Human genetics, environment, and communities of color: ethical and social implications

A conference titled "Human Genetics, Environment, and Communities of Color: Ethical and Social Implications" and a workshop symposium titled "Human Genetics and Environmental Justice" were held by West Harlem Environmental Action, Inc., with cosponsorship by the National Institute of Environmental Health Sciences (NIEHS), the Community Outreach and Education Program of the NIEHS P30 Center for Environmental Health at the Mailman School of Public Health at Columbia University, New York, and the U.S. Environmental Protection Agency. The conference and symposium took place at Columbia University in New York City on 4-5 February 2002. Expert panels composed of public health practitioners, genetic researchers, ethicists, lawyers, social scientists, and community organizations were assembled to explore how genetic research will affect communities of color, specifically in environmental health research. The goal of the conference was to educate participants on the science and ethics of genetic research and to explore the potential benefits and pitfalls of genetic research vis-à-vis new trends in environmental health research, specifically with reference to communities of color. The goal of the symposium was to discuss the major perceptions and concerns for community-based environmental justice advocates and other communities of color regarding environmental health genetic research. The conference and symposium drew more than 300 participants and articulated important perspectives on the opportunities and challenges for environmental justice advocates and other communities of color posed by rapid advances in environmental health genetic research and toxicogenomics.     

Size characteristics of larger academic human environmental health programs in the United States.

We have performed a benchmark exercise evaluating larger academic programs in human environmental health sciences. These programs are located at schools of public health and at other institutions that have NIEHS Centers of Excellence. The largest programs were those in which there was both an NIEHS center and a public health graduate education program. This suggests that there is synergy between environmental health sciences research and involvement in public and community health.     

Conceptual model of comprehensive research metrics for improved human health and environment

OBJECTIVE: Federal, state, and private research agencies and organizations have faced increasing administrative and public demand for performance measurement. Historically, performance measurement predominantly consisted of near-term outputs measured through bibliometrics. The recent focus is on accountability for investment based on long-term outcomes. Developing measurable outcome-based metrics for research programs has been particularly challenging, because of difficulty linking research results to spatially and temporally distant outcomes. Our objective in this review is to build a logic model and associated metrics through which to measure the contribution of environmental health research programs to improvements in human health, the environment, and the economy. DATA SOURCES: We used expert input and literature research on research impact assessment. DATA EXTRACTION: With these sources, we developed a logic model that defines the components and linkages between extramural environmental health research grant programs and the outputs and outcomes related to health and social welfare, environmental quality and sustainability, economics, and quality of life. DATA SYNTHESIS: The logic model focuses on the environmental health research portfolio of the National Institute of Environmental Health Sciences (NIEHS) Division of Extramural Research and Training. The model delineates pathways for contributions by five types of institutional partners in the research process: NIEHS, other government (federal, state, and local) agencies, grantee institutions, business and industry, and community partners. CONCLUSIONS: The model is being applied to specific NIEHS research applications and the broader research community. We briefly discuss two examples and discuss the strengths and limits of outcome-based evaluation of research programs.     

Optimizing practice through research: a new perspective to solve an old problem

Policy makers, researchers, clinicians, and the public are frustrated that research in the health sciences has not resulted in a greater improvement in patient outcomes. Our experience as clinicians and researchers suggests that this frustration could be reduced if health sciences research were directed by 5 broad principles: (1) the needs of patients and populations determine the research agenda; (2) the research agenda addresses contextual and implementation issues, including the development of delivery and accountability systems; (3) the research agenda determines the research methods rather than methods determines the research agenda; (4) researchers and clinicians collaborate to define the research agenda, allocate resources, and implement findings; and (5) the level of funding for implementation research is commensurate with and proportional to the magnitude of the task. To keep the research agenda focused on the task of improving health and to acknowledge that the effort must be seen as more comprehensive than translating or transferring research into practice (TRIP), we suggest that the task be reframed, using the term optimizing practice through research.     

