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Grantee Explores Right-to-Know in Community-Based Participatory Research

By Negin Martin
January 2010

Julia Brody, Ph.D.
Brody presented a spirited talk about the advantages and difficulties of sharing research findings with volunteer subjects. She also praised NIEHS for its support of community-based participatory research. (Photo courtesy of Steve McCaw)

shown left to right, David Balshaw, Ph.D., and Dan Shaughnessy, Ph.D.
Program Administrators David Balshaw, Ph.D., and Dan Shaughnessy, Ph.D., were among the DERT staff at the lecture. (Photo courtesy of Steve McCaw)

Jane Hoppin, Ph.D.
The topic held interest for epidemiologists in the NIEHS Division of Intramural Research, such as Jane Hoppin, Ph.D., who face dilemmas similar to those described by Brody in her work. (Photo courtesy of Steve McCaw)

Deputy Associate Director for Management Chris Long
The talk also drew employees from research support areas of NIEHS, including Deputy Associate Director for Management Chris Long. (Photo courtesy of Steve McCaw)

On Dec. 1, NIEHS welcomed grantee Julia Brody, Ph.D. as the latest speaker in the Keystone Science Lecture Series sponsored by the NIEHS Division of Extramural Research and Training (DERT). Brody discussed the policy and ethical considerations involved in deciding how and when to report test results to individuals and communities participating in personal exposure assessment studies and what information should be included.

According to Brody( Exit NIEHS, sharing results with communities can help people learn about sources of exposure, so they can take action — both in their own lives and through the democratic process. Positive outcomes of informing participants about exposure data include raising environmental literacy, expanding subjects' right-to-know, and building trust.

At the same time, researchers must consider the possibility that data could lead to emotional stress, unnecessary or counterproductive interventions, and stigma.

Providing participants' results builds awareness, trust, and pride

"In traditional clinical ethics, experts decide what to report to study participants, often limiting information to findings that are medically relevant to the individual," Brody said. "In our studies of emerging contaminants, we don't know yet what the health implications will be, but we respect our participants' right to learn their results, consistent with the human research ethics criteria of autonomy, beneficence, and justice."

As Brody explored this ethical dilemma, she reviewed the approach and findings her team of investigators published in an American Journal of Public Health study( Exit NIEHS in 2007, a Journal of Health and Social Behavior study( Exit NIEHS in 2008, and a review( Exit NIEHS in Environmental Health earlier this year. She proposed strategies for reporting exposure results to maximize benefit and minimize negative outcomes for participants.

Presentation of the report also plays an important role in establishing trust and improving environmental knowledge in a community, Brody explained. Researchers should present their results clearly, take the time to describe what is known, and clearly outline the limitations of the study.

Brody shared her own experiences reporting exposure data to individuals as part of her NIEHS-funded research. In her studies, she found that people wanted to know about their individual results. Volunteers expressed pride in participating in a study that helped their communities, and they were generally surprised by the findings, which showed that indoor pollution builds up from everyday consumer products.

Research advances outpace ethical guidelines

Brody explained that recent studies have discovered increasing levels of potentially harmful pollutants in people and raised public awareness of related health risks. Referring to several examples of the "flood of personal exposure information," Brody noted that the ability to detect chemicals in tissue samples and the environment has advanced faster than the development of ethical guidelines and methods for interpreting and communicating results.

Brody is the executive director of the Silent Spring Institute( Exit NIEHS. Established in 1994, Silent Spring is a collaborative effort between scientists and activists to identify environmental factors that influence women's health and contribute to breast cancer.

Citation: Brody JG, Morello-Frosch R, Brown P, Rudel RA, Altman RG, Frye M, Osimo CA, Pérez C, Seryak LM( Exit NIEHS. 2007. Improving disclosure and consent: "Is it safe?": New ethics for reporting personal exposures to environmental chemicals. Am J Public Health 97(9):1547-1554. Epub before print.

Altman RG, Morello-Frosch R, Brody JG, Rudel R, Brown P, Averick M( Exit NIEHS. 2008. Pollution comes home and gets personal: Women's experience of household chemical exposure. J Health Soc Behav 49(4):417-435.

Morello-Frosch R., Brody JG, Brown P, Altman RG, Rudel R, Pérez C( Exit NIEHS. 2009. Toxic ignorance and right-to-know in biomonitoring results communication: A survey of scientists and study participants. Environ Health 8(6). doi:10.1186/1476-069X-8-6

(Negin Martin, Ph.D., is a biologist in the NIEHS Laboratory of Neurobiology Viral Vector Core Facility and a 2009 Science Communication Fellow with Environmental Health Sciences. She recently completed a postdoctoral fellowship with the NIEHS Membrane Signaling Group.)

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