The growth of the relatively unregulated industries that provide patients with access to their unfiltered medical data is as equally disconcerting as the privacy issues raised in the article. Patients, many of whom may shun arduous physician interactions, may attempt to recklessly wade through their own personal medical data deluge unsupervised. This concern is not simply a paternalistic anxiety; the article itself notes that without technical know-how the data is unintelligible to the untrained. And, even with the data deciphered, without the appropriate medical perspective, patients may ascribe actionable significance where the data has little predictive power, for example: casting off prophylactic precautions in the mistaken belief that they are otherwise healthy, or joining the ranks of the worried well, i.e., mistakenly believing that they are horribly ill. Similarly it is mistakenly axiomatic that we should all have unfettered access to data simply because our bodies generated that data.
Dov Greenbaum and Mark Gerstein
Unpublished letter in response to:
Amy Dockser Marcus and Christopher Weaver, "Heart Gadgets Test Privacy-Law Limits," WSJ, November 29, 2012.