Moving Forward with Reporting Back Individual Environmental Health Research Results
Publication: Environmental Health Perspectives
Volume 131, Issue 12
CID: 125002
Abstract
Background:
The practice of reporting back individual results to participants in environmental health research has evolved significantly over the past 20 years. Research findings support the potential of report-back to enhance the ethics, quality, and impact of environmental health research. Nonetheless, implementation of environmental health report-back practices is not yet routine.
Objectives:
We propose a framework for institutionalizing appropriate report-back to participants of their individual results across the environmental health research enterprise. We provide a brief overview of the rationales for report-back, social science research on report-back experiences over the past two decades, and recent efforts to synthesize guidance in this field. We also describe barriers to be addressed in moving toward widespread implementation of report-back.
Discussion:
Report-back of individual results is increasingly recognized as an ethical responsibility and essential component of impactful environmental health research. Experience shows that when personal results are returned with appropriate contextual information, report-back can increase environmental health literacy, promote individual actions, and enhance engagement in policy change. Therefore, report-back can promote environmental justice and reduce disparities in access to science. Despite this evidence base, report-back is not widely implemented. We recommend the collaborative development of guidelines, training, and resources to build capacity for appropriate report-back to study participants across the environmental health research enterprise, and we identify research priorities to advance the field. Development of tools and shared infrastructure for report-back holds promise for reducing barriers while ensuring high-quality personalized reports. Disseminating successful case studies could also advance excellence. We recommend including diverse scientific disciplines, community partners, representatives of study populations, clinicians, institutional review boards (IRBs), legal experts, public health professionals, and government officials in further developing this critical aspect of environmental health research. https://doi.org/10.1289/EHP12463
Introduction
Community-engaged environmental health research teams have been leaders in communicating individual as well as study-wide results to research participants. Their efforts have aimed to fully engage research participants,1,2 build environmental health literacy,3 and inform individual and collective action.4 They have developed ethical frameworks,5,6 practical approaches,7 and user-friendly tools8,9 for reporting results across a wide domain of environmental health research that involves exposure measurements in biological or environmental samples. The practice of returning individual-level results to research participants, which we refer to here simply as “report-back,” has raised a variety of ethical,5,6,10–12 practical,8,9,11,13,14 and legal15 questions.5,13 To address these questions, research partnerships have engaged in an iterative process of implementing report-back, evaluating processes and outcomes, revising practices, and fielding new research to improve methods and build a generalizable evidence base for report-back methods. These approaches have yielded significant benefits for individuals, communities, and policy solutions.11,16–18 Nonetheless, the practice of report-back has not been fully developed, disseminated, and implemented across the environmental health research enterprise.14 According to Lebow-Skelley et al.,19 “despite the many recommendations to return research results to study participants, there continue to be many barriers to implementing this practice, including financial support, lack of expertise, lack of established approaches, and institutional approvals.” We believe that the growing practice of report-back is particularly timely given the increasing emphasis on community engagement in research; attention to environmental justice, diversity, and inclusion; research on ways to address complex problems like climate change; and efforts to increase environmental health literacy. Many research teams have observed that report-back provides an important opportunity to increase environmental health literacy, understanding of the scientific process, and trust in science.11,20,21 Indeed, report-back has been found to increase participants’ capacity to engage in public policy,2,13,22 which is necessary to address many environmental health problems—from hazardous waste cleanup to toxic substances regulation to climate change.
This commentary provides a brief overview of the multiple rationales for report-back of research results, emphasizing the particular relevance to environmental health research of this growing practice. We propose initial actions to support expansion of report-back of environmental health research results that include developing and disseminating guidelines, training, and resources.
Previous Research and Initiatives
Our recommendations build on the substantial body of research and initiatives on report-back that have accumulated over the past two decades. Previous research has found that nearly all study participants wanted to receive their results and perceived value beyond clinical relevance.11,23,24 Studies consistently have shown that participants learn from their reports. They gained knowledge about exposure sources, readily brainstormed about strategies to reduce exposures, and expressed intentions to change behaviors.17,25 In studies of consumer product chemicals and household contaminants, report-back generated conceptual shifts about the nature of pollution, raising awareness that potentially harmful chemicals enter the body from consumer products and linger in household air and dust.20 In communities with a history of industrial pollution sources, participants integrated information about their personal exposure with larger understandings of the health and economic history of their community.26,27 Seeing their own results motivated participants to change behaviors to reduce exposures, and some individuals became involved with local organizations working on policy solutions.22 In addition, the desire to receive results was identified by participants as a motivator for study recruitment.28
To develop reports that are practical for the research team and meaningful for participants, studies have sought input from community partners and study participants and conducted user-testing for reports.7,29,30 Evaluations of report-back practices have assessed the usefulness of data,31 learning outcomes,3,32 the readability of graphs29 and text,25 and the use of data physicalizations.33 Technical tools have been developed to facilitate report-back. For example, the Silent Spring Institute developed the Digital Exposure Report-Back Interface (DERBI), an online framework to produce personalized reports for computer, smartphone, or print.8 Another effort, Macro for Compilation of Reports (MCR) uses Excel to automate aspects of report preparation.9
While researchers and institutional review boards (IRBs) have often anticipated that participants would be overly concerned by their results,14 studies that thoughtfully returned results and interpretive information reported that participants responded positively and without undue worry.13,34,35 Participants’ increase in concerns have been appropriately associated with results showing the highest exposures in comparison with others.34 In 2018, a consensus report of the National Academies of Sciences Engineering and Medicine (NASEM) concluded that concerns about the risks of communicating results had been overstated and that the benefits to participants and the research enterprise have been underestimated.11 The NASEM report highlighted that participants have perceived benefits from report-back even when the links between exposure and health were poorly understood and remediation strategies were not known. For example, when a 2006 pilot study unexpectedly found higher-than-expected levels of serum perfluorooctanoate (PFOA) in a group of girls in the Growing Up Female Study, parents expressed gratitude for honesty in report-back even though the investigators had not identified the source and could not clarify the health implications.21
As this brief summary shows, there is a robust and growing body of research on and experience with the practice of report-back.36 To make further progress, several recent efforts have sought to identify needs and next steps to advance implementation of appropriate report-back of environmental health research results. These include the 2018 consensus report of NASEM, the 2018 Partnerships in Environmental Public Health annual meeting focused on report-back, and the 2022 Workshop on the Ethical, Legal, and Social Implications of Gene-Environment Interaction Research convened by the National Institute of Environmental Health Sciences (NIEHS) and National Human Genome Research Institute (NHGRI).11,12,18 All of these efforts emphasized the need for institutional system changes to support timely implementation and further development of these practices.
