University of Northumbria in the UK and author of the article. “The continued use of genetic samples and data from marginalized communities further marginalizes these communities. “

Part of the appeal of Roma DNA to geneticists is the hypothesis that the group was genetically isolated for hundreds of years. But the authors argue that many researchers rely on biased samples from isolated populations while excluding data from Roma of mixed ancestry.

“It was probably the easiest to get blood samples from these places,” said Gudrun Rappold, a human geneticist at the University of Heidelberg and author of the article. “But then draw conclusions about these millions and millions of Roma? It just leads to the wrong conclusion.

Dr Surdu added, “They have maintained this account contrary to the evidence.”

These isolated and heavily sampled datasets, which often name specific villages, could also endanger the anonymity of individuals, especially those with rare genetic diseases, the authors argue.

To ensure that Romani DNA is used ethically in the future, the researchers proposed four concrete changes. They looked to existing models of ethical DNA use for advice, such as the indigenous-led SING consortium and the code of ethics written by the San people of South Africa governing the use of their own genome, Dr Lipphart said.

The authors recommend forming an international watchdog to investigate DNA information of oppressed groups that is currently held in public databases, for the benefit of 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 societal implications of their work.

The authors also call on journals to investigate or withdraw ethically heavy studies that include Roma DNA, citing Springer Nature’s recent retraction of six articles using DNA from Chinese ethnic minority groups.

Finally, the researchers call for more conversations between scientists and participants, so that Roma can learn more about the benefits and risks of DNA donation.

Most of the genetic studies of Roma DNA seek either to identify the origins of the Roma people in India or to identify their unique genetic mutations. But few studies aim to improve the health and well-being of the Roma community, many of whom live in isolated neighborhoods with less access to resources like housing and education. Dr Lipphart warned that even if genetic studies on Roma DNA led to treatments for rare diseases, there was no guarantee that these therapies would be readily available to Roma.

The authors suggest that scientists collaborate with Roma and train them to pursue research questions relevant to their communities. Alone a paper of the 450 they examined mentioned community involvement, including training Roma doctors, nurses and midwives and carrying out educational health examinations.

But Dr Surdu considered this involvement insufficient as the researchers did not let Roma concerns guide the research or involve the community as a whole, but only recruited Roma mediators to conduct a planned study. He added that he considers this access to health care and social services as a fundamental human right. “Informed consent for samples collected for genetic research should be completely voluntary,” said Dr Surdu.

These entrenched barriers to education partly explain why there are fewer Roma academics, Dr Brooks noted. She said she felt excited about the prospect of Roma having surveillance of their DNA, both in the context of outside research and of their own families.

“To really open up a space for this kind of discussion within marginalized communities?” Says Dr Brooks. “It would be a scientific revolution.

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