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

Now, a group of scientists has argued that this research, which has made Roma the most heavily studied population in Europe in forensic genetics journals in the past 30 years, is fraught with ethical problems and could harm Roma.

Over five years, a research team in Germany and the United Kingdom reviewed more than 450 papers that used Romani DNA to understand how geneticists and other scientists obtain, interpret and share this genetic information. Their analysis was published in a column in the journal on Wednesday. naturerevealed many examples of clear misconduct or questionable ethics.

Scientists in Hungary in 1981 sampled Regarding the blood of Roma incarcerated in Hungarian prisons, they classified the prisoners as Roma based on their appearance alone, claiming that the authors of the new article are unscientific. Another group in 1993 Romani DNA sampling He drew a line between “true Hungarian ethnic groups” and “Jews” and “Gypsies”, concluding that there are three distinct ethnic groups in the country – a study that the authors of the new paper claim to be racist. In the 2000s, articles on the genetics of Roma still referred to this group with an old term “Gypsy”. slurryor with derogatory terms like “congenital” or “relative”

“This is an important addition to the ongoing conversation about ethical issues in genetic research,” said Deborah Bolnick, an anthropological geneticist at the University of Connecticut who was unrelated to the research. Most of this conversation took place not in Europe, but in North America and Australia, he added.

Dr. “The unethical practices described here are unfortunately all too familiar and not surprising,” Bolnick added.

“It’s terrible,” said Ethel Brooks, a Romani academic and chair of women’s, gender, and sexuality studies at Rutgers University in New Jersey. “But of course, everything we know and suspect.”

The analysis included articles published between 1921 and 2021, most of which were published in the last 30 years. Science historian Veronika Lipphardt of Germany’s University of Freiburg said earlier articles contained “a lot of shocking surprises”, for example samples from incarcerated Roma and many examples of racist language.

“Many didn’t believe us,” said Dr. Lipphardt “because it was very hard to believe that such practices “continue”.

In Europe, the Roma have been oppressed for hundreds of years and are still alive. significant discrimination. Nazis gathered during the Holocaust blood samples From the Roma imprisoned in Auschwitz and murdered hundreds of thousands of Roma and Sinti people. Slovak government in 2015 argued The practice of separating Roma children in schools, falsely citing “mild mental disabilities” due to “high levels of consanguineous marriage” in Roma communities.

Dr. “The transition from genetics to eugenics is one that can be pretty easy,” Brooks said.

Mihai Surdu, visiting sociologist at the University of Freiburg and author of the article, conceptualized the project at the time of writing. book on the novels. Dr. While searching for publications with the word “Roma” or “Gypsies” in their titles, Surdu found close to 20 articles that seemed to be multiple studies on Romani DNA.

Dr. About this phenomenon in 2012, Dr. Surdu said. When he wrote to Lipphardt, he wasn’t sure if it was a coincidence. But over the course of their research, the researchers uncovered more than 450 genetic papers with Roman subjects.

With funding from the German Research Foundation, the two researchers expanded the team to include scholars from different disciplines, and also consulted Anja Reuss, spokesperson for the German Sinti and Rome Central Council, a Heidelberg-based advocacy group.

They found that many studies did not get enough consent from the people they sampled, if they did. Some research has mentioned verbal consent, but “no one really knows what consent really is,” said Peter Pfaffelhuber, a mathematician at the University of Freiburg and author of the paper.

Dr. “In a way, our consent is never considered necessary because we can’t give our consent,” Brooks said.

In 2010, Forensic Science International: Genetics, the main journal of the forensic genetics community, accepted ethical requirements including informed consent. However, some more recently published papers include DNA collected by obscure procedures from previous papers, although they state that they were conducted with the written consent of all participants. Dr. “You can’t just assume that consent 30 years ago is still valid, that it can be extended indefinitely for all possible uses,” Lipphardt said.

A 2015 study Citing the Roma’s Indian origins, they uploaded the DNA data they had collected into two publicly available databases that law enforcement around the world use for genetic references to solve crimes; this was a purpose for which the original participants probably did not consent.

While most of this DNA was collected decades ago, its presence in public databases poses a present danger to modern communities. 2015 research, Rome DNA Y-STR Haplotype Reference Databaseor YHRD is a globally searchable collection of anonymous Y-chromosome profiles. important and controversial tool helping the police solve crimes. In YHRD, Bulgaria’s national database lists 52.7 percent of its datasets as “Roma”, although Roma make up only 4.9 percent of the country’s population. If a minority population is disproportionately represented in a DNA database, this may bias some scientists against “suspicious populations.” to dispute. Some of these profiles came from population studies, where researchers thanked police forces for collecting the DNA.

Social scientist and ethicist at Northumbria University in the United Kingdom and author of the paper, Matthias Wienroth, said marginalized groups such as the Roma are subject to increased surveillance and policing due to personal, institutional and cultural biases. “The continued use of genetic samples and data from marginalized populations further marginalizes these communities.”

Part of the appeal of Romani DNA to geneticists is that the group genetically isolated for hundreds of years. However, the authors argue that many researchers rely on biased samples from intentionally isolated populations. not including data from Romani people of mixed ancestry.

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

Dr. “They perpetuated this narrative against the evidence,” added Surdu.

The authors argue that these highly sampled, isolated datasets, which often name specific villages, could compromise the anonymity of individuals, especially those with rare genetic diseases.

To enable future ethical use of Romani DNA, the researchers proposed four concrete changes. They looked at existing models for the use of ethical DNA for guidance as with Indigenous leadership. SING Consortium and ethical code Dr. Lipphardt said they have prepared a draft governing the use of their own genomes by the San people of South Africa.

To benefit Roma and other communities, the authors recommend the creation of an international oversight committee to search for DNA information from oppressed groups currently held in public databases. They also demand more education from marginalized populations in the ethics of collecting genetic data so that researchers can understand the societal implications of their work.

The authors also refer to the journal Springer Nature’s last retreat Of six articles using DNA from Chinese minority ethnic groups.

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

Most genetic studies of Romani DNA seek to either pinpoint the origins of Roma in India or identify their unique genetic mutations. But few efforts aim to benefit the health and well-being of the Roma community, many of whom live in segregated settlements, with less access to resources such as housing and education. Dr. Lipphardt cautioned that even if genetic studies of Romani DNA lead to cures for rare diseases, there is no guarantee that these treatments will be made readily available to Roma.

The authors suggest that scientists collaborate with Romani people and train them to pursue research questions about their communities. Only a paper Of the 450 they studied, they cited community involvement, including training Roma doctors, nurses and midwives, and conducting educational health screenings.

However, Dr. Surdu found this engagement insufficient, as researchers did not allow Roma concerns to drive research or engage with the wider community, but only recruited Roma mediators to conduct a planned study. He added that he sees access to health and social services as a basic human right. Dr. “Informed consent for samples collected for genetic research should be purely voluntary,” Surdu said.

Dr. These built-in barriers to education are part of the reason why there are fewer Romani scientists, Brooks said. He said he was excited about the possibility of Romani having their DNA checked, both by outside research and in the context of their own family.

“To really make room for this kind of discussion in marginalized communities?” said Brooks. “It would be a scientific revolution.”