Multiple entities are actively exploring how to promote appropriate report-back. In April 2022, the Department of Health and Human Services released a Request for Information with a specific request for input on a Priority Action to “Report research data to communities using culturally appropriate and accessible methods” (Strategy IV: Research and Data Collection, Analysis, Utilization).37 Additionally, the 2023 National Institutes of Health (NIH) Data Management and Sharing Policy has elevated conversations about report-back in the context of increasing access to individual-level data. In addition to concerns about the effectiveness of de-identification measures, limitations on future use, and communication of sharing in consents for individual data, this policy highlights ethical questions about researchers sharing data that has not been returned individually to study participants.38 Thus, this new policy may accelerate the development of models for community engagement in data sharing. Although, to our knowledge, no NIH grant solicitations have required development of a report-back plan, NIEHS has funded some studies that include report-back, including several studies focused on developing, assessing, and evaluating various aspects of report-back. For example, report-back is included in some cohorts within the Superfund Research Program,39 the Environmental Influences on Child Health Outcomes (ECHO) Program,40 Breast Cancer and the Environmental Research Program (BCERP),41 and the NIEHS intramural Gulf Long-Term Follow-up (GuLF) Study.42 Finally, in the U.S., indigenous communities have been leaders in creating processes and structures for maintaining data sovereignty, control over report-back of data, and community review of environmental health research findings prior to publication.43–46
In addition to drawing on existing research, past experience, synthetic efforts, and policy proposals, this commentary also reflects the authors’ experiences as environmental health researchers and community engagement professionals. This experience includes our roles as former members of the National Advisory Environmental Health Sciences Council, where multiple discussions in Open Session have addressed the challenges, needs, and opportunities for report-back in the context of the NIEHS strategic plan, particularly regarding community engagement, environmental justice, and research translation. A 2022 Environmental Factor “Directors Corner” article set the stage for our reflections on these discussions.47
Taken together, past efforts suggest that report-back is an essential component of environmental health research involving human participants. We propose that the time has come to systematically integrate appropriate report-back into the environmental health research enterprise. Many different perspectives need to be incorporated in this effort, including those of researchers, community members, research funders, public health professionals, environmental agencies, IRBs, legal experts, scientific review professionals, and health care providers. We believe that past research and practice provide compelling rationales and a solid foundation for moving forward; however, we recognize that much work remains to develop guidelines for varied research contexts, training for multiple stakeholders, and resources to support appropriate report-back. This commentary sets forth a framework for a collaborative approach to advancing implementation of report-back of individual environmental health research results.
Characteristics of Environmental Health Research Relevant for Report-Back of Individual Results
Many fields are revisiting practices, guidelines, and ethical standards for report-back of research results. However, several characteristics of environmental health research raise particular ethical, legal, and practical considerations for sharing individual results. While these characteristics are not unique to environmental health, we observe that they have elevated interest in report-back in this field over the past two decades. For example:
1.
Many environmental health findings do not meet traditional health-based criteria for reportability. For example, there may not be a clinical standard for an “unsafe” level of the chemical being studied, and research results may not have been generated by a laboratory certified under the Clinical Laboratory Improvements Amendments (CLIA) that provide quality assurance for diagnostic health assessments.11
2.
3.
Particularly in the US, where the system of regulating chemicals is not precautionary,48,49 emerging research may detect potential health effects from chemicals that are unregulated or at levels below current standards. Withholding these results removes individuals’ ability to make their own decisions about risk based on emerging, yet uncertain information.
4.
Many environmental exposures result from the actions of others, and reduction of such exposures depends on collective action to promote prevention, rather than individual treatments, behaviors, or decisions. Situations in which solutions require systems change (rather than treatment of or action by individual patients) are common in environmental health.1 Building collective understanding among similarly situated participants can support collective action.
5.
Techniques for measuring large numbers of environmental chemicals developed with the expansion of the National Exposure Report and other sampling programs in the early 2000s, and methods continue to expand rapidly, yielding large datasets of novel measurements in the context of exposomics and metabolomics investigations.6
6.
7.
8.
Environmental health research is often conducted at the behest of and in partnership with community groups.7,18,50,51 Community members may facilitate or participate in the research primarily because they want to get information about issues of personal concern. Particularly in such cases, research participants and partners may see themselves as co-owners of data.
Other fields of health research have grappled with report-back challenges similar to those for chemical exposures. For example, some genetic research findings may have implications for family members.6 Much can be learned from these fields’ pioneering efforts. However, environmental health researchers often conduct biomonitoring studies in the context of broader community and policy relevance than genetic research. Thus, while much can be learned from report-back in other fields, environmental health research poses new challenges and complexities that merit special attention.
Breadth of the environmental health research field: implications for report-back.
The field of environmental health research is very broad. Different methodologies, types of data collected, and community context affect considerations for appropriate report-back. For example, environmental health data may include:
•
Personal biomonitoring (e.g., blood, urine, teeth, fingernails)
•
Personal exposure (devices that measure environmental exposures experienced by an individual person, e.g., backpack air monitors, silicon bracelets, radiation monitors)
•
Personal environment (samples from the soil, indoor air, paint, dust, water, consumer products, or other exposure experienced by a particular group of people, e.g., at home, workplace, school)
•
Ambient monitoring (samples of outdoor air, surface water, plants, animals in a defined geographic area)
Depending on the nature of the research, results may be shared with individual participants, study participants as a group, an affected community (for example, those similarly situated on the basis of living near where the study was conducted, holding the same occupation, sharing a historical exposure, having a disease history, etc.), and the general public. We focus here on report-back to individuals. However, the term “report-back” is sometimes used for all of these situations. Individual-level report-back often needs to be coordinated within a multilevel context of carefully sequenced communication. For example, it is widely accepted that individuals should get their own results from the research team before they learn about study-wide results in community meetings or from the news media.52 Community meetings may support individual participants as well as informing broader constituencies. Although we focus here on individual level report-back, it is likely that the guidelines, training, and resources that address individual report-back are also relevant to other report-back scenarios.
Rationale for Report-Back
One of the early motivations for expanding individual report-back to include chemicals with uncertain health effects came from cases in which community members initiated research to address their concerns about environmental exposures and joined studies with an expectation that they would receive their own results.1 As the field has developed, multiple rationales for report-back have been articulated. These arguments may be categorized as follows: ethical appropriateness, enhancing research quality, and advancing translational outcomes.
The ethical basis for report-back derives from the classic principles of autonomy, justice, beneficence, and nonmalfeasance and from additional public health values.11 More recent interpretations of autonomy assert that individuals have a right to decide for themselves whether they want to know what is found from the personal information, biological samples, behavioral data, or environmental monitoring they provide.6,11 Basic ethical principles also guide development of report-back approaches that maximize the benefits of the information to participants and mitigate potential negative effects, for example by providing resources to address concerns and guide constructive responses.5 These recent interpretations represent an evolution from traditional clinical research guidelines, often still applied by IRBs, that do not adequately address technological innovations for monitoring new chemicals at the individual level.5,6 Additionally, due to the interdependence of ecological and social factors that affect environmental exposures, broader public health ethical guidelines with an emphasis on prevention, participation, empowerment, community, equity, and timely solutions should be considered when developing appropriate report-back plans for environmental health research involving individual-level exposure assessments.53–55
While ethical concerns have been primary drivers of these practices, report-back also has been shown to enhance the quality of research in many ways. First, many researchers have documented, both anecdotally and through systematic inquiry, that providing individual research results increases participants’ interest in contributing to research and to subsequent engagement throughout the research process.3,11,27–29,56,57 These observations have clear implications for improving recruitment and retention. Second, in our own research17,58 and in anecdotes reported to us by other researchers in interviews,14 conference presentations, and informal conversations, there are examples in which interacting with individual participants about their study results helps researchers to glean new insights or formulate innovative research questions.
