Reporting to parents on children’s exposures to asthma triggers in low-income and public housing, an interview-based case study of ethics, environmental literacy, individual action, and public health benefits

Background Emerging evidence about the effects of endocrine disruptors on asthma symptoms suggests new opportunities to reduce asthma by changing personal environments. Right-to-know ethics supports returning personal results for these chemicals to participants, so they can make decisions to reduce exposures. Yet researchers and institutional review boards have been reluctant to approve results reports in low-income communities, which are disproportionately affected by asthma. Concerns include limited literacy, lack of resources to reduce exposures, co-occurring stressors, and lack of models for effective reporting. To better understand the ethical and public health implications of returning personal results in low-income communities, we investigated parents’ experiences of learning their children’s environmental chemical and biomonitoring results in the Green Housing Study of asthma. Methods The Green Housing Study measured indoor chemical exposures, allergens, and children’s asthma symptoms in “green”-renovated public housing and control sites in metro-Boston and Cincinnati in 2011–2013. We developed reports for parents of children in the study, including results for their child and community. We observed community meetings where results were reported, and metro-Boston residents participated in semi-structured interviews in 2015 about their report-back experience. Interviews were systematically coded and analyzed. Results Report-back was positively received, contributed to greater understanding, built trust between researchers and participants, and facilitated action to improve health. Sampling visits and community meetings also contributed to creating a positive study experience for participants. Participants were able to make changes in their homes, such as altering product use and habits that may reduce asthma symptoms, though some faced roadblocks from family members. Participants also gained access to medical resources, though some felt that clinicians were not responsive. Participants wanted larger scale change from government or industry and wanted researchers to leverage study results to achieve change. Conclusions Report-back on environmental chemical exposures in low-income communities can enhance research benefits by engaging residents with personally relevant information that informs and motivates actions to reduce exposure to asthma triggers. Ethical practices in research should support deliberative report-back in vulnerable communities

New battlegrounds over science, risk, and environmental justice: factors influencing the cleanup of military Superfund sites.

Combining quantitative and qualitative approaches, I examine the implementation of the Superfund Act on former US military bases, which represent the nation’s most hazardous waste sites. First, I used data from 127 military Superfund sites for a quantitative analysis of how technical (e.g., the severity of contamination), political (e.g., budgetary priorities), and socioeconomic (e.g., race and income) factors contribute to how quickly sites are remediated. I found that the most contaminated sites do get tackled first, contrary to criticisms of Superfund as an inefficient and overly bureaucratic program. Although socioeconomic factors such as race and income seemingly have little effect on the pace of military site cleanups, qualitative fieldwork shows that economically and ethnically marginalized communities can be particularly vulnerable to the residual effects of a history of militarism. My qualitative fieldwork in California and Puerto Rico examines how widely adopted federal policies on environmental justice and community participation influence site cleanups and finds that (1) Communities may suffer from disproportionately poor health status, yet it is outside the jurisdiction of Superfund to redress any lingering effects from historical exposures to military activities. (2) Public participation is low in part because there are no formal mechanisms to ensure agencies are responsive to public input. Furthermore, participation programs are similarly restricted in addressing health concerns or any social impacts related to past military activities. (3) A lack of historical data on military activities and small and mobile populations make it difficult to reconstruct past health exposures. Taken together, these issues confound the ability of the military to implement its own adopted environmental justice strategies and diversify public participation, as well as respond to the broader health, ecological, and social concerns of affected communities. I conclude with policy recommendations, including 1) the implementation of peer-reviewed evaluations of citizen advisory boards, 2) an increase in community capacity to participate in and influence cleanup programs, 3) better coordination of Superfund cleanup programs with existing government initiatives to assess and address disproportionate health impacts, and 4) the orientation of public health studies not at proving a causal relationship between poor health status and military toxins but rather at establishing what basic healthcare and health surveillance is needed at present

Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results.

