Contested Illnesses Research Group
Brown University , Providence RI
The ethical issues and scientific challenges of “research right-to-know” are gaining currency in the field of environmental health research as new chemical analytical methods detect ever-lower concentrations of an increasing number of poorly understood contaminants. New air and dust sampling in home environments, coupled with biomonitoring of human tissues, generate highly individualized and personal data that can be used for very public purposes. As the policy implications of environmental pollutant sampling and biomonitoring play out in the policy arena, individuals and at-risk communities who participate in sampling protocols are often faced with the daunting task of understanding and interpreting complex data regarding their own pollutant body burdens, without a clear sense of the implications of these results for their health or the health of their offspring. This raises questions about how to engage study participants in developing appropriate protocols for reporting back environmental monitoring and biomonitoring results in ways that adequately address the potentially divergent concerns and ethical issues of individuals and communities.
This project examines values and ethical issues in reporting environmental health study results to individual study participants as well as to whole communities. We compare values and experiences between two communities that differ widely on race and class composition. We are interested in learning how participants in environmental health research, particularly sampling studies, perceive and exercise their right to obtain individual- and community-level study results. This is what we term the “research right to know.” This project examines how communities and individuals view the benefits and risks of learning their own results, particularly when the human health implications of collected data are scientifically uncertain. We will also investigate how community activists view their research right to know, and whether activist values related to reporting conflict with study participants’ views. In addition we will examine how study participant and activist perspectives relate to traditional and emerging ethical standards in science, and how the experience of reporting environmental health study results has implications for shaping future ethical standards and practices involving environmental research.
This project addresses these questions by examining individual and community values and ethical frameworks for reporting of contaminant levels in homes and biological (urine) samples in two communities: Cape Cod, Massachusetts, a predominantly middle class, older, predominantly white population in a region with unexplained excess breast cancer incidence, and Richmond, California, a predominantly working class, African American, and Latino community that has been impacted by pollution from nearby-by oil refineries and other industrial facilities. Study results will be reported to individuals via written letters and fact sheets, with an opportunity for telephone and in-person follow-up. Monitoring results and their interpretation will also be reported to communities through the news media, study web sites, and community outreach meetings.
National Science Foundation