Estonia, a former Soviet territory nestled in the Baltic region between Latvia and Russia, has become the first nation to provide state-sponsored genetic testing and advice—to 100,000 of its 1.3 million residents. Government knowledge of citizens’ DNA architecture may sound like a scary prospect—but it’s a complicated issue.
“I think it’s an ambitious effort,” said Laura Hercher, Director of Research in Human Genetics at Sarah Lawrence College and co-founder of The DNA Exchange.
Most state biobank initiatives aggregate data anonymously for medical research. This is what sets the Estonian program apart: DNA donors, in this case, elect to receive certain kinds of information about their genetic makeup.
After a participant’s DNA is analyzed for more than 600,000 DNA variants that have been linked to both common and rare diseases, she can ask to find out about the risks of breast cancer—but request not to see information about rare disorders she could transmit to future children.
“There’s a lot of potential for giving people both complicated information, hard-to-understand information, or wrong information if you give out things that we don’t know well, and that we haven’t studied not only among sick people but also among healthy people,” [said Hercher].
The Estonian government—as well as other governments faced with the same decisions—will have to grapple with whether or not public health concerns outweigh medical advances.
Read full, original post: Would You Give the Government Your Genome?