National Academies calls for greater sharing of results with study participants
Last month, an expert committee of the National Academies of Sciences, Engineering, and Medicine (NASEM) reviewed the pros and cons of sharing individual results with study participants and concluded that the old restrictions don’t make sense anymore. Research has become more collaborative, with study participants treated as partners rather than as “subjects,” and their ability to benefit from their own research results often extends beyond medical care.
Findings from the report validate Silent Spring's methodology of reporting back to study participants--an approach pioneered by Dr. Julia Brody, Silent Spring’s executive director, in 2003. Not only do participants in biomonitoring studies have a right to know their results, returning results "improves science and health literacy, and is an effective tool for translating research into better public health," writes Brody in a recent op-ed published in STAT.
Resources or References
National Academies press release: "Individual Research Results Should Be Shared With Participants More Often, Says New Report; Recommends Framework for Decision-Making" (July 10, 2018)
National Academies of Sciences, Engineering, and Medicine. 2018. Returning Individual Research Results to Participants: Guidance for a New Research Paradigm. Washington, DC: The National Academies Press. https://doi.org/10.17226/25094.