The NIEHS Environmental Health Sciences Data Resource Portal: placing advanced technologies in service to vulnerable communities

BACKGROUND: Two devastating hurricanes ripped across the Gulf Coast of the United States during 2005. The effects of Hurricane Katrina were especially severe: the human and environmental health impacts on New Orleans, Louisiana, and other Gulf Coast communities will be felt for decades to come. The Federal Emergency Management Agency (FEMA) estimates that Katrina's destruction disrupted the lives of roughly 650,000 Americans. Over 1,300 people died. The projected economic costs for recovery and reconstruction are likely to exceed $125 billion. OBJECTIVES: The NIEHS (National Institute of Environmental Health Sciences) Portal aims to provide decision makers with the data, information, and the tools they need to a) monitor human and environmental health impacts of disasters; b) assess and reduce human exposures to contaminants; and c) develop science-based remediation, rebuilding, and repopulation strategies. METHODS: The NIEHS Portal combines advances in geographic information systems (GIS), data mining/integration, and visualization technologies through new forms of grid-based (distributed, web-accessible) cyberinfrastructure. RESULTS: The scale and complexity of the problems presented by Hurricane Katrina made it evident that no stakeholder alone could tackle them and that there is a need for greater collaboration. The NIEHS Portal provides a collaboration-enabling, information-laden base necessary to respond to environmental health concerns in the Gulf Coast region while advancing integrative multidisciplinary research. CONCLUSIONS: The NIEHS Portal is poised to serve as a national resource to track environmental hazards following natural and man-made disasters, focus medical and environmental response and recovery resources in areas of greatest need, and function as a test bed for technologies that will help advance environmental health sciences research into the modern scientific and computing era.     

Environmental public health research: engaging communities

Environmental public health research is a multi-disciplinary and multi-institutional field of endeavor that is changing. New and innovative approaches are vital to researchers and communities. Partnerships and collaborations also are part of the equation. Thus, engaging communities is a necessary component for successful environmental public health research. The federal government has a fiduciary and a moral responsibility to provide ethical research in communities with the same integrity as required for individuals. There is an inherent distrust by many communities, especially minority communities, in light of past public health research failures. Communities targeted by public health researchers may be aware of the need to improve the community's environmental health and quality of life but are unsure of the methods and benefits. This in turn requires competent and attentive collaborations between the community and the researcher(s). Communities are indeed more astute to their physical surroundings, but may still not understand the nature and intent of the research process. Therefore, the collaboration and partnership should start as early in the design, planning, and execution of the project as possible. Future challenges in genetic screening and research will only increase the need for communities to be engaged in public health research.     

Measuring the success of community science: the northern California Household Exposure Study

Background: Environmental health research involving community participation has increased substantially since the National Institute of Environmental Health Sciences (NIEHS) environmental justice and community-based participatory research (CBPR) partnerships began in the mid-1990s. The goals of these partnerships are to inform and empower better decisions about exposures, foster trust, and generate scientific knowledge to reduce environmental health disparities in low-income, minority communities. Peer-reviewed publication and clinical health outcomes alone are inadequate criteria to judge the success of projects in meeting these goals; therefore, new strategies for evaluating success are needed.Objectives: We reviewed the methods used to evaluate our project, “Linking Breast Cancer Advocacy and Environmental Justice,” to help identify successful CBPR methods and to assist other teams in documenting effectiveness. Although our project precedes the development of the NIEHS Evaluation Metrics Manual, a schema to evaluate the success of projects funded through the Partnerships in Environmental Public Health (PEPH), our work reported here illustrates the record keeping and self-reflection anticipated in NIEHS’s PEPH.Discussion: Evaluation strategies should assess how CBPR partnerships meet the goals of all partners. Our partnership, which included two strong community-based organizations, produced a team that helped all partners gain organizational capacity. Environmental sampling in homes and reporting the results of that effort had community education and constituency-building benefits. Scientific results contributed to a court decision that required cumulative impact assessment for an oil refinery and to new policies for chemicals used in consumer products. All partners leveraged additional funding to extend their work.Conclusions: An appropriate evaluation strategy can demonstrate how CBPR projects can advance science, support community empowerment, increase environmental health literacy, and generate individual and policy action to protect health.     

