RESUMEN
Increasing American Indian/Alaska Native (AI/AN) representation in genetic research is critical to ensuring that personalized medicine discoveries do not widen AI/AN health disparities by only benefiting well-represented populations. One reason for the under-representation of AIs/ANs in research is warranted research distrust due to abuse of some AI/AN communities in research. An approach to easing the tension between protecting AI/AN communities and increasing the representation of AI/AN persons in genetic research is community-based participatory research. This approach was used in a collaboration between a tribe and academic researchers in efforts to increase AI/AN participation in genetic research. From the lessons learned, the authors propose recommendations to researchers that may aid in conducting collaborative and respectful research with AI/AN tribes/communities and ultimately assist in increasing representation of AIs/ANs in personalized medicine discoveries.
Asunto(s)
Indio Americano o Nativo de Alaska , Investigación Participativa Basada en la Comunidad/organización & administración , Investigación Genética , Medicina de Precisión , Conducta Cooperativa , Competencia Cultural , Diversidad Cultural , Humanos , Participación de los Interesados , Confianza , Estados UnidosRESUMEN
The United States has a trust responsibility to provide services to American Indians and Alaska Native (AI/AN) persons. However, a long-standing history of underfunding of the Indian Health Service (IHS) has led to significant challenges in providing services. Twentieth century laws, including the Snyder Act, Transfer Act, Indian Self-Determination and Education Assistance Act, and Indian Health Care Improvement Act (IHCIA) have had an effect on the way health services are provided. IHCIA was reauthorized as part of the Patient Protection and Affordable Care Act (ACA). Several provisions in ACA allow for potential improvements in access to services for AI/AN populations and are described herein. Although policy developments have been promising, IHS underfunding must be resolved to ensure improved AI/AN health.