The patients will sign Mr. Wilbanks's consent form, enabling them to share their medical information with the professional scientists attending the next Sage conference next year.

WSJ: Citizen Scientists Take On the Health Establishment

"To help people like my sisters, there needs to be a large enough sample of people who contribute genomic information so we can draw statistically significant inferences, " says Mr. Wilbanks.

WSJ: Citizen Scientists Take On the Health Establishment

One participant was John Wilbanks, who earned a degree in philosophy from Tulane and went on to run Science Commons, which focuses on getting scientists to collaborate by signing agreements to exchange research data.

WSJ: Citizen Scientists Take On the Health Establishment