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Medical Information and Privacy

In a recent TED talk, Daniel Kraft offered some insight into the future of healthcare technology. He ought to know: Daniel is an oncologist, and also a chair of the medicine and neuroscience division of SingularityU.

Although Kraft talks about many advances coming in medical technology, a large number of those advances depend on (or at least become more effective with) crowd-sourced medical information; that is, medical information shared by a large number of users such that the data can be analyzed for patterns. Given the large number of topics Kraft was lecturing about, and the short amount of time that TED allows speakers to talk, it’s unsurprising that Kraft was unable to provide more information about how and to what extent consumers are willing to share their information. Yet, when so much hinges on patient’s willingness to share that information, it seems reasonable to ask whether consumers will participate enough to allow the technologies Kraft is lecturing about to become fully effective.

Privacy and technology often seem at odds with one another, and the conflict is not limited to medical issues. Anecdotally, a few of my friends (still in their 20’s or early 30’s) are unwilling to create even a Facebook profile. They often say that they just don’t want their information so publicly accessible, or that they don’t see the benefit in being so easily discoverable. Although an unwillingness to share basic information seems (to me, anyway) unusual for people my age, older people in their 60’s and 70’s often seem more interested in maintaining their privacy than in being connected through Facebook like sites (although I don’t want to discount the many people that age, or older, who -are- willing to share that sort of information and do participate in the online community.)

The Facebook privacy concerns are an interesting case study in willingness to share information for several reasons. First, Facebook has some 500 million users, indicating that a whole lot of people are willing to share personally identifiable information in a limited way. Second, Facebook has had a lot of backlash for it’s information privacy policy, most recently for its new facial recognition technology. PCWorld recently declared the facial recognition feature “creepy” and “terrifying” but later noted that “Facebook’s new facial recognition feature doesn’t yet work well enough to pose a significant threat to your privacy.” Nonetheless, privacy rights groups, the state of Connecticut, and EU regulators are questioning the legitimacy of the technology.

Although the facial recognition technology debate indicates that people are concerned about their privacy, do these concerns attach to medical information as well? One major gripe about Facebook’s new technology (and many of their previous privacy debacles) is that the privacy settings are often enabled by default, without some sort of explicit opt-in by users (although users can opt-out of Facebook features by hunting through the appropriate security settings.) Healthcare laws in the US would probably require that patients specifically opt-in to sharing their information, suggesting that at least one issue in the Facebook cases does not apply to medical information.

Another gripe is that Facebook’s settings generally, and their facial recognition technology specifically, tie a person to the data; when Facebook automatically tags a picture of you with your name it is explicitly connecting information (the picture) and identity (the name, usually with a link to your profile.) In the case of medical information, whether this is true or not seems to be determined on a case-by-case basis. The website Kraft begins his lecture talking about attached a specific genetic bit of information to Kraft, then matched it up with another person and allowed the two users to contact each other, much like the Facebook auto-tag software. Other information, like the information Kraft is suggesting could be continuously uploaded through wireless nanobots or wearable sensors, could be either tied to a specific person (usefully, if one wants their doctor to be able to monitor their health) or else made anonymous for general use.

Assuming the information is not personally identifiable, some studies have found that people are willing to share their medical information anonymously. It is unclear how willing people are to share personally identifiable information. Because the viability of much future medical technology is dependent on uniquely identifiable information available within at least limited contexts, I’d like to see more studies researching whether the public is, in essence, willing to let this information thrive. Although I hadn’t much thought about sharing medical information before, after some consideration, I don’t think I would mind posting it to the internet, so long as there were some controls in place as to who could access my information. Many of my friends would choose otherwise. Would you be willing to share your medical information if doing so could enable some of the technologies Kraft talks about?

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