“At first I was thinking, ‘God, I wish I didn’t know all this.’ But the more I think about it, the more I understand it, the more I feel like it helps me to … do whatever I can to mitigate or alleviate the toxins that are in my environment … If you don’t know the information then you have an excuse for not being active. But if you know the information then you can’t not participate in trying to make change.” – Participant in Silent Spring Institute’s Household Exposure Study
A New Field of Study
When we asked the women who had opened their homes to us for the Household Exposure Study (HES) if they wanted to receive the results for their own home, 116 of 120 women said “yes.” Open communication with study participants, while always protecting the privacy of their personal information, is at the heart of our approach as a partnership of scientists, activists, policymakers, physicians, and the people who generously participate in our research.
But what are the implications of learning personal exposure results, and how can we make the report-back process ethical and as meaningful as possible for participants? These questions define a new research agenda in which Silent Spring Institute has emerged as a leader. Through our extensive experience reporting individual participants’ exposure results since 1999 and additional interviews with the women who participated in the HES and other studies, Silent Spring Institute has developed an innovative field of ethical study and practice that takes into account how participants are affected by their involvement in research.
Environmental studies are more precise now than ever, documenting unique personal exposure to toxics in addition to general community results. At the same time, researchers face uncertainty about the individual health impact of contaminants and effective strategies to reduce exposure. How do researchers and participants manage this gap between information and impact? How can reporting individual results support participants’ empowerment rather than provoking unconstructive fear?
Further complicating the issue is the reluctance of many researchers and the institutional review boards that manage research involving human subjects to report personal exposures when the clinical implications are unclear.
Silent Spring Institute disputes this “less is more” attitude toward researcher-participant interaction, instead proposing an ethics of engagement based on the belief that participants have a right to know their personal information, and that even uncertain results may prove useful and empowering.
Drawing on interviews with people who have received personal results in its HES and other studies, Silent Spring Institute’s research offers fresh insights into ethical report-back:
- Reporting individual results begins with understanding what people want and need to know to guide their actions.
- Participants overwhelmingly want their results, including explanations of what is unknown or uncertain.
- The trust, partnership, and open communication at the heart of community-based research methods make it easier for participants to receive their results. In addition, community organizations can aid researchers in translating exposure study results to participants and their communities.
- Participants from all socio-economic backgrounds and levels of education have the capacity to understand and grapple with scientific complexity and the uncertainty of their results.
- “One-size-fits-all” is not an appropriate reporting strategy. Environmental, historical, and social context matters! Participants’ understanding of their results is shaped by what they’ve already learned about their local environment and the public health campaigns to which they’ve previously been exposed.
- The most effective report-back materials combine information-rich graphs, written verbal summaries, and opportunities for discussion.
- Report-back discussion plays an important role in motivating participants to consider personal and collective strategies to reduce toxins in their environment.
- Researchers themselves gain important scientific insights from focusing on individual results in the process of designing personal reports.
Based on these findings, Silent Spring Institute has developed guidelines for reporting individual exposure results to study participants, which can be found in our Handbook for Reporting Results, “When Pollution is Personal.”
Silent Spring Institute remains on the cutting edge of research on ethical reporting of personal exposure results. In partnership with researchers at Northeastern University, the University of California, Berkeley School of Public Health, and Harvard Law School, we are continuing to develop guidelines for ethical reporting practices. With a grant from the National Institutes of Health, our Personal Exposure Report-back Ethics (PERE) Study is interviewing study participants, Institutional Review Board members, and researchers in eight exposure studies nationwide.
In particular, our current studies address the impact of individual report-back and barriers to its implementation, such as cultural differences, variations in language and science literacy levels, the challenges of reporting complex results without overwhelming participants, and the difficulty of carrying out report-back in large studies.
Our latest efforts take us onto the digital frontier, as we develop and field-test a user-centered digital interface for reporting personal exposure results, in collaboration with the Harvard Computer Science Department and the Harvard School of Public Health. This project harnesses groundbreaking digital technology so that researchers may respond with agility to individual and cultural preferences and abilities in the report-back process. These digital tools will also make report-back more feasible in large studies.
Building on our strong foundation of innovative research in service of community and action, we also continue to investigate the relationship between receiving personal exposure results and a participant’s motivation to learn about environmental chemicals, to share information, and to take action individually and collectively to reduce exposure.
“Let me get this straight: You have found something, you do not know the cause or solution? Thank you for doing the right thing morally and ethically for sharing this information with us.” – Participant in the National Institute Environmental Health Sciences and University of Cincinnati Growing Up Female Study