How will precision medicine handle privacy concerns moving forward?

Print 04 March 2015
Nicole Oran / MedCity News

The U.S. Food and Drug Administration switched perspectives concerning patient-centric medicine on Feb. 19 when it approved the marketing of genetics testing company 23andMe’s carrier test for Bloom Syndrome – bringing it back to life after previous ethical/technical issues.

Generally speaking, this was great news and demonstrates the FDA’s willingness to adapt, but there are still concerns with data regulation as we move forward in a pro-innovation healthcare culture that is growing exponentially.

The struggle to find balance between providing data for patients but still not turning people into unwilling research subjects for the sake of Big Pharma growth is real, and as Vivek Wadhwa made clear in an article for The Washington Post, there are pluses and minuses that deserve thoughtful analysis:

23andMe has made no secret of its ambition to become an information-services provider to large medical and drug companies. Big Pharma is champing at the bit to obtain as much individual DNA information as possible about large swathes of the populace. This will be a key part of research into what is often called “precision medicine,” a future where treatments will be able to more finely target ailments at a truly individual level.

We lack sufficient safeguards for consumers who supply their DNA data to companies such as 23andMe. Once this information is made public, its privacy is lost forever. Devising and implementing safeguards will require significant discussion and debate, so that needs to begin now. It is encouraging that D.J. Patil, who has just been named the country’s chief data scientist, has named this topic as being amongst his most important tasks.

This is undoubtedly an exciting and inspiring time in personalized health, but it’s also a period where unbridled enthusiasm could have it’s repercussions. Thankfully those in the position to analyze how we move forward have a vested interest.

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