An unlikely pair of large foundations—one in media innovation, another in health care—threw some serious weight behind a project to advance health care and biology research with a public storage bank of individuals’ genomic, health, and personal data.
The Personal Genome Project (PGP), a creation of Harvard geneticist George Church, seeks to create a public collection of the medical, demographic, and genetic information of thousands of volunteers, free for any researcher to analyze at will. Think of it like 23andMe, only crowdsourced. The idea has landed two sizable grants, one from the John S. and James L. Knight Foundation and another from Robert Wood Johnson Foundation, totaling more than $1 million in funding.
Sound a little crazy? Well, it’s meant to cut against common assumptions about health information privacy. The compilation of thousands of humans’ genomic data, along with personal and health data gathered over a long period, could be staggeringly powerful for researchers and health care providers. Stymied by the challenge of keeping all that data safe, secure, and anonymous, the Personal Genome Project instead decided to gather volunteers willing to bare all. They have up to 3,000 people who have consented to public sharing.
As the pool grows, researchers will be able to access the data and analyze it or expand on it, so long as the results go back into the project. Genetic information in isolation isn’t all that powerful, but in large numbers, and combined with personal and health data over time, it builds a pool that is the equivalent of a massive longitudinal study.
The power of the idea is demonstrated by the funders now backing it. The PGP was one of seven winners of the latest Knight News Challenge, a recurring contest related to the use of technology in news and information. The latest challenge was to “unlock the power of health data.” PGP’s proposal for “developing an online portal to connect people who are willing to share their personal health information with researchers to advance medical breakthroughs” nabbed them $500,000 from Knight.
The Robert Wood Johnson Foundation, which was a partner in the latest Knight News Challenge, seems to have been impressed enough to grant the organization another $507,800:
To explore (1) new collaborative models of patients, researchers, practitioners, and funders, and (2) the platforms and tools being created for shared data and open science, and to demonstrate the value of the models, platforms, and tools in accelerating medical discovery.
This is fairly edgy stuff for RWJF, which usually leans toward health care policy work, lowering costs, improving delivery, and wellness. But they are always looking for breakthrough improvements, and you can only imagine what a wide open database of health records could do for how we take care of patients.
Privacy of health data has always been a paramount concern for those working in clinical research and medicine. At least RWJF and Knight are anxious to see what happens when you throw it out the window.