R01 and R21 grant applications only
NIMHD Interests in Initiative
Minority and health disparities populations are underrepresented in genomic research with fewer than 4% of genetic association studies conducted in people of non-European descent. Within genetic research, health disparities populations have been subject to bias, discrimination and racism and experienced group harms from interpretation of genetic findings. Further, minority and health disparities populations often have differences in preferences, values, norms and goals for research, health care, and health. NIMHD is interested in supporting research that seeks to understand or address cultural preferences, values and norms to ensure equitable and ethical uptake of the output of genomic research and genomic medicine.
NIMHD is also interested in supporting research that seeks to understand or address mechanisms and pathways that contribute to health disparities in genomic medicine. Health disparities arise through an interplay of multiple factors such as genetic, cultural, and structural operating at multiple levels e.g., individual, family/household, community, built environment, and healthcare factors.
The research must focus on one or more U.S. minority or health disparity populations (African Americans/Blacks, Hispanics/Latinos, American Indians/Alaska Natives, Asians, Native Hawaiians and Other Pacific Islanders, socioeconomically disadvantaged populations, underserved rural populations, and sexual and gender minority populations). Research may use available secondary data, health system data and/or collection of primary data.
Advance understanding of self-identified race and ethnicity (SIRE) and ancestry informative markers (AIMs) in genomics and biomedical research to enhance ability to describe research participants' diverse backgrounds and experiences in scientifically and socially meaningful ways.
Genomic Health Care
- Advance creation of linguistic guidelines for discussing social categories and reporting on population variability and health disparities.
- Advance understanding on how to avoid or mitigate against stigmatization, group harms, and unintended social implications of research for populations.
- Ethical analysis and/or ways to address cultural and structural barriers and facilitators to enable research participation for racial and ethnic minorities and health disparities populations, including but not limited to, assessing the social value and relevance of research, inaccessibility to research, culturally incongruent research design and/or conduct of research, population mistrust, inadequate health insurance coverage, and legal status in United States.
- Means within the informed consent process that allows for participants with diverse preferences and cultural norms to take part without compromising study integrity.
Broader Legal, Policy and Societal Issues
- Research addressing the relationship between race and ethnicity and health outcomes, particularly with outreach into communities that do not traditionally participate in genomics or biomedical research.
- Communication of the relationship between ancestral biomarkers and self-identified race and ethnicity to individuals and families receiving genomically-based clinical test results.
- Application of genomic medicine with health disparities populations addressing challenges, barriers and patient and provider knowledge, attitudes and beliefs.
- Ways to implement genomic medicine uptake such that equity is achieved, and health disparity populations can participate aligned with their norms and values.
- Understanding the contribution of genomic, psychosocial, and cultural factors that may have a role in health disparities.
- Developing a health equity and social justice lens for the development of diagnostic tools, screening criteria, and treatment plans that take into account genetic diversity and environmental and social factors.
Broader Legal, Policy and Societal Issues
- Implications of genomic variation research and genetic ancestry testing for understanding identity, race and ethnicity, and relationships within and among human populations.
- Develop tools to address differences in patient and provider knowledge, attitudes, and beliefs around core concepts such as privacy, return of results, ensuring trust in genomic medicine.
- Implications of policies for health disparities populations within genetic research and genomic health care.
Nancy L. Jones
National Institute on Minority Health and Health Disparities (NIMHD)