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Getting Your Microbes Analyzed Raises Big Privacy Issues

Publication Date: 
November 05, 2013
Source: 
National Public Radio - Morning Edition
Author: 
Rob Stein

Professor Hank Greely is quoted by National Public Radio on the consequences of individuals' choices to test their microbiomes. 

After spending months working on a series of stories about the trillions of friendly microbes that live in and on our bodies, I decided it might be interesting to explore my own microbiome.

So I pulled out my credit card and paid the $99 needed to sign up for the American Gut Project, one of a couple of "citizen science" or crowdsourced microbiome 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.

For one thing, volunteers could end up finding out really scary-sounding things they never expected, he said.

"I don't know how likely it is, but we could say by looking at Rob Stein's microbiome that Rob is going to die of cancer in the next three years," said Greely. "That could upset Rob Stein, and his friends and his admirers, of whom there are many, no doubt."

Beyond that, Greely said, such projects also raise questions about privacy.

"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.