Finally, social science research has begun to explore the impacts of report-back on action. Although the literature is not yet extensive, studies to date have shown that participants who view their individual research results are motivated to change behaviors, such as which personal care products they purchase and their practices related to consuming water and food.4,17,20 Participants were more engaged by individual- than only group-level results.34 Returning research results has contributed to collective action based on common disease status, geographic community, and occupational history.16,27,30 Additionally, researchers have documented participants’ intent to engage in policy action, both individually and through advocacy groups.22,30
The overarching goal of promoting health equity spans all three of these rationales for individual report-back of study results. The ethical mandates for report-back are particularly strong in communities that bear disproportionate environmental burdens. The strong evidence that report-back supports action at the individual, community, or policy-level adds to the urgency of providing resources for participatory processes in environmental justice communities. In addition, the transparency involved in implementing report-back may help to build trust in science in minoritized communities affected by past research abuses and other forms of racism.11 Because of these multiple rationales, appropriate report-back is a foundational principle of community-engaged research, especially in studies involving individual-level data collection in environmental justice communities.2,50,51
These rationales for report-back may interact in complex ways. For example, effective communication of individual results can enhance participants’ environmental health literacy, which may in turn support their engagement in future research and policy change. It is important to bear in mind these multiple goals of report-back. Different justifications for report-back may matter more to some individuals and communities than others. We encourage researchers to make their rationale for and expectations of report-back clear to participants from the outset.
Social science research on report-back has robustly affirmed these multiple benefits.36 Nonetheless, report-back has not been widely integrated into the practice of IRBs, funders, or researchers. At the same time, many questions remain about how to do so appropriately under diverse research and community scenarios. Several key areas for future research are highlighted in the conclusion of this commentary.
Challenges of Report-Back
The multiple rationales for and positive outcomes from report-back beg the question: why is report-back not more widely practiced now? Current challenges facing researchers contemplating individual report-back include the following:
•
Regulatory oversight by IRBs: Some IRBs remain rooted in earlier ethical guidelines that restricted report-back to actionable results (i.e., above clinical health guidelines).59 IRBs also may be unfamiliar with the concepts of co-ownership of data that underlie community engaged research and support right-to-know ethics.59 Thus, some researchers may be blocked (or assume they would be blocked) by their IRB from reporting individual environmental health research results, which may have a chilling effect on expansion of report-back.14,59,60
•
Skills needed: Report-back requires multidisciplinary skills beyond those of many research teams.18 For example, participants in an environmental epidemiological study may want to know where their exposures come from and how to reduce them, requiring input from exposure scientists. When an epidemiological study is investigating a novel hypothesis, communications about health implications must draw on expertise in toxicology and laboratory evidence. In addition, expertise in environmental health literacy is vital to reporting results in ways that appropriately communicate individual results and contextual information. Skills in communications, data visualization, and graphic design may also be needed.
•
Communicating uncertainty: Given the goals of research to address new questions, report-back typically occurs in a context of limited information. Uncertainties may include the sources and routes of exposure, health implications, and effectiveness of exposure reduction strategies, and additional uncertainties may arise from limitations in study design. In some circumstances, researchers working in consultation with participant representatives may conclude that the contextual science about the measurements from new technologies is inadequate to give meaning to results. In general, however, effectively communicating to participants both what is known and what is not known is a core component of report-back.
•
Concerns about harm: Despite the 2018 NASEM consensus study conclusion that report-back has benefits with little downside risk, we have observed that researchers who are not familiar with report-back frequently assume participants will overreact in harmful ways.14 In a study that interviewed researchers who had reported back their results, many researchers said that they anticipated that participants would become overly alarmed, but they did not in fact observe undue concern when they did return results.14 Nonetheless, there may be limited circumstances in which report-back is not beneficial or needs to be handled with added considerations. For example, in certain situations, report-back could contribute to stigma or raise legal obligations that need to be anticipated in informed consent.
•
Financial resources: Report-back requires financial resources that may include staff time, technical support (e.g., graphic design), and communications (e.g., printing, meeting costs, mailing). These costs may be difficult to anticipate fully, for example when unexpected findings suggest follow-up testing, education, or action. Unless researchers budget appropriately for report-back in research proposals, these costs may impede report-back efforts.
•
Timing for returning results: The time required for laboratory analysis and preparing a clean dataset may mean that report-back takes place years after the samples were collected and after the funding period ends. In addition, multiple contacts with participants may be needed over time, for example when additional analysis or review yields new findings. Ideally, the project should sustain capacity to address questions and concerns by participants for a period of time after they receive their results. Thus, financial, technical, and human resources to support report-back may need to extend beyond the time period of the initial grant.
•
Grant review criteria and priorities: Perhaps the most fundamental barrier is that report-back is not required, explicitly considered in reviews, or scored as part of research funding programs. Therefore, researchers who devote budgetary resources to report-back may believe they will be at a disadvantage when their projects are reviewed compared to those who maximize funding for research activities. Researchers who do build report-back into their research plans may face the double jeopardy of having a smaller budget for research and reviewers judging the adequacy of their report-back plans in the absence of clear, established, research-based criteria for doing so. In other words, both researchers and reviewers currently are left to independently envision what is appropriate report-back. This gap creates uncertainty, confusion, and unpredictability and slows implementation of this practice.
Discussion
As NASEM reported in 2018, “… as a matter of reciprocity, respect, transparency, and trust, the return of results should be routinely considered …”11 But, what does this “consideration” entail? Based on our observations of evolving practices, we recommend development of guidelines, training, and resources to support dissemination and implementation of practices. To move forward toward this goal, we propose twelve recommendations for developing these three types of report-back supports (Table 1). We are agnostic on who takes these steps but note that federal funding agencies are in a unique position to coordinate the convening, dissemination, and implementation of these approaches, as they have in other areas of research practice including human subjects’ protection, data management and sharing, and evaluation. Many groups may play a role in developing these supports, and we emphasize that diverse stakeholders in the research process should be engaged throughout.
| Area | Recommendation |
|---|---|
| Guidelines | 1. Set expectations for participant-centric design |
| 2. Specify components of report-back plans | |
| 3. Clarify strategies to appropriately communicate uncertainties | |
| 4. Convene stakeholders to refine guidelines for specific types of research | |
| 5. Include report-back plans in relevant funding opportunities | |
| 6. Disseminate report-back guidelines to affected stakeholders | |
| Training | 7. Train research teams, reviewers, and institutional review boards |
| 8. Train external stakeholders | |
| Resources | 9. Provide appropriate financial resources |
| 10. Create cost-effective tools and shared report-back infrastructure | |
| 11. Develop technical resources to meet environmental health researchers’ needs | |
| 12. Focus on accessibility, equitability, and action |
Guidelines
We believe that an important step toward supporting report-back in a broad range of environmental health research is to develop and clearly communicate guidelines for appropriate report-back of individual results. Several efforts to develop guidelines for appropriate report-back have been undertaken but not completed. The most comprehensive effort to date is the 2018 NASEM consensus report, which recommended that every research proposal involving human biospecimens should have a report-back plan.11 Different kinds of research, community contexts, and participant characteristics require different kinds of report-back. However, common high-level principles could guide development of standards, models, and plans for diverse research scenarios. These six recommendations for report-back guidelines lay out several general principles as well as suggestions for refining them in the context of varied research contexts and iterative learning over time.
