Health Information Equity
This paper posits that the ability to collect and aggregate data about patients — including physical conditions, genetic information, treatments, responses, and outcomes — is changing medical research today. The author states that the collection of such information raises serious ethical concerns because it imposes special burdens on specific patients whose records form the data pool for queries and analyses. This article argues that laws should distribute information burdens across society in a just manner. Part I lays out how new laws and policies are facilitating the disproportionate collection and public use of data. Part II details the kinds of burdens such practices can impose. Part III provides an ethical framework to assess these inequities. Part IV then shows what regulatory and statutory levers can be used to render secondary research more equitable. Finally, the author outlines a framework to reorganize privacy risk in ways that are ethical and just. Where bioethics has sought only to incorporate autonomy concerns in health data collection, this framework provides a guide for moving beyond autonomy to equity concerns.
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 clinical encounters—gives us insight into the broader role that health information plays in forming personhood, citizenship, and community.
"Health Information Equity" by C. Konnoth University of Pennsylvania Law Review