Building Community Capacity to Engage in Healthcare Decisions, Research and Policy-Making
Evidence suggests that the most basic challenges of health literacy and cultural dissonance between first and subsequent generations persist for nearly all immigrants and refugees who come to the United States. These challenges broadly impact many health behaviors such as substance use as well as healthcare-related behaviors such as treatment adherence. Further, common experiences such as immigration across what are often viewed as distinct or different ethnic or cultural communities may be important opportunities to improve our systems of care as a whole.
Through research with local racial and ethnic communities in Seattle, bioethics faculty Joon-Ho Yu has learned that these challenges of health literacy and intergenerational communication also impact use of genetic testing and participation in precision medicine research.
This awareness of cultural issues comes at a time of great enthusiasm for using new “big data” technologies in healthcare and research such as whole genome sequencing; health monitoring and data collection using mobile and wearable devices; and artificial intelligence and machine learning to improve disease detection and treatment selection.
Together these technologies hold great promise for advancing healthcare and even public health. Yet they also present challenges to achieving equity in healthcare and health outcomes in diverse racial and ethnic minority populations. A focus on equity requires ensuring access, cultural acceptability, transparency and education to the various communities. These actions will support individuals, families and communities as they decide whether to engage with these technologies.
Yu works with partners in diverse racial and ethnic communities to better understand how these challenges impact community members’ abilities to make use of emerging health-care technologies such as genomic testing and to develop strategies to address these issues. With funding from the National Human Genome Research Institute, he as his research partners are developing and testing a community-based curriculum to improve health literacy and family communication in diverse communities. They are evaluating the curriculum's impact on the ability of patients and families to make decisions about genomic healthcare and participation in precision medicine research.
In addition, Yu is working with federally qualified health centers that serve culturally and economically diverse communities to identify the information, education and resources needed to support the translation of precision medicine.
Over the next few years, Yu and partners plan to conduct research trials to learn if their community-based curriculum enables patients and families to make good decisions, and if so, to develop approaches for diverse community organizations to adapt the curriculum for their own community contexts.
“Like myself, immigrants and refugees will forever come to the United States and face unique diaspora-specific challenges that are at the same time common to our varied experiences of migration. Nowhere is this more keenly felt but in the context of precision medicine. I want to help communities new to the U.S. make decisions about genomic testing, participation in precision medicine research and other emerging health technologies.”
To enable communities and community-based organizations to engage in public discourse and conduct community-based research about emerging health and healthcare technologies and their bioethical dimensions.
- Rana Amini, International Community Health Services
- Elaine Ishihara, Asian Pacific Islander Coalition Advocating Together for Healthy Communities
- Joomi Kim, Korean Community Service Center
- Tammy Nguyen, Vietnamese community advocate
- Rahel Schwartz, Meredith Mathews East Madison YMCA
- Ofa Vea, Tongan community advocate
- National Human Genome Research Institute
- Bowen DJ, Hyams T, Goodman M, West KM, Harris-Wai J, Yu JH. Systematic review of quantitative measures of stakeholder engagement. Clinical and Translational Science. 2017;10(5):314-336.
- Crouch J, Yu JH, Shankar AG, Tabor HK. “We don’t know her history, her background”: adoptive parents’ perspectives on whole genome sequencing studies. Journal of Genetic Counseling. 2015;24(1):67-77.
- Yu JH, Crouch J, Jamal SM, Tabor HK, Bamshad MJ. Attitudes of African Americans toward return of results from exome and whole genome sequencing. American Journal of Medical Genetics Part A. 2013;161A(5):1064-1072.
- Yu JH and Burke W. Toward inclusive genomics. Genewatch. 2012 Jul-Aug;25(4):11-12.
- James RD, Yu JH, Henrickson NB, Bowen DJ, & Fullerton SM, Health Disparities Working Group. Strategies and stakeholders: Minority recruitment in cancer genetics research. Community Genetics, 2008;11: 241-249.
- Yu JH. Genetic testing and profiling. (2009). In C. Trinh-Shevrin, N. Islam, MJ Rey (Eds.), Asian American communities and health: Context, research, policy, and action (pp. 632-638). San Francisco, CA: Jossey-Bass.