1. Set expectations for participant-centric design.
At the highest level, the NASEM report emphasizes a participant-centric approach to decisions about report-back, taking into consideration that participants often see value in their results that is not obvious to the researchers.51 This recommendation embodies the principle that participants, community partners, and other stakeholders should be involved in development of report-back plans. Guidelines should clarify this expectation for the process of development of research plans.
2. Specify components of report-back plans.
At a practical level, guidelines should specify key elements of report-back plans, such as what data will be shared, with whom, when, and how, and what contextual information will be included to help participants interpret their results. Contextual information in reports should routinely include information about the study investigators, funders, and review and advisory processes, including IRB oversight. Regarding “when” report-back occurs, current research practices and laboratory capacity sometimes result in substantial lag time between sample collection and availability of clean datasets ready for report-back. Guidelines should address how to account for both expected and unanticipated delays in availability of results. The relevance and actionability of significantly delayed results may merit particular consideration in report-back plans. For example, researchers may plan to share partial information to facilitate immediate action, rather than waiting for full study results to be available.
Several existing efforts provide a foundation for further development of report-back templates. For example, Silent Spring Institute’s When Pollution is Personal report-back manual includes tips such as giving participants the choice of receiving results or not, getting formative input on report-back plans and materials from community members, using text and graphics appropriate to the audience’s level of environmental health literacy, and including aggregate results to convey important study findings.7 Another overview of report-back written in the context of promoting environmental health literacy provides a set of key questions to guide what should be included in participant reports.1 The DERBI software tool also provides a model for how to communicate study results that addresses considerations including how to highlight important results for an individual, graphic benchmarks for comparison to national data or health guidelines, “details on demand” information about health and exposure reduction, ways of updating findings over time, and participant privacy.8
3. Clarify strategies to appropriately communicate uncertainties.
Appropriate communication about uncertainty will likely require particular attention as these guidelines are developed. Each study team will face decisions about how to develop useful contextual information that clearly states what they believe to be true while acknowledging remaining uncertainties. Researchers may need guidance on how to do so without understating study findings or broader scientific knowledge. Additionally, new empirical investigations can continue to inform effective ways to communicate various forms of uncertainty, elucidate how diverse participants interpret communications about uncertainty, and clarify the values and preferences of participant groups in different settings.
Communicating both what is known and what is not known allows participants to apply their own values and preferences for risk-related choices. One way for researchers to explain uncertain health risks is to share the evidence and questions that motivate their research. While explaining uncertainties, we caution against downplaying that evidence. In our experience, researchers sometimes are inclined to give overly reassuring messages in order to not cause concern. However, doing so deprives participants of the opportunity to make their own decisions about whether or not to seek additional information or take precautionary action, and it can cause confusion later if health risks become clearer. Thus, helping researchers appropriately communicate uncertain information should be a central goal of report-back guidelines.
4. Convene stakeholders to refine guidelines for specific types of research.
Report-back is operationalized differently in varied research contexts. We recommend including stakeholders with diverse experiences and perspectives in refining guidelines for different types of environmental health research. One approach might be to convene a writing workshop of researchers, community partners, IRB representatives, and others to develop consensus guidelines for different fields, disciplines, and types of research. These efforts may result in more detailed rubrics for applying report-back principles in different cases. For example, report-back experts have developed templates for designing reports and a conceptual guide to the types of exposure-reduction actions to include in reports based on the level of knowledge of health effects and the efficacy of exposure reduction methods.1,5 Frameworks like that created by Van Horne et al. for exposure science could be developed for other types of environmental health research.43 These convenings may also identify areas in which additional report-back research is needed. For example, the Environmental Influences on Child Health Outcomes (ECHO) Program has supported grant supplements to develop report-back practices for specific research scenarios, such as biomonitoring of pregnant people.
5. Include report-back plans in relevant funding opportunities.
A powerful tool to advance the practice of report-back would be to state in grant application guidelines that research projects involving human exposure measurements should include a report-back plan.11,18 At the same time, we believe it is important to acknowledge that individual report-back may not be desirable for all such studies. Any report-back plan requirement should provide an opportunity for researchers to explain unique challenges that preclude or limit individual report-back of results in their study. Integrating report-back plan requirements into funding opportunities would help assure that report-back is included in research design, budgets, and human subject protocols from the outset, rather than after the study is already underway.7,18 Providing clear expectations, high-level guidelines for process and content, and evaluation criteria within proposal requests may both help researchers develop successful report-back plans and facilitate reviewers’ evaluation of these plans.
6. Disseminate report-back guidelines to affected stakeholders.
Clarifying, communicating, and disseminating guidelines could promote consistent and appropriate report-back. It is essential to actively disseminate these guidelines to all stakeholders in the environmental health research process, including researchers, community and government partners, and IRBs, in order to build a common understanding of appropriate approaches. The training and resource recommendations listed below suggest additional ways to support dissemination.
Although past work strongly supports the high-level principles and recommendations described above, there is ample opportunity for learning, refining, and adapting these guidelines as experience grows. To facilitate this process, When Pollution is Personal recommends that as report-back practices develop, they should be formally evaluated by documenting the approach, soliciting feedback from participants, and tracking impacts over time.7 Integrating social science research into the implementation of environmental health research report-back would maximize learning, advance the field of report-back scholarship, and speed refinement of guidelines. Thus, while initial guidelines may be high-level, additional specification can be expected as experience grows.
Training
Alongside development of guidelines for report-back, it is important to consider how to comprehensively train the environmental health research community in these practices. This includes building the capacity of both individuals directly involved in designing, reviewing, and conducting research and “external” stakeholders who may interact with the report-back process, including community groups, public health officials, clinicians, and relevant agencies.
7. Train research teams, reviewers, and institutional review boards.
As guidelines are developed, training will be needed to help research teams implement these principles in practice. As noted above, community engaged biomonitoring researchers have developed report-back approaches that can be used as a starting point. Additional resources may be developed for diverse constituencies and research areas. For example, researchers who lack community-engaged experience may need training in how to develop and implement participant-centric report-back plans. Training may also help researchers identify needs for new research team members or partnerships with others who can fill these roles.
Grant proposal reviewers and IRB members also must develop their capacity to support consistent, sustainable, and high-quality application of report-back. These constituencies may need training on how to evaluate report-back plans. In our experience, we have found that different IRBs have different interpretations of how to apply ethical principles for human subject research to report-back of environmental health results,16 and they may be unaware of consensus documents and empirical research particular to this field. Therefore, training IRBs will be crucial for the successful implementation of these plans by different research institutions.
One relevant model for developing the capacity of research teams that engage with diverse communities is the NIEHS’s comprehensive effort to support, inform, and improve evaluation of environmental health partnerships. NIEHS staff collected, analyzed, and synthesized evaluation approaches from a wide range of community partnerships. They summarized the resulting case studies, recommendations, and practical advice into the Partnerships for Environmental Public Health Evaluation Metrics Manual.61,62 These materials were disseminated through webinars, workshops, and conference presentations. Elements of the manual have been integrated into numerous NIEHS Requests For Applications that include community engagement. From our perspective, there is a strong consensus in the Partnerships for Environmental Public Health community of practice that these tools significantly improved evaluation practices. We believe that this has contributed to more rigorous, equitable, and impactful engagement programs across the environmental health enterprise. A similar manual and training campaign on report-back in environmental health research could form the basis for training research teams and guide expansion and excellence in this field.
