Expanding the Concept of Social Value in Health-Related Research

Recent bioethical work has highlighted the ethical importance of ensuring that health-related research has sufficient social value. Health-related research with inadequate social value not only wastes scarce resources, it unjustifiably harms human and animal subjects and threatens public trust in the research enterprise. Yet while bioethicists generally agree that the social value of health-related research consists in the potential for the information generated to promote human health, we argue to the contrary that this health-focused conceptualization of “social value” is overly narrow. First, we review the literature on social value to show that bioethicists adopted the health-focused conceptualization because it helpfully contrasted with older notions of intrinsic scientific value and instrumental value, rather than because of explicit arguments. Second, we identify several alternative community and individual goods that health-related research can promote besides or instead of health, including autonomy, security, and non-health-related well-being. For example, health-related research can promote the autonomy of religious groups by developing interventions that better align with their values, such as bloodless surgery for Jehovah’s Witnesses, and such research is intrinsically valuable apart from its promotion of health. Third, we offer and then critically assess what we take to be the best rationale for adopting an exclusive health focus, namely that doing so is more practically feasible than attempting to assess broader forms of value. We conclude that this is sometimes true, but not always, and hence that concerns of feasibility do not universally preclude consideration of the diverse ways health-related research can promote social value.

Robert Steel, PhD – Faculty, Department of Bioethics, National Institutes of Health Clinical Center