By Celia B. Fisher, Ph.D.
A 20-year, multi-million dollar study of more than 10,000 New Yorkers scheduled to begin next year claims that it will enable the development of theories, therapeutics, and policies to improve the health and quality of human life. Although still in the planning stages, the breadth of the data collection proposed (including health habits, biological data, and geospatial mapping) combined with the lack of detail accompanying such a widespread publicity effort raises questions regarding the extent to which the research risks of such an endeavor have been well thought out.
Along with the contributions that such a large-scale study can make to understanding of the intersecting roles of biological and social factors influencing physical and mental health across the lifespan, comes the potential to widen existing health disparities. The National Institutes of Health’s current emphasis on funding for genetic and neurological factors as major explanatory frameworks runs the risk of reinforcing negative social stereotypes about individual and family characteristics that may inadvertently serve to maintain entrenched health inequities based on class and race/ethnicity long after the study is completed.
To be sure, the economic, racial, cultural, and ethnic diversity of New York City offers an opportunity for health research that can improve health outcomes for all New Yorkers. However, there is growing consensus that broadly worded racial/ethnic classifications to describe research populations, even if based on participant’s self-identifications, is an inaccurate and insufficient measure of genetic variation and an inadequate stand-in for unmeasured social, cultural, and economic contextual factors that play a powerful role in health disparities.
Yet, in the well-publicized description of the Kavli Human Project, aside from a statement that data will be stored in secure areas, little attention has been given to other long-term research risks to those groups who will be affected by future interpretation of study results. Indeed, while the preliminary study design lists a distinguished Privacy and Security Advisory Council at present there appears to be neither a community advisory board nor an research ethics advisory council.
Ensuring the scientific value and validity of research findings aimed at influencing the future health behaviors and medical treatment of racial and ethnic minorities requires this potentially valuable project to provide clear definitions of what class, race and culture mean, taking into account how these definitions are continuously shaped and redefined by social and political forces. It also requires continuous reflection on how throughout medical science history and in contemporary political discourse explanations for racial/ethnic health inequities are influenced by beliefs regarding the inherent superiority of the majority group.
In planning how to report their results, it is hoped that Kavli investigators will also be alert to the public tendency toward racializing professional and societal definitions of normal and abnormal health behaviors. Ethical caution will be particularly critical for dissemination of research that runs the risk of attributing health problems to genetic or cultural dispositions in marginalized groups rather than to policies that sustain systemic political and institutional health inequities.
Celia B. Fisher, Ph.D. is the Fordham University Marie Ward Doty University Chair in Ethics and Director of the Center for Ethics Education and the HIV/Drug Abuse Prevention Research Ethics Institute. Fisher’s Decoding the Ethics Code: A Practical Guide for Psychologist, is now in its fourth edition from Sage Publications.