Your Genetic Secrets May Not Be as Safe as... (h for matches. And if the anonymous...)

Your Genetic Secrets May Not Be as Safe as You Think

Date:1/18/2013

h for matches."

And if the anonymous genome specimen donor is related to anyone on the ancestor search site -- voila, the last name appears.

"And it wouldn't have to be their brothers," Erlich said. "We found it could be your second cousin, once removed. It can be even larger than that. It can propagate quite far on your family tree -- this connection between a surname and the Y chromosome."

Women -- who only have X chromosomes and who rarely pass their surnames on through generations -- cannot be directly identified with this method.

Even though researchers had uncovered the last name, another step remained.

"There are tens of thousands of people in the U.S. with [the same] surname," Erlich said. But, he noted that HIPAA [the U.S. Health Insurance Portability and Accountability Act] privacy rules allow participants' ages and state to be posted on research databases.

Once age, state and name are all revealed, he said, the possibilities narrow to about 12 people. Internet search tools and other public information can further allow a user to pinpoint an individual.

"If you look at the genomes of someone, you can see predisposition for certain [medical] conditions, but maybe this is not the most sensitive information," Erlich said. For instance, he noted, evidence of non-paternity within a family could be revealed. Medical insurers aren't allowed to deny coverage based on genetic data, he said, but life insurers are not prevented from doing so.

Laura Lyman Rodriguez, director of the Office of Policy, Communications and Education in the U.S. National Human Genome Research Institute, discussed the balance between protecting privacy and advancing science and health.

"Tightening security or locking down data is not always the best answer," said Rodriguez, who co-wrote an editorial accompanying the study. Genomic databases provide a huge, vastly improved pool of knowledge for scientists everywhere, she said.

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