He now lives in Uganda, where he is involved with a local pharmaceutical company (and where same-sex relationships are currently illegal). Last year he was approached by Alain Coletta, a Belgian who had recently founded GenePlaza to be a marketplace where people could learn more about their DNA than what 23andMe or Ancestry would tell them. Pitched as infotainment, the site sells some ethically and scientifically dubious apps predicting, among other things, intelligence, math prowess, and depression. In the beginning, GenePlaza built most of these apps itself. But the company was looking to expand, and Coletta wanted Bellenson to help.
He says that, at first, he blew it off—until he read about Neale’s study. He told Coletta he wanted to make an app based on its findings. “I couldn’t think of any louder gong I could ring to say ‘Joel’s back.’”
When Vitti saw the app, he tweeted it out, tagging Neale and Ganna along with the Broad Institute. “I didn’t know whether to say it’s worse than we thought, or this is exactly what we told y’all was going to happen,” he says. He waited a few days, but Neale and Ganna didn’t respond. So Vitti, who by now had left the Broad and was working at genomics software company Seven Bridges, started an online petition to pressure GenePlaza to take down the app. Within a week, 1,400 people had signed it, as The New Scientist reported.
Neale says he and his coauthors were still discussing a course of action when Vitti launched his petition. He was tempted to ignore it, in the hopes it would go away. But as reporters began contacting Neale and his colleagues, they decided to write a letter to GenePlaza. Sent on October 14, it called the app a “gross and dangerous mischaracterization” of their work and urged the company to take it down.
At first, Coletta and Bellenson held firm. They informed Neale they had made some changes, including adding a second disclaimer that said “This app does NOT predict same sex attraction.” And they moved the majority of Bellenson’s essay behind the app’s paywall. But the app was still up a few days later, when Neale and Ganna flew to Houston for the 2019 meeting of the American Society of Human Genetics. On the opening day of the conference, news reports revealed that Ugandan politicians were moving to reintroduce a bill that would make gay sex punishable by death.
Again, Ganna took the stage. This time the topic wasn’t same-sex attraction but, rather, a newer genome-wide association project. Afterward, he took questions. The first one came from a human geneticist named Nancy Parmalee. She felt she hadn’t yet heard a satisfactory answer for why Ganna’s team had pursued the work given its potential to do harm. Parmalee argued that the creation of the GenePlaza app was an entirely predictable outcome that they hadn’t managed to prevent. “In light of this,” she asked, “do you still think it was ethical to publish the study?” A few people broke into applause. One man in the back of the room yelled out, “Not here!”
Ganna tried to deflect, saying he was there to talk about a different project. Parmalee pressed him, saying she felt that a forum of his peers was an appropriate place for him to respond to criticism of such a high profile paper. He declined to say anything more and the moderator moved on to the next question.
A few days later, GenePlaza quietly caved. On October 24, it changed the app’s name to “166 Shades of Grey” and removed the ability to purchase it, before scrubbing it from the site altogether, as Nature reported. According to Coletta, the impetus was the unjust portrayal of the product as a predictive and dangerous test with ties to Uganda. Coletta says that, in reality, the app was never sold to anyone in Uganda. “We would like to offer our most sincere apologies, as it was never our intention to offend anyone,” he added. “We clearly misjudged how sensitive this issue is.”
