Governing Health Information

In the last few years, numerous Americans’ health information has been collected and used for follow-on, secondary research. This research studies correlations between medical conditions, genetic or behavioral profiles, and treatments, to customize medical care to specific individuals. Recent federal legislation and regulations make it easier to collect and use the data of the low-income, unwell, and elderly for this purpose. This would impose disproportionate security and autonomy burdens on these individuals. Those who are well-off and pay out of pocket could effectively exempt their data from the publicly available information pot. This presents a problem which modern research ethics is not well equipped to address. Where it considers equity at all, it emphasizes underinclusion and the disproportionate distribution of research benefits, rather than overinclusion and disproportionate distribution of burdens. I rely on basic intuitions of reciprocity and fair play as well as broader accounts of social and political equity to show that equity in burden distribution is a key aspect of the ethics of secondary research. To satisfy its demands, we can use three sets of regulatory and policy levers. First, information collection for public research should expand beyond groups having the lowest welfare. Next, data analyses and queries should draw on data pools more equitably. Finally, we must create an entity to coordinate these solutions using existing statutory authority if possible. Considering health information collection at a systematic level—rather than that of individual