8. Train external stakeholders.
Because effective environmental report-back often seeks to connect study participants with opportunities to act on their results, it often affects stakeholders outside the study team. Researchers need to learn how to identify, brief, and support such external stakeholders to participate constructively. Importantly, community partners may provide study participants with effective avenues for collective or policy action on their personal results. In addition, developing the capacity of health professionals, local health departments, and relevant community organizations to understand environmental health research results may help these groups support participants after research results are shared. For instance, the experience of per- and polyfluoroalkyl substances (PFAS)-contaminated communities showed the importance of educating clinicians so they can respond appropriately if their patients who participated in a study bring results to them.32,63 Local agency staff and elected officials may also be engaged. For example, water suppliers may need to be alerted and included in report-back plans when personal results reveal public drinking water contamination. Training for community partners may increase their engagement in report-back processes and provide opportunities for two-way learning about ethics, methods, and approaches.
Resources
As discussed above in the section on extant challenges to report-back, resource limitations are commonly cited as a barrier to report-back. Accordingly, it seems likely that providing adequate financial, technical, material, and institutional resources would support wider implementation of the practice. We recommend identifying key resource gaps and developing resources to address them. In particular, we believe it is important to provide new funding mechanisms, create tools and shared infrastructure to facilitate cost-effective report-back, and develop technical resources specifically to support report-back of environmental health research results.
9. Provide appropriate financial resources.
Report-back requires dedicated financial resources. Study-specific funding could be part of the initial research grant or provided as a supplement. Importantly, these resource needs may extend beyond the typical funded grant period because of the timing of receiving, analyzing, and sharing results. Additionally, participants may have new questions and concerns over time. Some report-back efforts may benefit from flexible funding so they can provide follow-up testing after remedial actions are taken by the participant. New funding mechanisms should be considered to meet such unique needs, such as small post-grant awards or research supplements.
10. Create cost-effective tools and shared report-back infrastructure.
Report-back could be promoted through development of tools that offer high quality at low cost to individual research teams. Shared infrastructure can include user-tested text and design, science-based content libraries, and semi-automated ability to personalize results while maintaining the ability to tailor reports to specific community contexts. One example is DERBI, the Digital Exposure Report-Back Interface, developed by one of the authors (J.G.B.) and her team at Silent Spring Institute.8 This tool has been used across a wide range of biomonitoring studies and household exposure studies with diverse populations and in multiple languages.8 Researchers can use DERBI to develop reports that draw on a library of vetted contextual information and images that can be modified by the research team to suit their study, including input from community members or participants.
Continuing to develop tools that facilitate cost-effective report-back in multiple types of research is essential to reduce costs and other barriers for individual researchers, such as access to communications skills, technology to personalize results, and broad scientific context. Report-back infrastructure tools could be built into collaborative platforms for multi-site studies or hosted centrally so as to be available to all researchers, minimizing the costs to individual studies. For example, these frameworks could be available through the data centers for laboratory networks, such as the Human Health Exposure Analysis Resource (HHEAR) program,64 or consortia, such as the Environmental Influences on Child Health Outcomes (ECHO) Program.40
11. Develop technical resources to meet environmental health researchers’ needs.
Several specific technical resource gaps have been identified by environmental health report-back experts. For example, the 2018 NASEM report highlights the need to develop technical resources that provide appropriate standards for non-CLIA labs and report-back of these results.11 In addition, as with genetic testing, legal resources that guide and support protections are needed so that environmental health research results cannot be used against participants, for example, by health insurance companies or employers.10,15 Additional technical resource priorities are likely to surface as report-back expands into new arenas.
12. Focus on accessibility, equitability, and action.
Development of resources to support report-back should align with the goals of supporting environmental health action and reducing health inequities. For example, researchers at a university with environmental health-focused community engagement programs may leverage that experience to support report-back; others may lack such expertise. Therefore, low-cost tools, publicly accessible resources, training, and support for researchers and communities with limited institutional support should be prioritized. This recommendation also highlights the need to emphasize the user-friendliness of data sharing tools and infrastructure. Finally, variations in research participants’ environmental health literacy should be accommodated in the design of resources, programs, and tools to promote report-back.
Recommendations for Moving Forward Together
Report-back of environmental health research results is an important foundation of community engagement in research and public support for science. Environmental health research often informs individual, community, organizational, and policy-level action. In this commentary, we have described some of the past experience and research that has demonstrated the power of report-back of individual results to help translate research into action to improve environmental public health.4,16,17,52,65 Additionally, research and practice have established strong rationales for implementation of report-back. Models of effective implementation have been demonstrated in multiple settings.4,13,17,21,29,31,32,34,52,66 However, there are barriers to expanding this practice, including lack of financial support, demands on researchers’ time, the need for multidisciplinary expertise, uncertainty about communication approaches, and difficulty securing institutional approvals. To address these barriers, we believe that the research community needs guidelines, training, and resources to support appropriate report-back across the environmental health enterprise.
The emerging best practices of report-back are founded on extensive research on ethics, logistics, action impacts, and participant experiences. Nonetheless, additional research is needed to support institutionalizing report-back and continually improving report-back methods. Findings from social science studies on the report-back process can be integrated into guidelines over time in an iterative process. Thus, we recommend considering guidelines for report-back to be an evolving framework informed by evolving research and practice, rather than a static product. Some examples of key areas for future research include:
•
How best to communicate findings, implications, and uncertainties to diverse audiences
•
Appropriate protocols for communicating with participants with high outlier results
•
Ethical and practical considerations for dissemination and implementation of environmental health report-back in clinic-based studies, medical monitoring, and clinical care
•
Report-back issues unique to research on gene-environment interactions
•
Potential approaches for report-back of results from pooled- or long-term cohort studies
•
Identifying resources researchers need in order to apply digital report-back tools
•
How report-back can help communities engage in systems changes that promote health equity
These and other research questions can be pursued iteratively with the development of guidelines, training, and resources to support appropriate report-back.
As discussed throughout this commentary, we believe that the process of advancing appropriate report-back practices must itself be participatory. Diverse perspectives, needs, and skills must be considered in creating guidelines, trainings, and resources to support report-back in environmental health research. Building the capacity of researchers, funders, IRBs, reviewers, and other partners will be essential to support successful implementation of these guidelines. A collaborative process for developing report-back resources will help ensure that the practice of report-back improves environmental public health, reduces health disparities, and translates environmental health research into action.
Acknowledgments
K.S.K. was supported in part by P30 ES 001247 from the National Institute of Environmental Health Sciences. J.G.B. was supported by R21ES032934 and P42ES017198.
Article Notes
Author J.G.B. was involved in/contributed to the NASEM report and DERBI software discussed in the article. The other author has no conflicts to disclose.
References
1.
Brody JG, Brown P, Morello-Frosch RA. 2019. Returning chemical exposure results to individuals and communities. In: Environmental Health Literacy. Finn S, O’Fallon LR, eds. New York, NY: Springer International Publishing, 135–163.
2.
