From the New York Times science section:
An op-ed in Nature calls for higher ethical standards in the usage and analysis of genetic information from the Romani, a marginalized group in Europe.
By Sabrina Imbler
Nov. 17, 2021
… For five years, a team of researchers in Germany and the United Kingdom pored over more than 450 papers that used the DNA of Roma people to understand how geneticists and other scholars obtained, interpreted and shared that genetic information. Their analysis, published Wednesday in an op-ed in the journal Nature, revealed many instances of clear misuse or questionable ethics.
In 1981, when scientists in Hungary sampled the blood of Roma people incarcerated in Hungarian prisons, they classified prisoners as Romani based solely on their appearance, which the authors of the new paper argue is unscientific.
I’m shocked, shocked that scientists in Communist Hungary in 1981 used phenotype rather than genotype to select Roma criminals for a study. (I notice that a lot of people these days take it as an article of faith that statistical disparities must be due to poor selection techniques.)
But now it’s bad when they do use DNA:
In 1993, another group sampling Romani DNA concluded that there were three distinct ethnic groups in the country, drawing a line between “the genuine Hungarian ethnical groups” and “Jews” and “Gypsies” — a research premise the authors of the new paper argue was racist. In the 2000s, papers on the genetics of Roma people still referred to the group with the outdated term “Gypsy,” which is considered a slur,
Until enough years go by that sufficient people recognize “Romani” as those people who scammed your mom out of \$1300 (it already appears that “Roma” is perhaps on the Naughty List), at which point using “Romani” will be racist and the sensitive will instead be referring to them as “People of Gypsitude.”
or with pejorative terms such as “inbred” or “consanguineous.”
Consanguineous means practicing cousin marriage, which Roma do to a fairly high extent, although not as much as in Pakistan (which is likely more or less where they come from). According to one study, cousin marriage has become more common among Romani. They already have plenty of trouble with dyslexia, so adding genetic defects through inbreeding is not wise.
“It’s just horrifying,” said Ethel Brooks, a Romani scholar and chair of the department of women’s, gender and sexuality studies at Rutgers University in New Jersey. “But of course, it’s all things we’ve known and suspected.”
The analysis spanned papers published between 1921 and 2021, most of which were published in the last 30 years. The earlier papers included “so many shocking surprises,” said Veronika Lipphardt, a science historian at the University of Freiburg, Germany, such as the samples taken from incarcerated Roma people and many instances of racist language.
“Many didn’t believe us,” Dr. Lipphardt said, “because it was simply so hard to believe” that such practices were “ongoing.”
… In 2015, the Slovakian government defended its practice of segregating Roma children in schools, falsely citing “mild mental disabilities” tied to “high levels of inbreeding” in Romani communities.
And that’s false because?
… Mihai Surdu, a visiting sociologist at the University of Freiburg and an author on the paper, conceptualized the project when he was writing a book on the Roma people. While searching for publications with the words “Roma” or “Gypsies” in the titles, Dr. Surdu found what seemed like an outsized number of studies on Roma DNA — nearly 20 papers.
When Dr. Surdu wrote to Dr. Lipphardt in 2012 about this phenomenon, he was unsure if it was a fluke. But over the course of their study, the researchers uncovered more than 450 genetic papers with Roma subjects.
Uh-oh, scientific study. That’s bad.
… One 2015 study pointing to Indian origins of the Roma people uploaded their amassed DNA data set to two public databases that law enforcement agencies across the world use for genetic references to solve crimes, a purpose to which the original participants likely did not consent.
Similarly, the Golden State Killer didn’t consent to his distant cousins uploading their genome to public databases.
Even though much of this DNA was collected decades ago, its presence in public databases poses a present danger 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 has become a crucial and contested tool helping police solve crimes. In YHRD, the national database for Bulgaria lists 52.7 percent of its data sets as “Romani” even though Roma people only make up 4.9 percent of the country’s population. If a minority population is disproportionately represented in a DNA database, this could create bias against “suspect populations,” some scholars argue. Some of these profiles came from population studies where the researchers thanked police forces for collecting the DNA.
It’s almost as if those stereotypes about Roma committing a lot of crimes are true.
Marginalized groups like the Roma people are subject to increased surveillance and policing because of personal, institutional and cultural bias,
Not because they commit crime at increased rates.
said Matthias Wienroth, 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.”
How dare scientists do research when it might get criminals arrested?