Community Based Organizations Addressing South Asian American Health

Addressing the health needs of all Americans is central to the public health agenda in the US. Although some progress has been made in documenting health disparities among South Asians living in the US, more attention is needed to fully understand how communities are addressing the health needs of this community. Community Based Organizations (CBOs) play a vital role in strengthening and empowering communities through outreach and health education. Through research conducted via a web survey and key informant interviews, this study provides a context for understanding how CBOs in the US have begun to address the health of South Asian Americans. Additionally, recommendations are identified that may help improve the health outcomes of this population.     

Human rights and political crisis in Brazil: Public health impacts and challenges

In 31 August 2016, Brazilian president Dilma Rousseff was impeached and replaced by her vice president Michel Temer. Herein, we examine how the conservative agenda of Mr Temer and his supporters is influencing key decisions in the human rights and public health arena in Brazil. The government’s austerity agenda includes severe cuts in critical areas such as health, education and science, jeopardising well-known strategies such as the Brazilian Public Health System (SUS) and nationwide cash transfer program, ‘Bolsa Familia’ – both benefited millions and were the largest of their kind in the world. Mr Temer’s decisions show not only severe cuts in critical areas but also a political agenda that clearly demonstrates a broad shift away from the progressivism and social agenda presented and supported by its predecessors. Most vulnerable groups such as the LGBTQ community, women, people who use drugs and disenfranchised communities have been severely affected. Mr Temer’s administration is putting Brazil far from its once nationwide goal to foster free and universal health care access and social equity for all its citizens. The near future for Brazil is unknown, but both national and international communities anticipate severe problems within the national human rights arena, if nothing changes.

Abbreviations: CCT: Conditional Cash Transfer; LGBTQ: Lesbian, Gay, Bisexual, Transgender and Queer (and/or Questioning); SUS: Brazilian Public Health System     

Building community capacity in public health: the role of action-oriented partnerships.

Public health practice increasingly is concerned with the capacity and performance of communities to identify, implement, strengthen, and sustain collective efforts to improve health. The authors developed ways to assist local Turning Point partnerships to improve their community public health system as a secondary outcome of their work on the expressed needs of the community. Using focus groups, meeting minutes, attendance records, and meeting observation, the authors fed information back to the partnerships on systems change. A public health systems improvement plan supportive of local partnerships' work on specific health issues was funded and the collaborative research agenda was further refined.     

Community-based participatory research: policy recommendations for promoting a partnership approach in health research

Community-based participatory research in public health focuses on social, structural, and physical environmental inequities through active involvement of community members, organizational representatives, and researchers in all aspects of the research process. Partners contribute their expertise to enhance understanding of a given phenomenon and integrate the knowledge gained with action to benefit the community involved. This article presents key principles of community-based participatory research (CBPR), discusses the rationale for its use, and provides a number of policy recommendations at the organizational, community and national levels aimed at advancing the application of CBPR. While the issues addressed here draw primarily upon experiences in the United States, the emphasis throughout this article on the establishment of policies to enhance equity that would serve both to increase the engagement of communities as partners in health research, and to reduce health disparities, has relevant applications in a global context.     

Community-based participatory research as a tool to advance environmental health sciences

The past two decades have witnessed a rapid proliferation of community-based participatory research (CBPR) projects. CBPR methodology presents an alternative to traditional population-based biomedical research practices by encouraging active and equal partnerships between community members and academic investigators. The National Institute of Environmental Health Sciences (NIEHS), the premier biomedical research facility for environmental health, is a leader in promoting the use of CBPR in instances where community-university partnerships serve to advance our understanding of environmentally related disease. In this article, the authors highlight six key principles of CBPR and describe how these principles are met within specific NIEHS-supported research investigations. These projects demonstrate that community-based participatory research can be an effective tool to enhance our knowledge of the causes and mechanisms of disorders having an environmental etiology, reduce adverse health outcomes through innovative intervention strategies and policy change, and address the environmental health concerns of community residents.     

