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What are the consent and data privacy implications of direct-to-consumer DNA testing?

It seems simple enough.

Provide a little saliva and open up a whole new world of knowledge about yourself. But I’ve had my reservations about doing so for some time. Certainly, not everyone agrees with my privacy concerns about submitting my DNA to large organizations. Looking at me as if I’d donned three heads, someone once asked, “Just what do you think they’re going to do with it?”

Well, hopefully nothing more than the intent for which it was submitted. “Hopefully” being the operative word.

Now, don’t get me wrong. I certainly support progress in healthcare and other fields through the use of data. In the digital world we live in, that train has already left the station.

But I think it’s imperative that those providing personal data through any means have a clear understanding of the implications of doing so. As consumers, we have a right to both data privacy and data ownership—if that’s what we want. And we also have a responsibility to understand how that data may be used once we sign it over to others.

Unfortunately, much of the consent that consumers provide when they click that little box of agreement may not be fully informed at all—which is why we need to be aware of the context and the bigger conversations that are taking place around these dynamics.

In this article for The Hastings CenterJunaid Nabi, MD, MPH provides his expert insight to do exactly that.

Addressing Questions About DTC Genetic Tests and Privacy

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