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Own Your DNA

Having your genome sequenced doesn’t always mean you have full access to the data.
February 23, 2016

We’ve long been promised the chance to have our genomes sequenced at a reasonable price, and now we’re finally at the point where companies worldwide are launching large-scale sequencing services at prices likely to attract consumers.

But once you’ve paid to have your genome sequenced, will you have full, downloadable access to it?

Greg Lennon

The general principle would seem to be simple: you have a basic right to the data derived from your own body. Many genome pioneers assumed that principle was obvious when they sought and received public support for the Human Genome Project. Since then, entities ranging from the U.S. Food and Drug Administration to the White House have reinforced the idea that people should have access to their own genomic data.

And yet not everybody seems ready to line up behind it. There are now companies as well as large-scale government projects that either are blocking total downloadable access or appear to be wavering on access in the future. They range from well-known government projects compiling thousands of genomes to smaller companies that are promising to set up an app ecosystem where customers get bits and pieces of their genomes upon request (see “DNA App Store”).

I think this is a questionable path to take, and here are a few reasons why:

For one, errors are bound to occur with sequencing, and letting customers have full access to their data allows them to compare data generated at different times or by other means or other labs.

Second, allowing the customer to download the data can help sequencing companies avoid liability, since they can’t be said to have prevented a user from learning about an important variation.

Third, having access to your data means you can share it—with a family member, a health-care provider, a genetic counselor, a citizen science group, a patient group, or a research group. Pooling data in this way is hugely important in large-scale genomic studies.

Fourth, you can transport it as you wish. What we know today about our genomes pales in comparison with what we’ll know in the future. As we discover new associations for variants, our genomes become more meaningful. There will never be only one interpretation of a genome, so it’s important to be able to download and digitally transport it if you feel you need a second or third opinion.

We need to assert the right to our DNA data now, before any bad precedent is set in the other direction. That data will become even more valuable and important as genome sequencing becomes ever more widespread.

Greg Lennon, who has over 25 years of experience as a human genome scientist, is the cofounder of SNPedia and Promethease.

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