As the number of personal exposure studies expands and trends favor greater openness and transparency in the health sciences, ethical issues arise around reporting back individual results for contaminants without clear health guidelines. Past research demonstrates that research participants want their results even when the health implications are not known. The experiences of researchers and institutional review boards (IRBs) in studies that have reported personal chemical exposures can provide insights about ethical and practical approaches while also revealing areas of continued uncertainty. We conducted semi-structured interviews with 17 researchers and nine IRB members from seven personal exposure studies across the United States to investigate their experiences and attitudes about the report-back process. Researchers reported multiple benefits of report-back, including increasing retention and recruitment, advancing environmental health literacy, empowering study participants to take actions to reduce exposures, encouraging shifts in government and industry practices, and helping researchers discover sources of exposure through participant consultation. Researchers also reported challenges, including maintaining ongoing contact with participants, adopting protocols for notification of high exposures to chemicals without health guidelines, developing meaningful report-back materials, and resource limitations. IRB members reported concern for potential harm to participants, such as anxiety about personal results and counterproductive behavior changes. In contrast, researchers who have conducted personal report-back in their studies said that participants did not appear overly alarmed and noted that worry can be a positive outcome to motivate action to reduce harmful exposures. While key concerns raised during the early days of report-back have been substantially resolved for scientists with report-back experience, areas of uncertainty remain. These include ethical tensions surrounding the responsibility of researchers to leverage study results and resources to assist participants in policy or community-level actions to reduce chemical exposures, and how to navigate report-back to vulnerable populations

Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results.

As the number of personal exposure studies expands and trends favor greater openness and transparency in the health sciences, ethical issues arise around reporting back individual results for contaminants without clear health guidelines. Past research demonstrates that research participants want their results even when the health implications are not known. The experiences of researchers and institutional review boards (IRBs) in studies that have reported personal chemical exposures can provide insights about ethical and practical approaches while also revealing areas of continued uncertainty. We conducted semi-structured interviews with 17 researchers and nine IRB members from seven personal exposure studies across the United States to investigate their experiences and attitudes about the report-back process. Researchers reported multiple benefits of report-back, including increasing retention and recruitment, advancing environmental health literacy, empowering study participants to take actions to reduce exposures, encouraging shifts in government and industry practices, and helping researchers discover sources of exposure through participant consultation. Researchers also reported challenges, including maintaining ongoing contact with participants, adopting protocols for notification of high exposures to chemicals without health guidelines, developing meaningful report-back materials, and resource limitations. IRB members reported concern for potential harm to participants, such as anxiety about personal results and counterproductive behavior changes. In contrast, researchers who have conducted personal report-back in their studies said that participants did not appear overly alarmed and noted that worry can be a positive outcome to motivate action to reduce harmful exposures. While key concerns raised during the early days of report-back have been substantially resolved for scientists with report-back experience, areas of uncertainty remain. These include ethical tensions surrounding the responsibility of researchers to leverage study results and resources to assist participants in policy or community-level actions to reduce chemical exposures, and how to navigate report-back to vulnerable populations

Reporting to parents on children’s exposures to asthma triggers in low-income and public housing, an interview-based case study of ethics, environmental literacy, individual action, and public health benefits

Abstract Background Emerging evidence about the effects of endocrine disruptors on asthma symptoms suggests new opportunities to reduce asthma by changing personal environments. Right-to-know ethics supports returning personal results for these chemicals to participants, so they can make decisions to reduce exposures. Yet researchers and institutional review boards have been reluctant to approve results reports in low-income communities, which are disproportionately affected by asthma. Concerns include limited literacy, lack of resources to reduce exposures, co-occurring stressors, and lack of models for effective reporting. To better understand the ethical and public health implications of returning personal results in low-income communities, we investigated parents’ experiences of learning their children’s environmental chemical and biomonitoring results in the Green Housing Study of asthma. Methods The Green Housing Study measured indoor chemical exposures, allergens, and children’s asthma symptoms in “green”-renovated public housing and control sites in metro-Boston and Cincinnati in 2011–2013. We developed reports for parents of children in the study, including results for their child and community. We observed community meetings where results were reported, and metro-Boston residents participated in semi-structured interviews in 2015 about their report-back experience. Interviews were systematically coded and analyzed. Results Report-back was positively received, contributed to greater understanding, built trust between researchers and participants, and facilitated action to improve health. Sampling visits and community meetings also contributed to creating a positive study experience for participants. Participants were able to make changes in their homes, such as altering product use and habits that may reduce asthma symptoms, though some faced roadblocks from family members. Participants also gained access to medical resources, though some felt that clinicians were not responsive. Participants wanted larger scale change from government or industry and wanted researchers to leverage study results to achieve change. Conclusions Report-back on environmental chemical exposures in low-income communities can enhance research benefits by engaging residents with personally relevant information that informs and motivates actions to reduce exposure to asthma triggers. Ethical practices in research should support deliberative report-back in vulnerable communities