Morello-Frosch R, Brody JG, Brown P, Altman RG, Rudel RA, Pérez C. 2009. Toxic ignorance and right-to-know in biomonitoring results communication: a survey of scientists and study participants. Environ Health 8:6. https://pubmed.ncbi.nlm.nih.gov/19250551/, https://doi.org/10.1186/1476-069X-8-6.
3.
Ramirez-Andreotta MD, Brody JG, Lothrop N, Loh M, Beamer PI, Brown P. 2016. Improving environmental health literacy and justice through environmental exposure results communication. Int J Environ Res Public Health 13(7):690. https://pubmed.ncbi.nlm.nih.gov/27399755/, https://doi.org/10.3390/ijerph13070690.
4.
Ramirez-Andreotta MD, Brody JG, Lothrop N, Loh M, Beamer PI, Brown P. 2016. Reporting back environmental exposure data and free choice learning. Environ Health 15:2. https://pubmed.ncbi.nlm.nih.gov/26748908/, https://doi.org/10.1186/s12940-015-0080-1.
5.
Brody JG, Morello-Frosch R, Brown P, Rudel RA, Altman RG, Frye M, et al. 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. https://pubmed.ncbi.nlm.nih.gov/17666695/, https://doi.org/10.2105/AJPH.2006.094813.
6.
Morello-Frosch R, Varshavsky J, Liboiron M, Brown P, Brody JG. 2015. Communicating results in post-Belmont era biomonitoring studies: lessons from genetics and neuroimaging research. Environ Res 136:363–372. https://pubmed.ncbi.nlm.nih.gov/25460657/, https://doi.org/10.1016/j.envres.2014.10.001.
7.
Dunagan S, Brody J, Morello-Frosch R, Brown P, Goho S, Tovar J, et al. 2013. When Pollution is Personal: Handbook for Reporting Results to Participants in Biomonitoring and Personal Exposure Studies. Newton, MA: Silent Spring Institute.
8.
Boronow KE, Susmann HP, Gajos KZ, Rudel RA, Arnold KC, Brown P, et al. 2017. DERBI: a digital method to help researchers offer “right-to-know” personal exposure results. Environ Health Perspect 125(2):A27–A33. https://pubmed.ncbi.nlm.nih.gov/28145870/, https://doi.org/10.1289/EHP702.
9.
Polka E, Childs E, Friedman A, Tomsho KS, Claus Henn B, Scammell MK, et al. 2021. MCR: open-source software to automate compilation of health study report-back. Int J Environ Res Public Health 18(11):6104. https://pubmed.ncbi.nlm.nih.gov/34198866/, https://doi.org/10.3390/ijerph18116104.
10.
Nelson JW, Scammell MK, Altman RG, Webster TF, Ozonoff DM. 2009. A new spin on research translation: the Boston consensus conference on human biomonitoring. Environ Health Perspect 117(4):495–499. https://pubmed.ncbi.nlm.nih.gov/19440485/, https://doi.org/10.1289/ehp.0800037.
11.
National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Sciences Policy. 2018. Returning Individual Research Results to Participants: Guidance for a New Research Paradigm. Washington DC: National Academies Press.
12.
NIEHS (National Institute of Environmental Health Sciences). 2022. Ethical, Legal, and Social Implications of Gene-Environment Interaction Research, Virtual Workshop. NIEHS. January 2022.
13.
Brody JG, Dunagan SC, Morello-Frosch R, Brown P, Patton S, Rudel RA. 2014. Reporting individual results for biomonitoring and environmental exposures: lessons learned from environmental communication case studies. Environ Health 13:40. https://pubmed.ncbi.nlm.nih.gov/24886515/, https://doi.org/10.1186/1476-069X-13-40.
14.
Ohayon JL, Cousins E, Brown P, Morello-Frosch R, Brody JG. 2017. Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results. Environ Res 153:140–149. https://pubmed.ncbi.nlm.nih.gov/27960129/, https://doi.org/10.1016/j.envres.2016.12.003.
15.
Goho SA. 2016. The legal implications of report back in household exposure studies. Environ Health Perspect 124(11):1662–1670. https://pubmed.ncbi.nlm.nih.gov/27153111/, https://doi.org/10.1289/EHP187.
16.
Brown P, Brody JG, Morello-Frosch R, Tovar J, Zota AR, Rudel RA. 2012. Measuring the success of community science: the Northern California household exposure study. Environ Health Perspect 120(3):326–331. https://pubmed.ncbi.nlm.nih.gov/22147336/, https://doi.org/10.1289/ehp.1103734.
17.
Perovich LJ, Ohayon JL, Cousins EM, Morello-Frosch R, Brown P, Adamkiewicz G, et al. 2018. 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. journal article. Environ Health 17(1):48. https://pubmed.ncbi.nlm.nih.gov/29784007/, https://doi.org/10.1186/s12940-018-0395-9.
18.
NIEHS (National Institute of Environmental Health Sciences). 2018. Partnerships for Environmental Public Health Annual Meeting. NIEHS. December 2018.
19.
Lebow-Skelley E, Yelton S, Janssen B, Erdei E, Pearson MA. 2020. Identifying issues and priorities in reporting back environmental health data. Int J Environ Res Public Health 17(18):6742. https://pubmed.ncbi.nlm.nih.gov/32947900/, https://doi.org/10.3390/ijerph17186742.
20.
Altman RG, Morello-Frosch R, Brody JG, Rudel R, Brown P, Averick M. 2008. Pollution comes home and gets personal: women’s experience of household chemical exposure. J Health Soc Behav 49(4):417–435. https://pubmed.ncbi.nlm.nih.gov/19181047/, https://doi.org/10.1177/002214650804900404.
21.
Hernick AD, Brown MK, Pinney SM, Biro FM, Ball KM, Bornschein RL. 2011. Sharing unexpected biomarker results with study participants. Environ Health Perspect 119(1):1–5. https://pubmed.ncbi.nlm.nih.gov/20876037/, https://doi.org/10.1289/ehp.1001988.
22.
Brody JG, Morello-Frosch R, Zota A, Brown P, Pérez C, Rudel RA. 2009. Linking exposure assessment science with policy objectives for environmental justice and breast cancer advocacy: the Northern California household exposure study. Am J Public Health 99(suppl 3):S600–S609. https://pubmed.ncbi.nlm.nih.gov/19890164/, https://doi.org/10.2105/AJPH.2008.149088.
23.
Emmett EA, Desai C. 2010. Community first communication: reversing information disparities to achieve environmental justice. Environ Justice 3(3):79–84. https://pubmed.ncbi.nlm.nih.gov/21546988/, https://doi.org/10.1089/env.2009.0037.
24.
He X, Karagas MR, Murray C. 2018. Impact of receipt of private well arsenic test results on maternal use of contaminated drinking water in a US population. Sci Total Environ 643:1005–1012. https://pubmed.ncbi.nlm.nih.gov/30189517/, https://doi.org/10.1016/j.scitotenv.2018.06.228.
25.
Tomsho KS, Schollaert C, Aguilar T, Bongiovanni R, Alvarez M, Scammell MK, et al. 2019. A mixed methods evaluation of sharing air pollution results with study participants via report-back communication. Int J Environ Res Public Health 16(21):4183. https://pubmed.ncbi.nlm.nih.gov/31671859/, https://doi.org/10.3390/ijerph16214183.
