"Sharing data is essential," Toby Bloom, deputy science director of informatics for the New York Genome Center (NYGC), told a room full of scientists and IT professionals at the Bio-IT World Conference in Boston.
Some of the attendees were engaged in Bloom's presentation; some were bored and flipping through conference materials. However, for Bloom and her organization, the statement is a matter of life or death. The NYGC's mission is to cure diseases and save lives by analyzing and collaborating on DNA research.
Bloom cited the work of the Patient-Centered Outcomes Research Institute (PCORI) -- an advisory board with a $3 billion budget created by Congress as part of Obamacare -- and its endeavors to build a database containing all the health information on nearly 10% of all Americans by the fall of next year.
At a later panel discussion moderated by Bloom, panelists and audience members debated the merits of open data sharing against those of individual privacy.
"Every person in this room is going to be sick in some point of his life," warned Yaniv Erlich, principal investigator for the Whitehead Institute for Biomedical Research. Urging attendees to think of the issue as a matter of "trust versus non-trust," as opposed to "privacy vs. utility," Erlich emphasized that people should trust genetic alliances like his and Bloom's, because sharing genetic information "can advance biomedical research."
Panelist Philip Groth, a business IT partner at Bayer HealthCare, said he's seen surveys where patients are told that donating their genomic information may help their children, and anywhere from 90% to 95% opt in. "Who wouldn't do that?" But he wasn't finished. "If I told you it was going to be used to help insurance companies boost their premiums, how many people would still raise their hands?"
Bloom and other panel members conceded to the scaremongering aspect of their arguments, but Groth evangelized the value of more people sharing their genomic information from both a utility perspective and a privacy perspective.
"To collect more [patient] data and connect it with clinical data obviously makes it more valuable... and especially with the data I've seen typically, you don't need to identify or go down to the individual once you make decisions or discoveries on the population," Groth argued.
Ironically, Erlich -- perhaps the most pro-data-sharing panelist there -- countered Groth's statement by citing research showing that, even with aggregated, anonymized data, "you can still see if a [particular] person was part" of the population.
Still, Erlich was unwavering in his support for open health data sharing. "You can identify me by my genome, but what harm would come?"
Bloom acknowledged that "it's a tradeoff." The PCORI is controversial, and so is this sort of health data sharing generally. Proponents argue that the PCORI will reduce healthcare costs by comparing various treatments' efficacy and focusing resources on treatments deemed the most effective. Critics say that comparative effectiveness research leads to faulty results and healthcare rationing.
However, the panelists offered little meaningful defense on behalf of a social mandate for individual privacy. (Erlich actually characterized individual privacy concerns as a "lack of trust" and a societal "tax.") Instead, they were nearly unanimous in casting it as a problem for legislators -- seemingly in self-absolution.
"We need to educate people about the value of DNA," Erlich argued. But if people are jealously guarding their genomic data, it would seem that they understand that value all too well.