Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study

<p>Abstract</p> <p>Background</p> <p>We report on the challenges of obtaining Institutional Review Board (IRB) coverage for a community-based participatory research (CBPR) environmental justice project, which involved reporting biomonitoring and household exposure results to participants, and included lay participation in research.</p> <p>Methods</p> <p>We draw on our experiences guiding a multi-partner CBPR project through university and state Institutional Review Board reviews, and other CBPR colleagues' written accounts and conference presentations and discussions. We also interviewed academics involved in CBPR to learn of their challenges with Institutional Review Boards.</p> <p>Results</p> <p>We found that Institutional Review Boards are generally unfamiliar with CBPR, reluctant to oversee community partners, and resistant to ongoing researcher-participant interaction. Institutional Review Boards sometimes unintentionally violate the very principles of beneficence and justice which they are supposed to uphold. For example, some Institutional Review Boards refuse to allow report-back of individual data to participants, which contradicts the CBPR principles that guide a growing number of projects. This causes significant delays and may divert research and dissemination efforts. Our extensive education of our university Institutional Review Board convinced them to provide human subjects protection coverage for two community-based organizations in our partnership.</p> <p>Conclusions</p> <p>IRBs and funders should develop clear, routine review guidelines that respect the unique qualities of CBPR, while researchers and community partners can educate IRB staff and board members about the objectives, ethical frameworks, and research methods of CBPR. These strategies can better protect research participants from the harm of unnecessary delays and exclusion from the research process, while facilitating the ethical communication of study results to participants and communities.</p

Community-Based Family Health History Education: The Role of State Health Agencies in Engaging Medically Underserved Populations in Understanding Genomics and Risk of Chronic Disease

Although family health history (FHH) collection has been recognized as an influential method for assessing a person’s risk of chronic disease, studies have shown that people who are low-income, from racial and ethnic minorities, and poorly educated are less likely to collect their FHH or share it with a medical professional. Programs to raise public awareness about the importance of FHH have conventionally targeted patients in primary care clinics or in the general community, but few efforts have been made to coordinate educational efforts across settings. This paper describes a project by the Connecticut Department of Public Health’s Genomics Office to disseminate training materials about FHH as broadly as possible, by engaging partners in multiple settings: a local health department, a community health center, and two advocacy organizations that serve minority and immigrant populations. We used a mixed methods program evaluation to examine the efficacy of the FHH program and to assess barriers in integrating it into the groups’ regular programming. Our findings highlight how a state health department can promote FHH education among underserved communities

Blending insights from implementation science and the social sciences to mitigate inequities in screening for hereditary cancer syndromes

Genomic screening to identify people at high risk for adult-onset hereditary conditions has potential to improve population health. However, if not equitably accessible, genomics-informed screening programs will exacerbate existing health inequities or give rise to new ones. To realize the disease prevention potential of these screening tools, we need strategies to broaden their reach. We propose a conceptual framework that merges insights from implementation science and sociological research on health inequities. Our framework does three things: first, it broadens the arenas of action beyond those typically addressed in implementation science frameworks; second, it argues for recruiting more diverse partners to share the work of implementation and dissemination; and third, it shows how implementation activities can be coordinated more effectively among those partners. We use screening for hereditary breast and ovarian cancers (HBOC) as a case to illustrate how this enhanced framework could guide implementation science and distribute the benefits of genomic medicine more equitably. Although our example is specific to genomics, this approach is more broadly applicable to the field of implementation science. Coordinated action among multiple stakeholders could translate a host of new technologies from the bench to the trench without creating new inequities or exacerbating existing ones

Community-Based Family Health History Education: The Role of State Health Agencies in Engaging Medically Underserved Populations in Understanding Genomics and Risk of Chronic Disease

Although family health history (FHH) collection has been recognized as an influential method for assessing a person’s risk of chronic disease, studies have shown that people who are low-income, from racial and ethnic minorities, and poorly educated are less likely to collect their FHH or share it with a medical professional. Programs to raise public awareness about the importance of FHH have conventionally targeted patients in primary care clinics or in the general community, but few efforts have been made to coordinate educational efforts across settings. This paper describes a project by the Connecticut Department of Public Health’s Genomics Office to disseminate training materials about FHH as broadly as possible, by engaging partners in multiple settings: a local health department, a community health center, and two advocacy organizations that serve minority and immigrant populations. We used a mixed methods program evaluation to examine the efficacy of the FHH program and to assess barriers in integrating it into the groups’ regular programming. Our findings highlight how a state health department can promote FHH education among underserved communities

Tangible evidence, trust and power: Public perceptions of community environmental health studies

Communities with environmental health concerns in the USA frequently request studies from their local or state departments of public health. This paper presents findings from three focus groups conducted in communities north of Boston that have been the subject of two different environmental health studies. The focus groups were designed to elicit residents' perceptions of environmental health, and of the particular studies conducted in their communities. In all focus groups, participants had difficulty accepting the findings of health studies that contradicted their own experiences of environmental exposures and illness. Our results suggest that lay knowledge, informed in varying degrees by the experience of what we term "tangible evidence," creates a lens through which communities interpret a health study's findings. The differences in reliance on tangible evidence were related to participants' sense of trust in public officials, and the institutions responsible for conducting health studies. Participants from the wealthier, predominantly white communities discussed trust in study design and methodologies used. In contrast, participants from the lower-income, higher-minority communities assessed health studies with reference to their trust (or lack thereof) in study sponsors and public health institutions. Participants' experience of tangible evidence, trust or distrust in health agencies and research institutions, and a sense of relative community power, influence how they assess the findings of environmental health studies and may have implications for pubic health.USA Environmental health Environmental justice Focus groups Lay knowledge Power Trust

Blending Insights from Implementation Science and the Social Sciences to Mitigate Inequities in Screening for Hereditary Cancer Syndromes

Genomic screening to identify people at high risk for adult-onset hereditary conditions has potential to improve population health. However, if not equitably accessible, genomics-informed screening programs will exacerbate existing health inequities or give rise to new ones. To realize the disease prevention potential of these screening tools, we need strategies to broaden their reach. We propose a conceptual framework that merges insights from implementation science and sociological research on health inequities. Our framework does three things: first, it broadens the arenas of action beyond those typically addressed in implementation science frameworks; second, it argues for recruiting more diverse partners to share the work of implementation and dissemination; and third, it shows how implementation activities can be coordinated more effectively among those partners. We use screening for hereditary breast and ovarian cancers (HBOC) as a case to illustrate how this enhanced framework could guide implementation science and distribute the benefits of genomic medicine more equitably. Although our example is specific to genomics, this approach is more broadly applicable to the field of implementation science. Coordinated action among multiple stakeholders could translate a host of new technologies from the bench to the trench without creating new inequities or exacerbating existing ones