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New 23andMe Crowd-Sourced Treatment Reviews Pose Potential Health Risks, Critics Say

Some medical professionals are concerned about a new feature on 23andMe’s website, which allows users to share their experience being treated for ADHD, depression, or other common health conditions.




May 22, 2018

Genetic testing company 23andMe announced a new feature last month that would allow users with ADHD, depression, or other common medical conditions to discuss which treatments did and didn’t work for them. The company wants to make better use of the vast troves of health and genetic information it currently holds, a representative said — but medical professionals fear the feature could create more problems than it solves.

The initiative, which was rolled out in late April, consists of 18 “Condition Pages,” which have generated more than 30,000 submissions from users sharing their experience with medications — including antidepressants and ADHD medications — as well as non-medical treatments, like exercise or cognitive behavioral therapy. As more reviews come in, users can (in theory) see which treatments are effective or not effective for a majority of users, the company said in a blog post.

“This kind of crowd-sourced tool allows individuals with say, depression, to see what other customers say is effective or not effective in treating the condition,” the blog post said. “This offers people a different kind of information than they could get simply by doing a Google search, because it comes from others like them living with the same conditions.”

Some medical experts, however, are worried that the Condition Pages could lead to people forgoing treatment or relying too much on unverified medical advice.

“What works for one person doesn’t always work for another,” said Nancy Liu, an assistant clinical professor of clinical psychology at the University of California, Berkeley, in an interview with Business Insider. “Disorders aren’t like that.”

The brand authority of 23andMe, she said, may lead some users to assume that the content has been vetted by a doctor — despite a disclaimer that calls the content “preliminary” and “for informational purposes only” — or lead them to eschew certain “low-ranked” treatments. But the nature of healthcare — particularly mental health care — means that adequate treatment may require more “fine-grained detail” than this kind of tool can provide, Liu said.

“[The] model brings up some real interpretation concerns,” agreed Kayte Spector-Bagdady, a bioethicist at the University of Michigan, in an interview with Wired. “If I say I have depression and all I ever tried was Zoloft and I had moderate improvement, it doesn’t mean Zoloft was better for me than exercise or Wellbutrin.” But by assigning treatments an “effectiveness” rating and comparing them to others based on potentially biased, anecdotal data, “It’s hard for any individual consumer to understand what this information means for them,” she said.

The company did not consult with any medical professionals before releasing the tool, said Jessie Inchauspe, the product lead for 23andMe’s condition pages. But customer enthusiasm has been high so far, she said, and plans are in motion to expand the tool to other medical conditions in the coming months.

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