To find out how chemical contaminants affect health, scientists measure them in people’s blood, urine, breast milk and other tissues, and in household air and dust. With these new technologies, pollution isn’t just from an industrial smoke stack or waste dump any more--it’s personal, especially for the people who volunteer to be tested in environmental exposure studies.
As these techniques for exposure biomonitoring (measurements in body tissues) and for monitoring in environments expanded, they raised new ethical questions. Would study participants want to know their own results for contaminants in their body? Should researchers report back even when they don’t know yet what the health implications might be or how to reduce exposures?
In the past, researchers were reluctant to report back individual chemical exposures, because they speculated that reporting results would cause alarm if the medical implications were unclear. When Silent Spring Institute began our pioneering Household Exposure Study in 1999, though, that old model didn’t fit with our core values of partnership with the communities we study. We began to develop innovative methods to share results with study participants who wanted to receive them. Since then 9 major guidance documents have called for reporting individual results as the ethical norm.
Through interviews with participants in personal exposure studies and with researchers and human research ethics panels, we developed guidance to help researchers implement the new norms. We found that study participants generally do want their results. In studies that report results along with interpretive information about what scientists do (and don’t) know about links to health and strategies to reduce exposure, people are able to understand their results without undue worry. They learned a great deal about environmental health and began to consider what they can do. At the same time, researchers reported strengthened relationships with participants and new opportunities for scientific insight from focusing on individual results.
This work is part of the Personal Exposure Report-back Ethics (PERE) Study supported by the National Institutes of Health.