26.
Judge JM, Brown P, Brody JG, Ryan S. 2016. The exposure experience: Ohio River Valley residents respond to local perfluorooctanoic acid (PFOA) contamination. J Health Soc Behav 57(3):333–350. https://pubmed.ncbi.nlm.nih.gov/27601409/, https://doi.org/10.1177/0022146516661595.
27.
Adams C, Brown P, Morello-Frosch R, Brody JG, Rudel R, Zota A, et al. 2011. Disentangling the exposure experience: the roles of community context and report-back of environmental exposure data. J Health Soc Behav 52(2):180–196. https://pubmed.ncbi.nlm.nih.gov/21673146/, https://doi.org/10.1177/0022146510395593.
28.
Udesky JO, Boronow KE, Brown P, Perovich LJ, Brody JG. 2020. Perceived risks, benefits, and interest in participating in environmental health studies that share personal exposure data: a US survey of prospective participants. J Empir Res Hum Res Ethics 15(5):425–442. https://pubmed.ncbi.nlm.nih.gov/32065041/, https://doi.org/10.1177/1556264620903595.
29.
Haynes EN, Elam S, Burns R, Spencer A, Yancey E, Kuhnell P, et al. 2016. Community engagement and data disclosure in environmental health research. Environ Health Perspect 124(2):A24–A27. https://pubmed.ncbi.nlm.nih.gov/26829152/, https://doi.org/10.1289/ehp.1510411.
30.
Oksas C, Brody JG, Brown P, Boronow KE, DeMicco E, Charlesworth A, et al. 2022. Perspectives of peripartum people on opportunities for personal and collective action to reduce exposure to everyday chemicals: focus groups to inform exposure report-back. Environ Res 212(pt A):113173. https://pubmed.ncbi.nlm.nih.gov/35351450/, https://doi.org/10.1016/j.envres.2022.113173.
31.
Von Behren J, Wong M, Morales D, Reynolds P, English PB, Solomon G. 2022. Returning individual tap water testing results to research study participants after a wildfire disaster. Int J Environ Res Public Health 19(2):907, https://doi.org/10.3390/ijerph19020907.
32.
Giannini CM, Herrick RL, Buckholz JM, Daniels AR, Biro FM, Pinney SM. 2018. Comprehension and perceptions of study participants upon receiving perfluoroalkyl substance exposure biomarker results. Int J Hyg Environ Health 221(7):1040–1046. https://pubmed.ncbi.nlm.nih.gov/30025914/, https://doi.org/10.1016/j.ijheh.2018.07.005.
33.
Perovich LJ, Cai P, Guo A, Zimmerman K, Paseman K, Espinoza Silva D, et al. 2021. Data clothing and BigBarChart: designing physical data reports on indoor pollutants for individuals and communities. IEEE Comput Graph Appl 41(1):87–98. https://pubmed.ncbi.nlm.nih.gov/32956039/, https://doi.org/10.1109/MCG.2020.3025322.
34.
Brody JG, Cirillo PM, Boronow KE, Havas L, Plumb M, Susmann HP, et al. 2021. Outcomes from returning individual versus only study-wide biomonitoring results in an environmental exposure study using the digital exposure report-back interface (DERBI). Environ Health Perspect 129(11):117005. https://pubmed.ncbi.nlm.nih.gov/34766835/, https://doi.org/10.1289/EHP9072.
35.
Wu N, McClean MD, Brown P, Aschengrau A, Webster TF. 2009. Participant experiences in a breastmilk biomonitoring study: a qualitative assessment. Environ Health 8:4. https://pubmed.ncbi.nlm.nih.gov/19226469/, https://doi.org/10.1186/1476-069X-8-4.
36.
Silent Spring Institute. 2023. Report-back of personal environmental exposure: a bibliography. Newton, MA: Silent Spring Institute. https://silentspring.org/sites/default/files/project/2023-03/report-back%20bibliography3.6.2023.pdf [accessed 9 April 2023].
37.
DHHS (Department of Health and Human Services). 2022. Request for information (RFI): 2022 HHS environmental justice strategy and implementation plan draft outline. Washington DC: DHHS.
38.
Boronow KE, Perovich LJ, Sweeney L, Yoo JS, Rudel RA, Brown P, et al. 2020. Privacy risks of sharing data from environmental health studies. Environ Health Perspect 128(1):17008. https://pubmed.ncbi.nlm.nih.gov/31922426/, https://doi.org/10.1289/EHP4817.
39.
NIEHS (National Institute of Environmental Health Sciences). 2023. Superfund research program. Rockville, MD: NIEHS. https://www.niehs.nih.gov/research/supported/centers/srp/index.cfm [accessed 3 September 2023].
40.
NIEHS (National Institute of Environmental Health Sciences). 2023. Environmental influences on child health outcomes (ECHO) program. Rockville, MD: NIEHS. https://www.nih.gov/research-training/environmental-influences-child-health-outcomes-echo-program [accessed 3 September 2023].
41.
NIEHS (National Institute of Environmental Health Sciences). 2023. Breast cancer and the environment research program. Rockville, MD: NIEHS. https://epi.grants.cancer.gov/bcerp/ [accessed 3 September 2023].
42.
NIEHS (National Institute of Environmental Health Sciences). 2023. The Gulf long-term follow-up study (GuLFSTUDY). Rockville, MD: NIEHS. https://www.niehs.nih.gov/research/atniehs/labs/epi/studies/gulfstudy/index.cfm [accessed 3 September 2023].
43.
Van Horne YO, Alcala CS, Peltier RE, Quintana PJE, Seto E, Gonzales M, et al. 2022. An applied environmental justice framework for exposure science. J Expo Sci Environ Epidemiol 33(1):1–11. https://pubmed.ncbi.nlm.nih.gov/35260805/, https://doi.org/10.1038/s41370-022-00422-z.
44.
Rohlman D, Donatuto J, Heidt M, Barton M, Campbell L, Anderson KA, et al. 2019. A case study describing a community-engaged approach for evaluating polycyclic aromatic hydrocarbon exposure in a native American community. Int J Environ Res Public Health 16(3):327. https://pubmed.ncbi.nlm.nih.gov/30682857/, https://doi.org/10.3390/ijerph16030327.
45.
Rohlman D, Frey G, Kile ML, Harper B, Harris S, Motorykin O, et al. 2016. Communicating results of a dietary exposure study following consumption of traditionally smoked salmon. Environ Justice 9(3):85–92, https://doi.org/10.1089/env.2016.0006.
46.
Harding A, Harper B, Stone D, O’Neill C, Berger P, Harris S, et al. 2012. Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues. Environ Health Perspect 120(1):6–10. https://pubmed.ncbi.nlm.nih.gov/21890450/, https://doi.org/10.1289/ehp.1103904.
47.
Woychik R. 2022. From research to action: reporting study findings to participants. Environmental Factor, online edition. July 2022. https://factor.niehs.nih.gov/2022/7/feature/4-feature-report-back-of-research-results [accessed 3 September 2023].
48.
Kriebel D, Tickner J, Epstein P, Lemons J, Levins R, Loechler EL, et al. 2001. The precautionary principle in environmental science. Environ Health Perspect 109(9):871–876. https://pubmed.ncbi.nlm.nih.gov/11673114/, https://doi.org/10.1289/ehp.01109871.
