Building off five years of research, analysis of 100s of publications and examination of five databases, researchers at the University of Freiburg have recently authored an article in Nature detailing how Europe’s Roma people are vulnerable to poor practice in genetics.
The main issues, as identified by lead author Veronika Lipphardt and her team, center on poor ethical standards, unclear consent processes and a stigmatizing portrayal of the Roma group. The new article is a follow up to two studies published by the research group a year ago to the day. The team includes sociologists Mihai Surdu and Nils Ellebrecht, mathematician Peter Pfaffelhuber, bioethicist Matthias Wienroth of Northumbria University, and human geneticist Gudrun Rappold from Heidelberg University Hospital.
Roma are currently Europe's largest minority group with 10 to 12 million people. In the more than 450 papers the researchers scoured—more than 2/3 published in the past 30 years—most geneticists assumed the Roma were a genetically isolated, clearly definable group originating from India, which therefore applied to all European Roma. However, according to Lipphardt’s team, not only is this an erroneous assumption, but it also has far-reaching consequences. In fact, most Roma have not lived in isolation for centuries, but have ancestors from many different countries in Europe.
“Portraying them as an isolated, foreign group could contribute to stigmatization and exclusion,” said Lipphardt.
"In addition, the recruitment of individuals, some of which was carried out in very limited areas where people live together in close communities in isolation, carries the risk of biased samples that distort scientific results and their interpretation in terms of content" adds Rappold. "Thus, this is also not a representative cross-section of Roma in Central Europe."
The cross-disciplinary team also found that for many DNA samples, full consent was not obtained, and if it was, the procedures utilized to gain consent were inadequate. This was especially true for forensic genetic studies.
From interviews with geneticists, the research team learned that participants in some studies were told only that their data would reveal whether they were carriers of genetic diseases, not that their genetic information could be posted in public databases used by law enforcement.
Additionally, Roma are overrepresented in these public databases accessed by law enforcement. In Bulgaria‘s national database, for example, 53 percent of records are categorized as Roma, even though they make up only 5 percent of the Bulgarian population. Only 37 percent of individuals in the database are characterized as Bulgarians.
The scientific publishing industry has already caught on to the increased awareness of exploitation of minority populations. In the last year, the International Journal of Legal Medicine and Human Genetics retracted six papers that use DNA from Chinese minority ethnic groups. Lipphardt said another journal is currently investigating a study that uses DNA from Roma people.
Still, there is more that can and should be done, the study authors say. They list four specific actions in their article:
- Establishment of an international oversight board
- Retraction of unethical work and improvement of publishing practices
- Improved scientific training
- Encouraged community participation
“In our view, research and peer-review practices need to change across a broad spectrum of disciplines, from forensic genetics to molecular anthropology,” said sociologist Surdu.
“Because human genetic variation has so often been misunderstood or even misrepresented and misinterpreted in the sciences in the past, these challenges need to be addressed to maintain trust in science as well as in health care, law enforcement and criminal justice,” concluded Lipphardt.
Photo: Street performance during the Khamoro-World Roma Festival in Prague. Credit: Jialiang Gao