BACKGROUND: Research using stored clinical data and samples held in biobanks has potential to address health disparities in minority communities. However, ethical and cultural considerations about use of these samples for research warrant attention. Literature about how Alaska Native people (ANs) view biobanking research consists largely of theoretical papers and position statements with limited systematic information gathered from a broad range of ANs. OBJECTIVES: To explore the views of biobanking research among AN community members and leaders across Alaska using a community-based participatory research approach with tribal and federal partners. METHODS: We approached tribal health organizations (THOs) to partner and guide the study in their regions. Community liaisons were hired to lead study recruitment. Twenty-nine focus groups were conducted in 14 locations with participation from 82 community members and 81 tribal leaders. Data were analyzed using a grounded theory approach. RESULTS: We identified five themes that contributed to participants' views on biobanking: (1) Prior experiences with research and medical care, (2) stigmatizations, relevance, and applicability, (3) effects of governmental and cultural change, (4) concerns about unknown capability of future technologies, and (5) benefit for future generations. Respondents raised AN-specific cultural concerns along with global ethical concerns alongside the potential promise of research in improving AN health. CONCLUSIONS: This study offers considerations for researchers partnering with AN communities when planning research and public health surveillance projects. Findings also have implications for other minority communities harmed by past research and other societal changes.
BACKGROUND: Research using stored clinical data and samples held in biobanks has potential to address health disparities in minority communities. However, ethical and cultural considerations about use of these samples for research warrant attention. Literature about how Alaska Native people (ANs) view biobanking research consists largely of theoretical papers and position statements with limited systematic information gathered from a broad range of ANs. OBJECTIVES: To explore the views of biobanking research among AN community members and leaders across Alaska using a community-based participatory research approach with tribal and federal partners. METHODS: We approached tribal health organizations (THOs) to partner and guide the study in their regions. Community liaisons were hired to lead study recruitment. Twenty-nine focus groups were conducted in 14 locations with participation from 82 community members and 81 tribal leaders. Data were analyzed using a grounded theory approach. RESULTS: We identified five themes that contributed to participants' views on biobanking: (1) Prior experiences with research and medical care, (2) stigmatizations, relevance, and applicability, (3) effects of governmental and cultural change, (4) concerns about unknown capability of future technologies, and (5) benefit for future generations. Respondents raised AN-specific cultural concerns along with global ethical concerns alongside the potential promise of research in improving AN health. CONCLUSIONS: This study offers considerations for researchers partnering with AN communities when planning research and public health surveillance projects. Findings also have implications for other minority communities harmed by past research and other societal changes.
Authors: Lindsay Fernández-Rhodes; Kristin L Young; Adam G Lilly; Laura M Raffield; Heather M Highland; Genevieve L Wojcik; Cary Agler; Shelly-Ann M Love; Samson Okello; Lauren E Petty; Mariaelisa Graff; Jennifer E Below; Kimon Divaris; Kari E North Journal: Circ Res Date: 2020-06-04 Impact factor: 17.367
Authors: Vanessa Y Hiratsuka; Julie A Beans; Lisa G Dirks; Jaedon P Avey; Karen Caindec; Denise A Dillard Journal: Am Indian Alsk Native Ment Health Res Date: 2018