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Summary of project
Amanda M. Gutierrez, MPH received a National Cancer Institute diversity supplement as part of the Sulston Project to conduct a two-year-long qualitative case study that explores the experiences of Hispanic/Latino communities with genetic testing for hereditary cancer risk.
For this case study, we are conducting over 60 in-depth interviews with multiple stakeholder groups (genetics experts, patient advocates, and patients/community members) to identify challenges and potential policy options related to improving access to genetic testing among Hispanic/Latino groups, with special attention to the heterogeneity of the US Hispanic/Latino population. The study includes a focus on policy translation, where we will communicate our empirical findings and policy implications to stakeholders, policymakers, and the scientific community.
This case study will address an important gap in the Sulston Project by describing genetic testing access in the US Hispanic/Latino population and proposing policy options for more effective inclusion of underserved groups in cancer genomic variant commons. We hope this work will help improve genetic risk assessment for hereditary cancers in underserved Hispanic/Latino groups and positively impact their access to genomic medicine and, ultimately, health outcomes.
Professional networking resource for those working with Hispanic/Latino communities around genetic testing for hereditary cancer risk
Separate from the research portion of the project, we are developing a multidisciplinary networking resource to connect professionals working with Hispanic/Latino communities around genetic testing for hereditary cancer risk. The intended audience for this living document includes but is not limited to: scholars/researchers, policymakers, scientists, clinicians, patient advocates, community health workers, patient navigators, patients, and other members of the community.
The resource will be made publicly available in print and online (including on this website), and will be shared across individuals, institutions/organizations, and industries to inform anyone interested about professionals working in this area along with information about their specific studies, programs, and efforts. We hope such a resource will promote sustainability of the work done in this study even after the project ends.
If you are interested in having information about you and/or your work in this area included in this networking resource, please contact Amanda at firstname.lastname@example.org.