“How Earnest Research Into Gay Genetics Went Wrong”:
When a well-intentioned study led to a dubious DNA test for same-sex attraction, it exposed the need for safeguards on research in the age of big genetic data.
Does our sexuality have any ties to our genetics? In early 2017, Andrea Ganna approached his boss Ben Neale with the question. Neale, one of the top geneticists in the country, helped develop software a decade earlier that made it easier for scientists to study large amounts of genetic data that could determine things such as a person’s risk for heart disease or diabetes based on their genetics. Now, Ganna wanted to take advantage of the UK Biobank’s recent availability to researchers by studying the origins of being gay or straight from a data set of 500,000 British citizens.
Neale had a problem with this inquiry. As a homosexual man, he was worried that “such research could be misconducted or wielded to advance hateful agendas”, but at the same time a clearer image of the science of homosexuality could possibly destigmatize it. Neale decided to team up with geneticist Brendan Zietsch and his colleagues with the hopes of adding “expertise [and] caution to such a project”.
Despite Neale’s diligent preparations, such as involving LGBTQ+ groups and trying to represent a variety of different perspectives, he was not prepared for what was to come. Not only did scientists from his home institution challenge the values and ethics of his work, but also for a company exploited his findings and sold them to an app advertising itself to predict someone’s sexual attraction. This may not seem like a big deal to some, but the article poses some scenarios as more people have their DNA tested at younger ages, saying “imagine the app getting passed around a middle school slumber party and stigmatizing results getting posted to social media. Or being used to screen applicants looking to rent an apartment or buy a condo (which would be perfectly legal under current US federal law and prohibited in only 22 states). In places with fewer civil rights protections, it’s even easier to see how such a tool could be wielded as an instrument of oppression. A state could surreptitiously collect DNA in order to persecute LGBTQ+ people, similar to how China has used genetic information to identify and imprison more than a million Uighurs, an ethnic Muslim minority in China.” Oppression and segregation already occur in our world today and has existed for hundreds of years. The fear is that allowing this to happen can cause more discrimination based on something you can not control: your genetics.
Luckily, the app was taken down due to public backlash. Nevertheless, its existence still raises concern at how easy it is to obtain vast amounts of genetic data and how it can be manipulated into something of nightmares. This ordeal revealed that the structures in place to protect against this sort of thing are extremely weak and need modifications. It is key that we “figure out how to balance scientific freedom and progress with the risk of genetic discrimination”.
Soon after, Neale asked Zietsch to collaborate on a project about the genetics of same-sex behavior. Their data came from the UK Biobank and 23andMe, who had been doing its own research on human sexuality since 2012. Even though this research is with human subjects, no ethics review is required because the data does not include identifying details. In this study, the researchers such as Neale were cautious and registered with the Open Science Framework so any member of the public could see what they were working on and had workshops in London with a group called Sense about Science to “hear the perspectives and potential concerns of a handful of local LGBTQ+ advocacy groups”. One of the largest concerns witht he study coming out of the workshops was its focus on finding gay genes and not finding genetic links to sexuality more broadly. Neale wanted to specify that “the exercise was less about getting permission on LGBTQ+ buy-in for the research than about charting a responsible way to share its conclusions”.
Neale’s team used genome-wide association to detect genetic variants in people who had at least one same-sex encounter and compared them to those with no same-sex encounters(specifically heterosexual). From this, five variants were found to significantly associate with same-sex sex. It also found more common variants that contribute between 8 and 25 percent of the variance in a population’s sexual behavior. It confirmed that being gay has a genetic component, but also suggested that a single gene didn’t exist for being gay. The article articulates that “more likely there [are] thousands, many not discovered, and that environment was always going to also play a role”. For now, individual-level prediction is impossible, as Neale’s team found no correlation when they tried to compare genetic markers found to predict how people in unrelated data sets reported their sexual behavior compared to the individual.
At the presentation of their findings, Ganna showed the overlap between the genes they found in same-sex encounters and those linked to mental health conditions, suggesting that genetics in fact caused mental suffering to those who live in deeply homophobic societies. This is not surprising, as some mental health conditions are more prevalent in LGBTQ+ communities. People who attended this presentation, specifically Joe Vitti, worried this sort of study would lead to something of dystopian horrors like embryo screening and diagnosis of sexual orientation. Neale worked with Vitti and his associates to take out and modify parts of the paper that could be misinterpreted, but Neale said that ultimately, his findings will not predict if someone is going to be gay or not, he only found variants contributing to homosexuality and could not identify on an individual basis.
Overall, it is time to re explore existing ethical frameworks to further their protection over people who aren’t the subjects of research themselves, but are affected by its outcomes. Neale agrees with this after a company called GenePlaza offered to run people’s DNA and identify if they are gay or not for $5.50. Neale also worries about crossing a line into scientific censorship, saying “we should not mix up trying to understand and describe the world to the best of our ability with questions of what we should and should not do to people.”