How Earnest Research Into Gay Genetics Went Wrong | WIRED
Un excellent article sur les danger éthiques et sociaux de l’usage sans précaution des données génétiques, notamment les données massives obtenues soit par des actes volontaires (recherche d’ancêtres, et autres) soit au fil d’actes médicaux.
Anonymiser les données ne suffit pas à garantir qu’il n’y aura pas de conséquences fâcheuses pour l’ensemble de la société.
Un très bon papier.
In late spring 2017, Andrea Ganna approached his boss, Ben Neale, with a pitch: He wanted to investigate the genetics of sexuality. Neale hesitated. One of the top geneticists in the country, Neale and his colleagues at the Broad Institute, a pioneering biotech hub in Boston, had a decade earlier developed software that made it much easier for scientists to study the vast amounts of genetic data that were beginning to flood in. It was the kind of tool that helped illuminate a person’s risk of developing, say, heart disease or diabetes. And now, as Ganna was proposing, the approach could be applied to the foundations of behavior, personality, and other social traits that in the past had been difficult to study.
Ganna wanted to pounce on a new opportunity. A giant collection of carefully cataloged genomes, called the UK Biobank, was about to become available to researchers. A scientist could apply and then gain access to data from 500,000 British citizens—the largest public repository of DNA on the planet. To Ganna, the genetic origins of being gay or straight seemed like the kind of blockbuster question that might finally get an answer from a data set of this size.
Neale wasn’t so sure. As a gay man himself, he worried that such research could be misconstrued or wielded to advance hateful agendas. On the other hand, a better understanding of how genetics influences same-sex attraction could also help destigmatize it.
Then Ganna mentioned that another group was already pursuing the question using the UK Biobank: a geneticist named Brendan Zietsch, at the University of Queensland, and his colleagues. In 2008, Zietsch published a study suggesting that the genes straight people shared with their gay twins made them more successful at bedding heterosexual partners. Now he was going to further test this “fecundity hypothesis” with a much more powerful data set. He’d also proposed investigating the genetic associations between sexual orientation and mental health. Thinking his lab could add expertise coupled with caution to such a project, Neale agreed they should try to team up with Zietsch.
“Armed with the knowledge that this research was going to be done, I thought it was important that we try and do it in a way that was responsible and represented a variety of different perspectives,” he says, noting that, because there is so much genetic data to work with these days, collaborations in his field are commonplace “But it was also important to me personally, as a gay man, to get involved.”
From the outset, Neale expected some pushback and misunderstandings. That’s why he involved LGBTQ+ groups along the way, something not technically required for the kind of research he was doing. But he wasn’t prepared for scientists within his home institution to rise up and challenge the value and ethics of his work. And he was even less prepared for a company to exploit the results of the study—just a few weeks after it was published in the journal Science—to sell an app purporting to predict how attracted someone is to the same sex.