49.
Gross L, Birnbaum LS. 2017. Regulating toxic chemicals for public and environmental health. PLOS Biol 15(12):e2004814. https://pubmed.ncbi.nlm.nih.gov/29252982/, https://doi.org/10.1371/journal.pbio.2004814.
50.
Claudio L, Gilmore J, Roy M, Brenner B. 2018. Communicating environmental exposure results and health information in a community-based participatory research study. BMC Public Health 18(1):784. https://pubmed.ncbi.nlm.nih.gov/29940915/, https://doi.org/10.1186/s12889-018-5721-1.
51.
Israel BA, Parker EA, Rowe Z, Salvatore A, Minkler M, López J, et al. 2005. Community-based participatory research: lessons learned from the centers for children’s environmental health and disease prevention research. Environ Health Perspect 113(10):1463–1471. https://pubmed.ncbi.nlm.nih.gov/16203263/, https://doi.org/10.1289/ehp.7675.
52.
Emmett EA, Zhang H, Shofer FS, Rodway N, Desai C, Freeman D, et al. 2009. Development and successful application of a “community-first” communication model for community-based environmental health research. J Occup Environ Med 51(2):146–156. https://pubmed.ncbi.nlm.nih.gov/19209035/, https://doi.org/10.1097/JOM.0b013e3181965d9b.
53.
Thomas JC, Sage M, Dillenberg J, Guillory VJ. 2002. A code of ethics for public health. Am J Public Health 92(7):1057–1059. https://pubmed.ncbi.nlm.nih.gov/12084677/, https://doi.org/10.2105/ajph.92.7.1057.
54.
Coughlin SS. 2008. How many principles for public health ethics? Open Public Health J 1:8–16. https://pubmed.ncbi.nlm.nih.gov/20072707/, https://doi.org/10.2174/1874944500801010008.
55.
Lee LM. 2017. A bridge back to the future: public health ethics, bioethics, and environmental ethics. Am J Bioeth 17(9):5–12. https://pubmed.ncbi.nlm.nih.gov/28829266/, https://doi.org/10.1080/15265161.2017.1353164.
56.
Madrigal DS, Minkler M, Parra KL, Mundo C, Gonzalez JEC, Jimenez R, et al. 2016. Improving Latino youths’ environmental health literacy and leadership skills through participatory research on chemical exposures in cosmetics: the HERMOSA study. Int Q Community Health Educ 36(4):231–240. https://pubmed.ncbi.nlm.nih.gov/27431602/, https://doi.org/10.1177/0272684X16657734.
57.
Gray KM. 2018. From content knowledge to community change: a review of representations of environmental health literacy. Int J Environ Res Public Health 15(3):466. https://pubmed.ncbi.nlm.nih.gov/29518955/, https://doi.org/10.3390/ijerph15030466.
58.
Rudel RA, Seryak LM, Brody JG. 2008. PCB-containing wood floor finish is a likely source of elevated PCBs in residents’ blood, household air and dust: a case study of exposure. Environ Health 7:2. https://pubmed.ncbi.nlm.nih.gov/18201376/, https://doi.org/10.1186/1476-069X-7-2.
59.
Brown P, Morello-Frosch R, Brody JG, Altman RG, Rudel RA, Senier L, et al. 2010. Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: a case study. Environ Health 9:39. https://pubmed.ncbi.nlm.nih.gov/20637068/, https://doi.org/10.1186/1476-069X-9-39.
60.
Saxton DI, Brown P, Seguinot-Medina S, Eckstein L, Carpenter DO, Miller P, et al. 2015. Environmental health and justice and the right to research: institutional review board denials of community-based chemical biomonitoring of breast milk. Environ Health 14(1):90. https://pubmed.ncbi.nlm.nih.gov/26606980/, https://doi.org/10.1186/s12940-015-0076-x.
61.
NIEHS (National Institute of Environmental Health Sciences). 2013. Evaluation Metrics: Partnerships for Environmental Public Health Manual. Rockville, MD: NIEHS.
62.
Pettibone KG, Parras J, Croisant SP, Drew CH. 2014. Evaluating community and campus environmental public health programs. Prog Community Health Partnersh 8(2):249–257. https://pubmed.ncbi.nlm.nih.gov/25152107/, https://doi.org/10.1353/cpr.2014.0026.
63.
NASEM (National Academies of Sciences, Engineering, and Medicine). 2022. Guidance on PFAS Exposure, Testing, and Clinical Follow-Up. Washington DC: The National Academies Press.
64.
NIEHS (National Institute of Environmental Health Sciences). 2023. Human Health Exposure Analysis Resource. https://hhearprogram.org/ [accessed 3 September 2023].
65.
Boronow K, Cohn B, Havas L, Plumb M, Brody JG. 2023. The effect of individual or study-wide report-back on knowledge, concern, and exposure-reducing behaviors related to endocrine-disrupting chemicals. Environ Health Perspect 131(9):97005. https://pubmed.ncbi.nlm.nih.gov/37682721/, https://doi.org/10.1289/EHP12565.
66.
Ryan PH, Wolfe C, Parsons A, Brokamp C, Turner A, Haynes E. 2023. Participant engagement to develop report-back materials for personal air monitoring. J Clin Transl Sci 7(1):e76. https://pubmed.ncbi.nlm.nih.gov/37008611/, https://doi.org/10.1017/cts.2023.30.
Information & Authors
Information
Published In
License Information
EHP is an open-access journal published with support from the National Institute of Environmental Health Sciences, National Institutes of Health. All content is public domain unless otherwise noted.
History
Received: 17 November 2022
Revision received: 6 September 2023
Accepted: 21 November 2023
Published online: 14 December 2023
Authors
Metrics & Citations
Metrics
Citations
Download citation
If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click DOWNLOAD.
Cited by
- Quinn A, Hengstermann M, Diaz-Artiga A, Pillarisetti A, Clark M, Ruiz-Aguilar L, Ndagijimana F, McCracken J, Rosa G, Checkley W, Peel J, Clasen T, Thompson L, Development of personal air pollution exposure report-back materials to Household Air Pollution Intervention Network (HAPIN) trial participants in Guatemala and Rwanda: a qualitative study, BMJ Global Health, 10.1136/bmjgh-2024-017672, 10, 5, (e017672), (2025).
- Baron S, Cuervo I, Wilets I, Cruz J, Gonzalez A, Flores D, Harari H, A Qualitative Study of the Ethics of Community Scientists’ Role in Environmental Health Research from the Perspective of Community Scientists and Institutional Review Board Staff, Environmental Health Perspectives, 10.1289/EHP15824, 133, 5, (2025).
- Calluori S, Heimke K, Caga‐anan C, Kaufman D, Mechanic L, McAllister K, Ethical, Legal, and Social Implications of Gene‐Environment Interaction Research, Genetic Epidemiology, 10.1002/gepi.22591, 49, 1, (2024).
- Mash C, McAllister K, Wonnum S, Vargas A, Dowling G, Arteaga S, Blaisdell C, Hardy K, Das I, Raju T, Gillman M, Principles and practices of returning individual research results to participants in large studies of pregnancy and childhood, American Journal of Epidemiology, 10.1093/aje/kwae228, 194, 3, (830-836), (2024).