Translating community-based participatory research into broadscale sociopolitical change: insights from a coalition of women firefighters, scientists, and environmental health advocates

BackgroundWe report on community-based participatory research (CBPR) initiated by women firefighters in order to share successful elements that can be instructive for other community-engaged research. This CBPR initiative, known as the Women Worker Biomonitoring Collaborative (WWBC) is the first we are aware of to investigate links between occupational exposures and health outcomes, including breast cancer, for a cohort of exclusively women firefighters.MethodsIn order to be reflective of the experiences and knowledge of those most intimately involved, this article is co-authored by leaders of the research initiative. We collected leaders' input via recorded meeting sessions, emails, and a shared online document. We also conducted interviews (N = 10) with key research participants and community leaders to include additional perspectives.ResultsFactors contributing to the initiative's success in enacting broadscale social change and advancing scientific knowledge include (1) forming a diverse coalition of impacted community leaders, labor unions, scientists, and advocacy organizations, (2) focusing on impacts at multiple scales of action and nurturing different, yet mutually supportive, goals among partners, (3) adopting innovative communication strategies for study participants, research partners, and the broader community, (4) cultivating a prevention-based ethos in the scientific research, including taking early action to reduce community exposures based on existing evidence of harm, and (5) emphasizing co-learning through all the study stages. Furthermore, we discuss external factors that contribute to success, including funding programs that elevate scientist-community-advocacy partnerships and allow flexibility to respond to emerging science-policy opportunities, as well as institutional structures responsive to worker concerns.ConclusionsWhile WWBC shares characteristics with other successful CBPR partnerships, it also advances approaches that increase the ability for CBPR to translate into change at multiple levels. This includes incorporating partners with particular skills and resources beyond the traditional researcher-community partnerships that are the focus of much CBPR practice and scholarly attention, and designing studies so they support community action in the initial stages of research. Moreover, we emphasize external structural factors that can be critical for CBPR success. This demonstrates the importance of critically examining and advocating for institutional factors that better support this research

Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results

As the number of personal exposure studies expands and trends favor greater openness and transparency in the health sciences, ethical issues arise around reporting back individual results for contaminants without clear health guidelines. Past research demonstrates that research participants want their results even when the health implications are not known. The experiences of researchers and institutional review boards (IRBs) in studies that have reported personal chemical exposures can provide insights about ethical and practical approaches while also revealing areas of continued uncertainty. We conducted semi-structured interviews with 17 researchers and nine IRB members from seven personal exposure studies across the United States to investigate their experiences and attitudes about the report-back process. Researchers reported multiple benefits of report-back, including increasing retention and recruitment, advancing environmental health literacy, empowering study participants to take actions to reduce exposures, encouraging shifts in government and industry practices, and helping researchers discover sources of exposure through participant consultation. Researchers also reported challenges, including maintaining ongoing contact with participants, adopting protocols for notification of high exposures to chemicals without health guidelines, developing meaningful report-back materials, and resource limitations. IRB members reported concern for potential harm to participants, such as anxiety about personal results and counterproductive behavior changes. In contrast, researchers who have conducted personal report-back in their studies said that participants did not appear overly alarmed and noted that worry can be a positive outcome to motivate action to reduce harmful exposures. While key concerns raised during the early days of report-back have been substantially resolved for scientists with report-back experience, areas of uncertainty remain. These include ethical tensions surrounding the responsibility of researchers to leverage study results and resources to assist participants in policy or community-level actions to reduce chemical exposures, and how to navigate report-back to vulnerable populations