Privacy Overkill

Mark Rothstein’s (2010) article seems to focus on the technological adequacy of deidentification procedures and the possibility of harm associated with their failure to guarantee anonymity. The paper, however, is actually an attack on the current practice of minimizing regulatory oversight of deidentified health information and biological specimens. Rothstein concludes that “utilitarian concerns about burdens on research are insufficient to justify dispensing with any consideration of the possible effects of the research on the individuals from whom the information and specimens are obtained” (3). Although Rothstein presents neither evidence nor argument for his sweeping conclusion, presumably it follows from the case of the Havasupai Indian tribe as well as several hypothetical conjectures of how deidentified data might expose subjects’ private information, along with opinion polls that ask whether people would like the opportunity to consent before their medical data or tissue samples are utilized in research. Rothstein maintains that the only gain from current policy is convenience and reduced burden on researchers, which he dismisses as an unacceptable “price to pay for safeguarding the privacy and autonomy of individuals” (3).