"We're not just raw material for research": Understanding the Cultural Beliefs of Indigenous Communities to Ensure Culturally-Sensitive Genetic Research Engagement

Abstract

Historical, political, and cultural factors have contributed to the underrepresentation of Indigenous communities in genetic research. Few studies have explored Indigenous perspectives on important factors to promote stronger engagement between researchers and Indigenous communities. This thesis examines Indigenous perspectives to identify the key cultural factors affecting genetic research participation. Semi-structured interviews with health professionals, policy experts, and tribal leaders in the US were analyzed using a modified grounded theory approach and conventional content analysis. An important consideration for an individual's decision to participate in genetic research is influenced by his or her beliefs about genetics and biospecimens; these beliefs are shaped by one's spiritual understandings and cultural teachings. Considerations about the appropriate handling of biospecimens are also important, as people expressed concerns about respectful handling, control and ownership of biological samples, specimen disposal, its intended purpose, and potential health benefits. Researchers can utilize this knowledge to facilitate improved, culturally-sensitive genetic research engagement with Indigenous populations, and the findings can create increased opportunities for advancing the health of Native communities through the clinical benefits of genomics research.