Road Trauma — A Rural Public Health Problem

ABSTRACT: In economic terms road trauma is Australia's major public health problem. It discriminates against the young, the elderly and the rural community. In order to be resolved, the issue must be firmly placed on the health care agenda and more research needs to be carried out in relation to rural road trauma. There are many reasons why rural health professionals should be involved with traffic safety. These include the recognition of road trauma as a health care issue in public debate and health professional training and education; emergency trauma management and continuity of care; research, social advocacy and preventive strategies. Networking and inter-professional cooperation are also seen as vital to the promotion of a safer Australia. The issue has environmental implications and is part of the promotion of healthy communities. The understanding of the implementation problems relating to road safety initiatives is the great traffic safety issue of the decade and health care professionals can help to stimulate debate about these matters.     

Consulting about consulting: challenges to effective consulting about public health research

Objective  To understand barriers to obtaining input from consumers in developing public health research.
Methods  Documentation of a failed attempt at consumer consultation supplies information on barriers to effective involvement and conditions that must prevail to improve consultation.
Results  People are keen to be heard in the formulation of health research. However, competing demands and limited resources make it difficult for community groups to allocate scarce resources to consultation. Sometimes research issues may seem 'academic' and thus remote from the urgent priorities of the people with whom researchers wish to consult. Consultation may require more time than researchers on limited budgets can afford.
Conclusions  Despite a general public health commitment to involving consumers in research development, obstacles to consultation make it difficult to incorporate it into the research agenda.
Implications  Researchers and funding bodies will need to allocate resources to consumer consultation if it is to become the rule rather than the exception in public health research.     

Overcoming barriers to effective community-based participatory research in US medical schools

Research to improve the health of communities benefits from the involvement of community members. Accordingly, major federal and foundation funding agencies are soliciting health promotion/disease prevention programme proposals that require active community participation. However, creating such partnerships is difficult. Communities often perceive conventional research as paternalistic, irrelevant to their needs, manipulative, secretive and invasive of privacy. Many institutions and researchers view community knowledge as lacking in value. Community-based participatory research (CBPR) is a collaborative partnership approach to research that equitably involves community members, organizational representatives and researchers in all aspects of the research process. In this article the authors consider the barriers to institutional change and faculty participation in CBPR, and propose some steps for overcoming the barriers and making CBPR an integral part of a medical institution's research agenda. Training and supporting faculty in the philosophy and methods of this approach is the cornerstone of improved community-based research.     

Peer Reviewed: Charting the Future of Community Health Promotion: Recommendations From the National Expert Panel on Community Health Promotion

In the decades since chronic illnesses replaced infectious diseases as the leading causes of death, public health researchers, particularly those in the field of health promotion and chronic disease prevention, have shifted their focus from the individual to the community in recognition that community-level changes will foster and sustain individual behavior change. The former emphasis on individual lifestyle change has been broadened to include social and environmental factors, often without increased resources. To find new ways to support community health promotion at the national level, the National Center for Chronic Disease Prevention and Health Promotion and the Division of Adult and Community Health invited an external panel of experts to participate in the National Expert Panel on Community Health Promotion. This article highlights the process through which the expert panel developed its eight recommendations. The recommendations include issues related to community-based participatory research and surveillance, training and capacity building, new approaches for health and wellness, and changes in federal investments. They illustrate the steps needed to broaden the traditional scope of public health and to advance a new vision for improving community health and wellness.     

