Healthcare Data Debate: Privacy vs. Public Good

"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.

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Re: Like the NSA of healthcare
  • 6/23/2014 7:56:09 AM

Getting that 10% health database is going to be a pretty tough task I would guess. But, once done I'd think it's certainly going to be very very useful. It is a slipery slope geting all that data from us, and worrying if at sometime, regulations will change or data will be stolen that could identify individual data to our detriment. It is a matter of trust vs. usefulness to society in general.

Re: Like the NSA of healthcare
  • 6/22/2014 10:29:14 PM

In re "...isn't all this data stripped of personal identifiers?"

Much of it is. But all? Do some sniffing and start ferreting out some IP addresses and pretty soon you've got exactly the sort of personal hacking that triggered some fearful reactions. This wouldn't cost a lot for even the mildly craven to execute, especially if it meant saving an insurance company gobs of money.

Re: Like the NSA of healthcare
  • 6/22/2014 9:54:52 PM

@Terry, to play devil's advocate here, isn't all this data stripped of personal identifiers? They vacuum it up, mush it all together, and it ceases to be your data ... your just one set of anonymous data points among millions.

Like the NSA of healthcare
  • 6/20/2014 2:05:41 PM

it's all well and good to debate the merits and the possibility of private healthcare data collection. But as one poster has implied, the genie's out of the bottle here. There's too much information available -- legally or not, ethically or not -- for the insurance companies not to be hoovering up as much of it as they can for predictive purposes or premium forecasting and the like. Legal? Not if it stays off the books or at arm's length to provide some thin veil of protection and ability to plausibly disavow ("Rogue employees caught and dismissed...").


Re: Fall deadline for the public good
  • 6/20/2014 1:58:33 PM

What I notice in these debates about the sharing of personal healthcare data is that I'm a lot happier about -- and will fervently support -- other people sharing their data.

My own medical records? Keep your greasy mitts off 'em. I might agree to some highly select sharing, but sorry, Congress and insurance giants and managed care providers and drug makers. Back it off!

"Help the children," indeed. This is truly the last resort of charlatans and cynics.

Worse than DNA scrounging...
  • 6/20/2014 12:56:45 PM

The one that really creeps me out -- if the forensics shows on The Discovery Channel can be believed -- is "brain fingerprinting," where they have the suspect look at certain images flashed on the screen, while the electrodes pick up waves, and if he looks at something incriminating (e.g., a picture of a person he killed), a signal of recognition will show up, which only the killer would know, and which you can't consciously suppress -- it's like a much better lie detector.  Obviously, if you can be forced to submit to such a test and it's admissable in court, the prohibition against self-incrimination is history. Even if it's 100% reliable and can be used to identify a criminal who can't be identified any other way, it's still pretty discouraging to think that this is where we're going....

Re: Fall deadline for the public good
  • 6/19/2014 8:36:00 PM

It is a little daunting. For example we leave our DNA everwhere when we take a sip of something, or even just by being near something. Forensic Uses of Shed DNA | Learn Science at Scitable . This can be very uselful for solving crimes, it also makes it easy to put the DNA there in the first place.  One Australian state, Victoria, has taken steps to ban what it is calling "covert DNA sampling. This ban occured over 10 years ago, which I can only imagine how far the technology has progressed since then. 


Re: Fall deadline for the public good
  • 6/19/2014 8:13:12 PM

Seth, history does not promote trust in government and the corporate world though recent by comparison is building a comparable legacy for overreaching mandates and boundaries. Trust we ultimately must, but reluctantly. I share your sentiments.

Re: Fall deadline for the public good
  • 6/19/2014 7:54:59 PM

I'm very wary of having my DNA on file somewhere because of how it may be used.

I always say, when it comes to big government, yes it probally will never do anything with your DNA, unless it determines that you are in the way somehow.

However, if it comes between saving my life and dying, well most likely I'm going to chose life.


Re: Fall deadline for the public good
  • 6/18/2014 10:52:18 PM

If we sum the argument to trust, then failure is the result. Time and again, profits have driven corporate ethics. Once data is released, cannot be retrieved. Data is the genie that cannot be put back in the bottle. The greater good is clear in this case, but the uneasiness is understandable.

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