The Center for Democracy and Technology has released a new policy paper (pdf), “Rethinking the Role of Consent in Protecting Health Information Privacy.” It’s an interesting paper with thoughtful arguments. I don’t agree with parts of the paper, but I urge you to read it and consider the issue. More analysis and testimony about Health Information Technology privacy is available at the Senate Judiciary Committee’s page on today’s hearing about the issue. From CDT’s paper:
Although new innovations in health information sharing hold great promise for m ore effective and efficient care, they also amplify privacy risks. A system that makes greater volumes of information available more efficiently to improve care will be an attractive target for those who seek personal health information for commercial gain or inappropriate purposes. A significant majority of the public has already expressed concern about the privacy risks associated with health IT, and policymakers will find little public support for building e-healthy systems if those concerns are not addressed.
It is essential that a policy framework enable the application of information technology for the improvement of health care while allowing people to make meaningful choices about the sharing of their health information. Some advocates have argued that requiring patient consent for every exchange within health care is the solution to the privacy conundrum. […]
As explained in more detail below, we now believe that overreliance on consent leads to weak privacy protection. Instead of consent for each and every use, e-health systems should be governed by a comprehensive framework of rules, based on fair information practices, that fill the gaps in existing law, clearly set forth who can access health information and for what purposes, and are vigorously enforced. Patient consent is one component of this comprehensive set of protections, and the second half of the paper suggests in which circumstances patients must be provided with more meaningful opportunities to make informed choices about the sharing of their personal health information on-line.