Community Voices on Health Disparities and Translational Genomics Research Challenge Area and Specific Challenge Topic: The Challenge Area this research addresses is 02: Bioethics and the Specific Challenge Topic is 02- OD9OSP-102* Ethical Issues in Health Disparities and Access to Participation in Research. Summary and Specific Aims The relevance of genomics research for addressing health disparities between population groups is currently being debated. As a practical matter, if genomics hopes to have any role in reducing health disparities, its assumptions and goals will have to make sense to the communities involved. We know very little about what underserved and minority communities that are experiencing health inequities know and think about genomic research and health disparities, and how they might inform research plans if they were invited to discuss it. This project seeks to fill that gap. We are at a critical juncture in developing translational genomic research that results in clinical and public health applications and simultaneously addresses the urgent need to reduce health disparities. Our challenge is to understand the views and concerns of underserved and minority communities in order to both identify potential barriers to translational genomics research for health disparities and develop meaningful approaches for overcoming them. The goals of this study are to examine beliefs and experiences that influence understanding of genomic research and its application to health disparities among underserved and minority populations in Cleveland, Ohio, to identify barriers to genomics research relevant to health disparities, and to develop innovative approaches for addressing these barriers through collaborative community-based partnerships. All of these goals will be accomplished by utilizing existing local, regional, and national collaborative partnerships. People's beliefs about themselves, their families, their community, and ethnic identity shape and reinforce opinions about translational genomic research and lay the foundation for any research risks or possible health benefits that might emerge for underserved and minority groups. The proposed research will help fill important gaps in our understanding of this evolving landscape, enabling us consider the diversity that exists in the meanings people give to genetic variation and genomic research, and the implications of both for reducing health disparities. This project achieves the goals of the NIH Challenge Grants by: 1) Responding to the critical need for empirical research on knowledge, beliefs, and experiences related to translational genomics research and health disparities in underserved and minority communities;2) Collaborating with local, regional, and national partners in study design and implementation, developing innovative methods for disseminating study results, and identifying approaches that diminish barriers to genomic research and health disparities;3) Building capacity in local communities through education and training on research methods and community-based studies;4) Stimulating economic development in local communities;approximately 65% of the budget for this study will be used for job creation, participant incentives, and benefits for community partners.
The Specific Aims of this project are listed below:
Specific Aim 1 : To assess knowledge, beliefs, and experiences related to genetic research and health disparities among underserved and ethnic minorities representing African-American, Hispanic, and White communities in Cleveland, Ohio. Twelve focus groups and 120 interviews will be implemented to address: a) the role of genetics in health outcomes for diverse population groups;b) benefits and harms of genomics research for individuals, families, and communities;c) targeting medical interventions to specific racial or ethnic groups;d) the potential for translational genomic research to reduce health disparities.
Specific Aim 2 : To engage community organizations in discussing study results, identifying and addressing challenges to the implementation of genomics research for health disparities, and preparing policy recommendation to better address the research concerns of underserved and minority populations. To achieve this aim, we will develop community-based activities with local, state, and national community partners, including: the Cleveland NAACP, the Cleveland Office of Minority Health, the Cleveland Center for Families and Children, Kirwan Institute for the Study of Race and Ethnicity at Ohio State University, the national Genetics Equity Network, and the Case Center for Reducing Health Disparities. The goals of this study are to examine beliefs and experiences that influence understanding of genomic research and its application to health disparities among underserved and minority populations in Cleveland, Ohio. We also hope to identify barriers to such research and to develop innovative approaches to address them through collaborative community-based partnerships. People's beliefs about themselves, their families, their community, and ethnic identity shape and reinforce opinions about genomic research. The proposed project will help fill important gaps in our understanding of these beliefs and their implications for reducing health disparities.

Public Health Relevance

The goals of this study are to examine beliefs and experiences that influence understanding of genomic research and its application to health disparities among underserved and minority populations in Cleveland, Ohio. We also hope to identify barriers to such research and to develop innovative approaches to address them through collaborative community-based partnerships. People's beliefs about themselves, their families, their community, and ethnic identity shape and reinforce opinions about genomic research. The proposed project will help fill important gaps in our understanding of these beliefs and their implications for reducing health disparities.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
NIH Challenge Grants and Partnerships Program (RC1)
Project #
5RC1HG005789-02
Application #
7937843
Study Section
Special Emphasis Panel (ZRG1-HDM-A (58))
Program Officer
Mcewen, Jean
Project Start
2009-09-25
Project End
2012-08-31
Budget Start
2010-09-01
Budget End
2012-08-31
Support Year
2
Fiscal Year
2010
Total Cost
$491,829
Indirect Cost
Name
Case Western Reserve University
Department
Public Health & Prev Medicine
Type
Schools of Medicine
DUNS #
077758407
City
Cleveland
State
OH
Country
United States
Zip Code
44106
Morello, Laura; Marshall, Patricia A; Hartmann, Christopher D et al. (2017) Photo-documentation in the community: reflections on genetics, health and health disparities. Int J Epidemiol 46:385-389
Hartmann, Christopher D; Marshall, Patricia A; Goldenberg, Aaron J (2015) Is there a space for place in family history assessment? Underserved community views on the impact of neighborhood factors on health and prevention. J Prim Prev 36:119-30
Goldenberg, Aaron J; Hartmann, Christopher D; Morello, Laura et al. (2013) Gene-environment interactions and health inequalities: views of underserved communities. J Community Genet 4:425-34