THE BLOG
10/25/2008 05:12 am ET Updated Nov 17, 2011

The Patient Empowerment Revolution

Even in the midst of one of the most significant economic shifts this country has seen since the Great Depression, Sergey Brin's disclosure last week that he carries a genetic mutation increasing his risk for Parkinson's disease managed to put the genetics-driven revolution in health care back into the headlines.

Certainly it's not news that technologies to probe our genetic and biochemical make-up are becoming more sophisticated, affordable and accessible. But paired with Internet-based direct-to-consumer services, they are now starting to produce information that feels increasingly relevant to our everyday lives as individuals, health care consumers, and funders (through our tax dollars) of the U.S. government's biomedical research machine.

It's still easy -- both for the scientists producing this work, and for the rest of us observing from the sidelines -- to become paralyzed by both the amount of information that's emerging and our ability to understand its broader relevance. Researchers produce massive amounts of data, and interpretation of this data remains challenging. Often, findings that make a splash are based on small sample sizes, and their greater applicability is therefore debatable.

Yet even with these complexities, each new report of a disease-implicated gene leaves many of us with an uneasy sense of waiting for the other shoe to drop. Brin's revelation, which set off a flurry of new writing on the role of genetics in PD, probably left many people surprised. He's in his 30s, there's nothing he can do currently to lower his risk -- why would he want to know? After all, at this point, for Parkinson's disease and many other diseases, the relevance of genetics information to disease management is nil, and no new therapies have been developed that can treat or prevent the disease once a risk factor has been identified.

But when I look to the future -- say even just five years ahead -- I'm convinced that more and more of us will be following Brin's lead. As technology improves and costs decrease, it's possible to envision a situation where we each carry our genetic profile around with us as we proceed through life -- using it as a new lens to assess risks and prevention/treatment options, and considering it seriously in the choices we make.

But beyond technology advances, I'm excited because I see that a bigger movement -- patient empowerment -- is driving this revolution. Around the globe, people are waking up to a newfound ability to take ownership of their medical futures. That means not only paying attention to scientific discoveries in real time and making efforts to understand what those findings actually mean, but rethinking our individual impact in bringing these discoveries about. Our Foundation is working on a number of different fronts to harness the power of the Internet for gathering patient data in nontraditional - yet scientifically valid - ways. We want to work toward answers to questions like: How can links between our daily lives and our genetic profiles build scientific understanding of health, disease, and ultimately contribute to the development of new therapies (including participating in clinical trials)? How can individuals' feedback be delivered back to drug companies more effectively - so that they have a better understanding of how their medicines are being used, what's working and what's not?

This empowerment carries over to philanthropic choices as well. How -- if at all -- would donors change their involvement if they knew they had a personal stake in the outcomes of their charitable gifts? What sort of accountability would they expect from the recipients of their contributions? What might all of us ask of our government in terms of ensuring that our tax dollars support a medical research enterprise that can drive us toward cures?

While information can be paralyzing, it can also be transforming. As individuals take more interest in their genetic information, and technology becomes increasingly accessible, the way we conduct research will fundamentally change. It's essential for anyone who cares about medical research and health care to begin thinking about the world a few years from now -- not just the world today.