Bringing researchers and community developers together to revitalize a public housing project and improve health

Tens of billions of dollars-both public and private-flow to low-income communities each year, mostly for affordable housing. However, it is rare for the health effects of these investments to be assessed. In San Francisco, California, a collaborative effort is under way that aims to fill this research gap while helping residents of Sunnydale, the city's largest public housing project, where poverty, violence, and truancy are entrenched. The collaboration is in its earliest stages-with construction not scheduled to start for at least four years-but some early lessons have emerged. For example, researchers and community developers have found that their data collection needs and timeline expectations often don't match. Nevertheless, the collaborators intend to use the long period before groundbreaking to establish baseline measurements of residents' social and physical well-being, plan initiatives in collaboration with community members and stakeholders, and seek funding for the initiatives and a longitudinal evaluation of the community.     

Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question

Community engagement is an on-going, arduous, and necessary process for developing effective health promotion programs. The challenges are amplified when the particular health issue or research question is not prominent in the consciousness of the targeted community. In this paper, we explore the community-based participatory research (CBPR) model as a means to negotiate a mutual agenda between communities and researchers. The paper is focused on the (perceived) need for cervical cancer screening in an under-resourced community in Cape Town, South Africa. Cervical cancer is a significant health problem in this community and elsewhere in South Africa. Unlike HIV-AIDS, however, many Black South Africans have not been educated about cervical cancer and the importance of obtaining screening. Many may not consider screening a priority in their lives. Our research included extensive consultations and informal interviews with diverse community and regional stakeholders. Following these, we conducted 27 focus groups and 106 demographic surveys with randomly selected youth, parents, local health care personnel, educators and school staff. Focus group data were summarized and analyzed cross-sectionally. Community stakeholders were involved throughout this research. Our consultations, interviews, and focus group data were key in identifying the concerns and priorities of the community. By engaging community stakeholders, we developed a research framework that incorporated the community's concerns and priorities, and stressed the intersecting roles of poverty, violence, and other cultural forces in shaping community members' health and wellbeing. Community members helped to refocus our research from cervical cancer to 'cervical health,' a concept that acknowledged the impact on women's bodies and lives of HIV-AIDS and STDs, sexual violence, poverty, and multiple social problems. We conclude that the research agenda and questions in community-based health research should not be considered immutable. They need to be open to negotiation, creativity, and constant reinvention.     

Community researchers conducting health disparities research: Ethical and other insights from fieldwork journaling

Lay persons who are trained to conduct research in their own communities form an essential part of many research projects. However, the effects of conducting research in their own communities have not been adequately explored. This paper examines the experiences, perceptions, and challenges faced by a group of community researchers during their involvement in a research project that examined if, and how, the relationships between mothers and their adolescent daughters could be harnessed to develop a daughter-initiated cervical cancer intervention. Seven community researchers interviewed 157 mother-daughter pairs in Cape Town, South Africa. We examine the use of journaling as a tool to document the experiences of community researchers, and we consider how journaling may help the community-based researcher grapple with the research process, and, more broadly, what such journal content illustrates with respect to the nature and challenges of community-engaged health research. An analysis of the content of the journals provides a strong indication of how personal and intimate the research process can be for community researchers by virtue of the background that they bring into the process as well as the additional weight of the research process itself. The complexities of navigating dual and somewhat oppositional roles - the role of impartial scientist or researcher and the role of invested community person - has been both underestimated and insufficiently researched.     

Charting the future of community health promotion: recommendations from the National Expert Panel on Community Health Promotion

In the decades since chronic illnesses replaced infectious diseases as the leading causes of death, public health researchers, particularly those in the field of health promotion and chronic disease prevention, have shifted their focus from the individual to the community in recognition that community-level changes will foster and sustain individual behavior change. The former emphasis on individual lifestyle change has been broadened to include social and environmental factors, often without increased resources. To find new ways to support community health promotion at the national level, the National Center for Chronic Disease Prevention and Health Promotion and the Division of Adult and Community Health invited an external panel of experts to participate in the National Expert Panel on Community Health Promotion. This article highlights the process through which the expert panel developed its eight recommendations. The recommendations include issues related to community-based participatory research and surveillance, training and capacity building, new approaches for health and wellness, and changes in federal investments. They illustrate the steps needed to broaden the traditional scope of public health and to advance a new vision for improving community health and wellness.