Summarize this content to 1000 words In environmental health, “report back” refers to the process of reporting research findings back to the individuals and communities involved in a study. This practice is crucial for fostering transparency, building trust, and promoting actionable change. However, debate around how to ethically report back continues to evolve as the research community shifts to engage study participants as full and equal partners.On July 26, NIEHS, in partnership with the National Institutes of Health (NIH) Office of Science Policy and the National Human Genome Research Institute (NHGRI), hosted a kickoff meeting for recipients of NIH grants focused on charting a responsible path forward for report back. Researchers from across the country presented eight different awarded projects aimed at informing and developing guidelines, educational resources, and community engagement approaches for effective communication of research results.“Report back is complicated, and there are lots of different variables that have to be considered in our studies,” said NIEHS Director Rick Woychik, Ph.D. “I’m encouraged that we have a diversified portfolio of research strategies to address these complexities so that we can move forward to get the job done.”
Project leaders of eight recently funded grants gathered July 25 to share plans for improving how the results of environmental health studies are communicated to individuals and communities. (Image courtesy of NIEHS)
Right to knowRecent research indicates that study participants want to receive their environmental research results, even if the implications for disease risk or health implications are still uncertain. A 2018 report by the National Academies of Sciences, Engineering, and Medicine (NASEM) considered the various issues surrounding report back and provided some early guidance for researchers.“This report stated in no uncertain terms that report back should be the norm when possible going forward,” said NIEHS Health Scientist Administrator Kimberly McAllister, Ph.D.In other words, people have the “right to know” the information generated by their research participation. The new grant opportunity, which is a partnership between NIEHS, the NIH Office of Science Policy, the All of Us Research Program, and NHGRI, aims to develop tools and approaches for report back and guidance for addressing the ethical, legal, and social challenges that are part of the process.“There’s a lot of concerns about stigma, discrimination, and privacy risks associated with report back, and this is especially of concern for communities that may be carrying the heaviest burden of chemical exposures,” said McAllister.Right to design
Ramírez-Andreotta, associate professor, leads the Integrated Environmental Science and Health Risk Laboratory at the University of Arizona. (Photo courtesy of Mónica Ramírez-Andreotta)
One project funded by the new grant opportunity is exploring how to report back results on both social determinants of health and environmental exposures — such as arsenic, lead, and cadmium levels in soil and dust — in rural and urban communities that are disproportionately affected by pollution.“One of the key bioethical questions guiding this work is how do we address technical elitism,” asked Mónica Ramírez-Andreotta, Ph.D., who leads the project from the University of Arizona.Ramírez-Andreotta has been using an equity-centered community design approach to identify the factors that influence preferred report back strategies.“The rationale behind this is extending the ‘right to know’ to the ‘right to design’ and introducing democracy-based values into the report back process,” she said.Right to understand
Brody is a senior scientist and executive director of the Silent Spring Institute. (Image courtesy of Julia Brody)
Experience shows that participants can benefit from report back and concerns about harm have been overstated, according to the 2018 NASEM report. However, researchers still expressed the desire to carefully navigate specific situations to make sure that report back does not cause harm, citing unintended consequences such as declining property values.Some also voiced the need for trained environmental counselors, analogous to genetic counselors, who can help participants make sense of their research results. Others shared efforts to forge bidirectional communication between researchers and participants, to move the field from the “right to know” to the “right to understand.”“These studies create opportunities to expand environmental health literacy about the multifactorial causes of disease in a way that empowers communities and individuals to take action,” said Julia Brody, Ph.D., from the Silent Spring Institute.Reporting backLiam O’Fallon, who directs the NIEHS Partnerships for Environmental Public Health, said that plans are underway to convene the group again within the next six months to identify the logical next steps for advancing the specific aims of each of the projects as well as the broader objectives of the overall program.“Today, I’ve seen many connections forming in various areas, whether it’s environmental health literacy scales and measures, hubs and portals for sharing our lessons learned, or the products, knowledge, and frameworks we need to report back effectively,” he said. “With all of us coming together, I think we are going be able to do something pretty spectacular.”
Citation:
Creative Reaction Lab [Internet]. 2018. Equity Centered Community Design Field Guide. Available from: https://crxlab.org/our-approach.
(Marla Broadfoot, Ph.D., is a contract writer for the NIEHS Office of Communications and Public Liaison.)
