A social and ethical framework for providing health information obtained from combining genetics and fitness tracking data

Abstract

In this paper we explore a new technological intersection in the “big data revolution”: the integration of two forms of data, genetic data and fitness tracking data. For example, a small number of direct-to-consumer (DTC) genetic testing companies have recently begun offering customers the ability to link their fitness tracking data with their genetic profile to get personalized diet and exercise recommendations. In this paper we put forward four ethical considerations that should inform potential uses of this health information. Those considerations are: the heightened risks to privacy resulting from combining sensitive data sets; the poor quality of health information that is possible at present in the realm of precision DTC genomics; the limited usefulness of the recommendations; and finally, the cultural assumptions about health and personal responsibility that are embedded within fitness genetic testing and fitness tracking. To conclude, we offer some guidance on how the benefits and risks of returning this type of health information can be weighed.