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To the Editor:

As reported by the New York Times1, US President Obama recently told a gathering of scientists, policymakers and patient advocates that individuals should own the data that comes from studying their DNA. He observed that “if somebody does a test on me or my genes…that’s mine.” Although, at first blush, the idea that we should own our data has an intuitive appeal, it contradicts a century of US legal precedent and, if put into effect, could have serious ramifications for biomedical research.

 

The President’s comments were made during a White House briefing on the Precision Medicine Initiative (PMI), an ambitious new federal program that will fund the analysis of DNA from more than a million American volunteers. If the PMI gets off the ground, it will be the largest study of its kind ever conducted, and it could revolutionize our understanding of human disease and physiology.

 

To achieve its goals, the PMI will need to overcome significant fiscal, scientific and data-management hurdles. But perhaps the greatest challenge for this and other population-wide genetic studies will be persuading large numbers of individuals to contribute their DNA to the cause. Unlike drug trials and other experimental medical procedures, the cheek swabs and other minimally invasive techniques used to collect this DNA present no physical risk or harm. Nevertheless, there is a general public unease surrounding research using human DNA.

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Nature Biotechnology

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