Rodriguez and Erlich emphasized both the importance of sharing public data and the need for full disclosure to research participants.
"We want to be open and transparent with the participants. We want to tell them the benefits -- and I'm not diminishing the benefits," Erlich said. "We want to tell them the risks. And we are very open and clear about the risks: You might be identified. It's about autonomy. It's about empowering these people who take this and form their decision."
Rodriguez said the study highlights the need to stay on top of privacy issues.
"There are privacy protections in place for participants and we just need to make sure that those remain up to date with the technology and methods and information available to the public, so that they remain as robust as we want them to be and the public wants them to be," she said.
The U.S. National Human Genome Research Institute has more about genetic testing.
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