NPR reports on medical privacy questions concerning ” ‘citizen science’ or crowdsourced microbiome projects.”
Organizers of the American Gut Project are recruiting thousands of people to donate their microbes to science — along with lots of personal information — to help researchers learn more about the trillions of microbes that inhabit the human body. […]
A few weeks later, an envelope arrived in the mail with an instruction sheet and a long two-pronged cotton swab. After spending a week carefully logging the details of everything I ate and drank, I used the swab to collect a fecal sample and mailed it off for analysis.
While I was waiting for the results, I spent some time talking to bioethicists about some concerns I had heard about participating in these projects.
“I think sending pieces of your microbiome in to be analyzed and posted along with your health information is not for the faint of heart,” said Hank Greely, a bioethicist at Stanford University. […]
“If you have privacy concerns at all, you shouldn’t do it,” Greely said.
Here’s why: Volunteers in these projects disclose lots of very personal stuff about their health, their daily habits and their families. It’s all supposed to be kept strictly confidential, but there’s no way to guarantee that these days, Greely said. Revealing any kind of personal health information could cause a variety of problems, including difficulties getting jobs, long-term care insurance or life insurance.
“Those are legitimate concerns,” Greely said.
In addition, while the project is aimed at analyzing the genes of microbes, volunteers’ DNA might end up in the sample and inadvertently become public, he said.