Institute For The Future

Should You Give Away Your Genome?

A couple months ago, a broad consortium of bloggers, patients and companies endorsed a declaration of health data privacy aimed at ensuring individual privacy and control over health data. The impulse to want to control personal genetic data makes sense--and it's one of several reasons that the declaration was so widely endorsed so quickly. But according to Katrina Voss, our instincts to protect our genetic data may be misguided, and we should instead offer up our data to researchers to help propel the next generation of medical research.

While acknowledging that "some caution is understandable" over genetic data privacy, our concerns mostly stem from:

 

[A] fundamental delusion of self-importance: we assume that someone will find our individual genome interesting enough to hack into it and exploit it. In most cases, this would be a waste of time: our genetic secrets are rarely worth the cost of obtaining them clandestinely.

 

Instead, she advocates that personal genetics should move the way of Harvard's Personal Genome Project and not only make genetic data publicly available but link that data to lifestyle data and medical history. She argues that:

 

The PGP's open approach is pragmatic: society has much to gain from unrestricted access to genome sequences, medical histories and phenotypic data. For example, only by knowing how traits, experience and genes interact can we discover how both environmental factors and DNA affect disease.

 

It's an interesting argument--and I heard the same perspective voiced at our Chicago Open Meeting--and it stems from applying some basic statistical logic to "a fundamental delusion of self-importance." It's impossible to draw out meaningful conclusions from genetic data without genetic samples from many thousands of people. Isolated by itself, your genome is a meaningless set of noise.

At the same time, it is your genome. And whether one believes that it is a delusion of self-importance or a well-placed concern of privacy, it's unlikely that most early genetic test adopters will be as enthusiastic as Voss about publicly offering up their whole medical histories to open science databases. It seems more realistic to think that, over the next decade, privacy advocates and openness advocates will experiment with developing tools that facilitate research while ensuring privacy.