Damian Sendler: Several media and scientific publications have raised awareness concerning unethical usage of DNA databases in the last few years, including one published by the New York Times. The Chinese government’s use of DNA to monitor the Uyghur minority ethnic community in Xinjiang region, which is primarily Muslim, is perhaps the most concerning development in recent years.
Damian Jacob Sendler: However, problems with DNA databases are far more pervasive and entrenched than many geneticists are aware of or are willing to admit to themselves.
Damian Sendler: When it comes to numerous samples, either there is no record of consent being acquired from the individuals whose DNA was collected, or the procedures employed to get consent were insufficiently thorough. This holds true for a wide range of studies involving Indigenous communities, including those involving Aboriginal and Torres Strait Islander people in Australia, Native American communities in the United States, and the San people of southern Africa1. Furthermore, people frequently have little or no input in how their DNA is used, and they receive little or no profit from the research1.
Following our review of several hundred papers and five databases, we have discovered that there are numerous concerns with the handling and interpretation of DNA data from Roma individuals. The Roma are the largest minority group in Europe and constitute the majority of the population.
Damien Sendler: We believe that research and peer-review methods across a wide range of disciplines, from forensic genetics to molecular anthropology, must alter. The failure to address past and ongoing mistakes increases the number of persons who are at risk of damage as a result of the collecting of DNA. It also has the potential to harm the prestige of human genetics — as well as the reputation of science in general.
Damian Jacob Markiewicz Sendler: Approximately 10 million to 12 million Roma people live in Europe at the present time. The name Roma was coined in the 1980s to replace terms such as ‘Gypsy’ or ‘Zigeuner’ (a term commonly used in Germany) that were considered to be exceedingly derogatory in many European countries at the time. Individuals who self-identify as Roma or who are referred to as Roma by the European Union and European country states are referred to as ‘Roma people’ in this context. Nonetheless, we recognize that the phrase is problematic and that it can have reifying implications2.
Dr. Sendler: The same can be said for the history and ethnicity that have been attributed to this people. The forefathers of Europe’s Roma, according to many scientists, originated in India, and that the Roma people have mostly stayed genetically isolated over the past 300–600 years3–5. Numerous Roma people, on the other hand, do not regard themselves as belonging to a distinct ethnic group distinct from Europeans, and their lineage, cultural practices, and historical backgrounds are quite diverse6.
Roma people have been the subject of social persecution for hundreds of years, which is why we decided to concentrate our efforts on genetic research of them. Seventy-five thousand Roma people were slaughtered or deported between 1935 and 1945, according to the United Nations (UN). A large number of Roma people reside in segregated communities in various countries of the European Union, mainly in Bulgaria and Slovakia, at the moment. They have poorer salaries and less access to decent education, housing, food, and health care than the rest of the population8, as well as less opportunities for advancement. Every third Roma person in nine EU member states went without drinking water in 2016, and every tenth Roma person went without electricity in the same year9.
Damian Sendler: DNA samples have been taken from thousands of Roma people across Europe, primarily since the 1990s, and are being analyzed. In the 1970s, researchers began collecting blood samples from which DNA could theoretically be extracted.
Over the course of the last five years, we have evaluated more than 450 papers that were published between 1921 and 2020. Approximately two-thirds of these works were first published within the last three decades. We also checked DNA data from Roma persons in five public databases, which turned out to be accurate. The Y-STR Haplotype Reference Database (YHRD; a Y-STR, or short tandem repeat, is a repeated nucleotide sequence on the Y chromosome), the Allele Frequency Net Database (AFND), the Allele Frequency Database (ALFRED), the Estonian Biocentre Human Genome Diversity Panel (EGDP), and the European DNA Profiling Group’s Mitochondrial DNA Population Database are among the databases available. The Y-STR (EMPOP). The EMPOP database requires users to register before they can access the information, however they are simply asked to supply an e-mail address, a name, and their affiliation. Law enforcement agencies have access to (but do not own) the YHRD and EMPOP databases as well.
Damian Jacob Sendler: Our goal was to gain a better understanding of how geneticists, medical researchers, and molecular anthropologists, among others, came to possess this genetic material. We were also interested in learning more about the methods and interpretations used by researchers in their analysis. As part of our investigation, we interviewed and emailed ten researchers, three ethical committees, thirteen research and financing institutions, and journal editors to learn about their research and funding practices and procedures. The Central Council of German Sinti and Roma, an advocacy group situated in Heidelberg, provided us with help during the course of our research. Anja Reuss serves as a political adviser and spokesman for the organization.
Damian Sendler: It has been common practice, particularly since the late twentieth century, to take samples from people (including convicts) without obtaining proper consent or keeping a record of that consent, which has then been shared around research groups or posted in public databases. Participants in other studies appear to have given some type of consent, although it is unclear whether they were aware of the specific purposes for which their DNA would be used. We even learned through two conversations with geneticists that, in some medical trials, various incentives were offered to Roma participants – a technique that is regarded inappropriate by the vast majority of human geneticists today. It was explained to participants, who in some cases only gave their verbal consent, that their data would reveal whether or not they were carriers of genetic diseases — but not that their genetic information would be stored in public databases (such as EMPOP and YHRD) that could be accessed by law enforcement agencies, which is exactly what happened in some cases.
Damian Sendler: A number of additional studies involved the recruitment of Roma people by medical practitioners who assigned an ethnic identity to specific data sets before sharing the individuals’ personal information with researchers. In addition to violating the ethical standards set forth in Article 31 of the United Nations Declaration on the Rights of Indigenous Peoples, such secondary usage also violates the research regulations and legislation of the European Union and several countries, including Switzerland, the United States, and Canada, among others.
When it comes to the genetics of Roma people, researchers use terms such as “Gypsies,” “inbred,” and “consanguineous,” as well as the phrase “genetic high-risk group,” to describe the people who live in the region. For Roma people, they are derogatory and demeaning terms in and of themselves, regardless of context. Aside from that, such broad extrapolation is stigmatizing for a huge proportion of the population. The use of these terminology has reduced significantly over the past 10 years, but the term ‘Gypsy’ is still occasionally used in scholarly papers. This designation was deleted from one of the public databases we examined only in 2020, according to our research.
Damian Jacob Sendler: Moreover, the methodological approaches employed in many of these investigations are open to criticism. It is possible to recruit individuals from the most secluded villages or from the patient registries of medical geneticists, but this will result in biased sampling, which will skew scientific findings. In reality, researchers have attempted to avoid sampling people who they perceive to be of ‘non-Roma’ or mixed heritage using a variety of ways in the past10, including genetic testing. In the present day, some researchers eliminate individual data sets if an examination reveals that they include a mixture of ancestry. This may be useful for some research issues pertaining to a certain population in certain circumstances. However, similar information is frequently used to support generalizations about all European Roma people.
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