摘要：The recent flood of research concerning pollutants in personal environmental and biological samples—blood, urine, breastmilk, household dust and air, umbilical cord blood, and other media—raises questions about whether and how to report results to individual study participants. Clinical medicine provides an expert-driven framework, whereas community-based participatory research emphasizes participants’ right to know and the potential to inform action even when health effects are uncertain. Activist efforts offer other models. We consider ethical issues involved in the decision to report individual results in exposure studies and what information should be included. Our discussion is informed by our experience with 120 women in a study of 89 pollutants in homes and by interviews with other researchers and institutional review board staff. ON JANUARY 29, 2003, readers opened The New York Times to a full-page advertisement that featured a photograph of Andrea Martin, a 56-year-old mother and the founder of the Breast Cancer Fund, with a headline boxed like a cigarette label across her chest: “Warning: Andrea Martin Contains 59 Cancer-Causing Industrial Chemicals.” 1 The ad reported on a study by Environmental Working Group (EWG) and Mt Sinai Medical School that reported finding an average of 90 pollutants in blood samples from 9 volunteers who were tested for 200 environmental chemicals. Details on the EWG Web site put a human face on “the pollution in people” by revealing each volunteer’s test results. 2 A month later, the US Centers for Disease Control and Prevention (CDC) published its Second National Report on Human Exposure to Environmental Chemicals , an extensive assessment of personal exposure statistics for a representative sample of the US population, that included measurement of 116 pollutants in participants’ blood and urine. 3 These reports marked the beginning of a flood of personal exposure information. Scientific journals, activist Web sites, and the news media were soon reporting on contaminants in personal environmental and biological samples—for example, flame retardants in breastmilk, 4 pesticides in umbilicalcord blood, 5 , 6 endocrine-disrupting compounds in homes, 7 phthalates in cars, 8 and chemicals in a family tested by the Oakland Tribune . 9 The Third National Report on Human Exposure to Environmental Chemicals in 2005 reported on 148 chemicals in more than 5000 people. 10 National screening will expand to 473 chemicals in 2009, and biomonitoring programs are beginning in several states. These efforts rest on new chemical analytic methods that enable the detection of ever-lower concentrations of an increasing number of chemicals for which animal and cell studies show troubling biological effects. However, human exposure concentrations, chemical sources, health effects, and exposure-reduction strategies are not yet understood. The new methods and data advance environmental epidemiology and environmental health policy, and they are powerful communication and mobilization tools. However, the methods and data raise ethical and technical issues about how to interpret and report results to study participants and their communities when the health implications of exposures are uncertain. The National Academy of Sciences’ (NAS’s) report, Human Biomonitoring for Environmental Chemicals , notes that chemical testing technologies have advanced faster than ethical guidelines and methods for interpreting and communicating results, and it recommends sharing information about multiple approaches in order to develop best practices. 11 These issues are of particular importance to our study team because of the household exposure study of endocrine-disrupting compounds we are conducting. As part of the Cape Cod (Massachusetts) Breast Cancer and Environment Study, 12 – 14 we tested for 89 endocrine-disrupting compounds in household air and dust from 120 homes and tested a urine sample from the woman in each home who participated in the breast cancer study. The endocrine-disrupting compounds tested for included phthalates, alkylphenols, parabens, polychlorinated biphenyls (PCBs), polybrominated diphenyl ethers (PBDEs), pesticides, and other phenolic endocrine-disrupting compounds. 7 We are continuing the study in Cape Cod and have expanded the study in Northern California. Our approach in the household exposure study is to draw on a community-based participatory research framework 15 and “right-to-know” ethic; we report aggregated results in scientific journals, at public meetings, and in the news media and offered participants the opportunity to receive their individual results. However, we have found few models for reporting personal exposures to study participants; indeed, some researchers and institutional review boards have argued against reporting individual results when the clinical implications are unclear. Because of the dearth of models and the questions about the ethics of reporting, we examined ethical frameworks and interviewed other researchers, institutional review board members, and our study participants about their perspectives. Here, we examine several ethical perspectives on whether to report individual-level exposure results and then consider how to report these results in a community-based participatory research context. We draw qualitatively on all our interviews with researchers, institutional review board staff, and our study participants to date; we plan to report on participant interviews again when they are complete. Our goal here is to stimulate dialogue about individual report-back issues (reporting an individual’s own results to her or him), which are pressing, given the expansion of individual-level exposure measures of emerging pollutants.
