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Web Tools Afford Patients Active Role in Research

Sarah Arnquist, reporting for The New York Times, tells a moving personal story that captures the hope permeating some of the projects now breaking down barriers between patients, research participants, and scientists.

Her hook is the quest of Amy Farber, who found out in 2005 that she had LAM, a rare and fatal disease affecting women that damages respiration and destroys a variety of bodily systems over time. Farber teamed up with George Demitri of Harvard Medical School and Frank Moss, director of the MIT Media Lab and the lab’s New Media Medicine group.

The result was LAMsight, a project that brings together patients from around the world who share knowledge and experience with doctors and researchers who can sift through that information to improve their understanding of the disease. Some of the people with the most knowledge of LAM are of course the patients, and the network can facilitate their access to clinical trials as treatments evolve. The effort brings patients in as collaborators in health research:

Patients’ everyday experiences in living with an illness are an enormous source of untapped data, [Moss] said; aggregated, those data could generate new hypotheses and avenues for research. “We’re really turning patients into scientists and changing the balance of power between clinicians and scientists and patients,” he said.

The site allows participants to remain entirely anonymous to other users if they so choose, but the article of course raises the issue of privacy concerns that surround many new web-enabled health projects, as well as the quality of data provided by small self-selecting communities.

In the case of LAMsight, participants are making an active decision to become a research participant. But Arnquist also points to commercial ventures such as 23andMe and PatientsLikeMe that are actively recruiting consumers to share genetic and health information that populates databases that may also prove useful for studying an array of health issues.

Stanford bioethicist Sandra Lee, who recently spoke with SP about direct-to-consumer genetic testing, discussed the policy tensions such DTC services create. On the one hand, they allow people who want to actively participate in research (or become scientists, as Moss might suggest) to do so—an empowering and potentially beneficial engagement with their health. On the other hand, some of those people may become unwitting research subjects, and the genetic information they share, Lee notes, is not just about them, but by virtue of familial bonds, is also about others who might not have consented to share that information with others.

The point of course is not to restrict health or genetic information sharing unnecessarily, but to finesse the balance for individual projects; protect privacy, safety, and autonomy; and create more hope for more patients.

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