Why You Should Worry About The Privatization Of Genetic Data

Privatized. DNA image via www.shutterstock.com.

Kristy Hamilton 08 Sep 2016, 22:46

The Conversation

President Obama has promised to support a bold future for medicine where diagnostic testing and treatments aren’t just what’s best for most people – they’re what’s best for you.

This “precision medicine” takes individual variations in our genes and environments into account. Getting there will require genetic and health data from as many people as possible to uncover the relationship between genetic differences and medical outcomes.

This is why Obama’s Precision Medicine Initiative (PMI) includes the creation of a million-person research cohort. Participants will provide blood and urine samples, share information from their electronic health records and answer questions about health and lifestyle. The hope is that this trove of data will reveal the genetic underpinnings for a variety of diseases, leading to personalized diagnostics and treatments.

It’s a bold goal, and one that private companies have a head start on. For instance, 23andMe, a direct-to-consumer genetic testing company, already has a 1.2 million person genetic database.

But genetic data banks amassed by private companies don’t necessarily have to follow the same regulations regarding access to their data that federally funded researchers do. And a recent proposal to change consent regulations for human research may make it cheaper for private companies to collect and use this data than public ones.

As bioethicists (myself included) have warned, we need to pay attention to concerns about how these private genetic data banks are used and accessed before we enable a system where the future of public genetic research lies in private hands.

Who can access genetic data?

If you go to a clinic or a hospital to have your blood drawn for a diagnostic test or tissue removed, many will keep that biospecimen, and put it or the data derived from it into a “bio-” or “data bank” for future research.

As long as future research with your specimen or associated data doesn’t include any information that links it back to you (like your name), researchers don’t need your consent to do their work (though this may change).

If researchers receive federal funding, they often have to submit their data to a public data bank such as the National Institutes of Health’s dbGaP, which charges other researchers little to nothing to access this data for future work. Open accessibility is also the goal for the PMI Cohort.

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