Personal Health Records: Is Unraveling Inevitable?
I look forward to reconnecting with everyone who is attending the health law professors conference in Chicago. My presentation will be applying some of the ideas of Scott Peppet (on self-quantification and unraveling) to personal health records. I found these ideas from Peppet’s post on biometric identification particularly interesting:
The biometric technologies firm Hoyos (previously Global Rainmakers Inc.) recently announced plans to test massive deployment of iris scanners in Leon, Mexico, a city of over a million people. . . . [T]he company’s roll-out strategy is explicitly premised on the unraveling of privacy created by the negative inferences & stigma that will attach to those who choose not to participate. Criminals will automatically be scanned and entered into the database upon conviction. Jeff Carter, Chief Development Officer at Hoyos, expects law abiding citizens to participate as well, however. Some will do so for convenience, he says, and then he expects everyone to follow: “When you get masses of people opting-in, opting out does not help. Opting out actually puts more of a flag on you than just being part of the system. We believe everyone will opt-in.” (For the full interview, see Fast Company’s post on the project.)
I’ve previously looked at the limits of individualist accounts of autonomy in work on pharmaceuticals (here and here), and scholars like Robert Ahdieh are questioning individualism in law & economics generally. As Nic Terry has argued, many of the critiques of CDHC apply to PHRs, and vice versa.
As of a few years ago, “it wasn’t illegal to hire and fire people based on their smoking habits” in 21 states. I think there will be many difficult questions raised in coming years by the growth of medical records of all types, and how many secondary uses of them are permitted. For example, some dating sites will now verify the income and assets of their users. How soon before they (and other certification and evaluation intermediaries) start vouching for health profiles? Does law have a role in these situations? I’ll try to explore these questions, and I’ll post more details about the presentation after getting some feedback.