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Culture in Diabetes Translation Research: An Opportunity

Culture in Diabetes Translation Research: An Opportunity. Dr. Malia Villegas, Director NCAI Policy Research Center WUSTL CDTR Scholar Seminar March 21, 2013 St. Louis, MO. Foundational Steps. Develop a working concept of ‘culture’

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Culture in Diabetes Translation Research: An Opportunity

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  1. Culture in Diabetes Translation Research:An Opportunity Dr. Malia Villegas, Director NCAI Policy Research Center WUSTL CDTR Scholar Seminar March 21, 2013 St. Louis, MO

  2. Foundational Steps • Develop a working concept of ‘culture’ • By definition translation happens at the nexus of cultures (e.g., institutional, paradigmatic, disciplinary) • Identify various ‘cultures’ your work touches on • Explore how culture matters in your work (e.g., is it the same as race; is it individual/institutional; does it have implications for research design/implementation/outcomes) • Understanding roles and responsibilities

  3. Taking Up Culture Means… • Being open to community governance structures • Gateways, Gatekeepers, & Guides (your role may not always be fixed) • Fit of the intervention may be greatly improved by embracing a different approach/process of research oversight • Taking SDPI example a step further • Being willing to think in complex, nuanced, contextual ways about the ‘nature of the health issue’ • Deficit/Disparities vs. Strengths/Possibilities • Individual Behaviors vs. Systemic Dynamics • Co-occurring conditions • Human Health vs. Environmental Health

  4. Taking Up Culture Means… • Working towards outcomes that are relevant and meaningful to local priorities [and embracing the notion that this can actually strengthen the ‘science’]. • Publication & Replication (sharing/adapting/tailoring to local needs) • Planning for Sustainability (growing local capacity for research) • Changing Local Attitudes Toward Research • Reducing Stigma • Strengthening Ethics Processes

  5. We have an opportunity here… To strengthen the science To improve the fit for AI/AN communities Toward eliminating diabetes

  6. Tribal Community Responses • Moratorium on genetics research • Increased tribal research regulation and review processes • Community-based models of biological data management As Native peoples, what are our responsibilities in considering new health-related technologies?

  7. Emergent Complexities • Addressing Individual & Community Consent • Scope of Community Consent • Urban Communities • Regional Councils • Comparative Studies • Tribes as ‘Participants’ vs. ‘Researchers’

  8. Research Community Responses • Increased funding for community-based approaches in research and data sharing (e.g., CBPR and translation science) • Parallel emphasis on relieving researcher burden and compelling data sharing • Ongoing disinclusion of AI/AN subsamples in national studies As a federal agency, what is NIH’s responsibility to serve tribal communities?

  9. Other Areas of Concern • Role of pharmaceutical companies • Dr. Ioannidis – Stanford • Changing nature of privacy • Frontiers of science • Identifying individuals from a DNA sequence • Human Microbiome Project

  10. Need for a National Policy:Indigenous Research Ethics Source: Sharp & Foster (2002)

  11. Contact Information WWW.NCAIPRC.ORG Dr. Malia Villegas Director, NCAI Policy Research Center mvillegas@ncai.org (202) 466-7767 x 228

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