For the most part, discussions of the ethical, legal, and social implications (ELSI) of mHealth research have been preoccupied with the welfare and interests of individual participants — i.e., those who carry the devices running the programs that provide their health data to researchers. Since the ultimate benefits of mHealth research are so often framed in terms of “precision” health care capable of “personalizing” health care to individuals, this preoccupation with individual interests is understandable. But other forms of precision medicine research, like population genomic variation studies, have already learned that the individuals donating their data (whether DNA or downloads) are not the only parties whose interests are implicated in the responsible design of data-intensive research. Wherever such research is designed to allow generalizations to be drawn about groups of people beyond the individual data donors, the interests of those groups also become important to consider. In this paper, our thesis is that consideration of potential harms or benefits to groups is just as important in mHealth research as it is in genomics: i.e., that groups do have moral standing in this context, despite the individualistic ethos that flavors this field. To defend this (counter-intuitive) thesis, we first examine the growth of concern for group interests in discussions of biomedical research. Next, we ana-lyze several different accounts of groups’ interests in research that have been proposed in the research ethics literature, to provide a framework for our mHealth research analysis. We then use this framework to demonstrate how mHealth research raises four sets of group-related issues. Finally, we address future directions for empirical research and policy development needed to address group harms, benefits and rights that arise from mHealth research.
Journal of Law, Medicine & Ethics 48 (S1) : 122-128Full article