What Scientists Should Understand About Working With Indigenous Peoples

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The Ohio State University Wexner Medical Center

Preparing for Genomic Research Among Indigenous People: What Scientists Need to Know – Jeffrey Collmann, PhD; Director, O’Neill Institute for National and Global Health Law, Georgetown University. As presented at Ohio State's Personalized Health Care National Conference.

Santé & Médecine Technologie

What scientists should understand about working with indigenous peoples Jeff Collmann, PhD

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© Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 9(2) 2011 323 “No Lone Person:” The Ethics Consent Process as an Ethical Dilemma in Carrying out Community- based Participatory Research with a First Nations Community1 Fay Fletcher Lola Baydala Liz Letendre Lia Ruttan Stephanie Worrell Sherry Letendre Tanja Schramm Abstract Carrying out informed consent is considered an essential aspect of ethical research practice. However, carrying out consent raises complex issues in Aboriginal communities where involvement in research has involved risk and where protocol for consent starts with the community. Based on our experience as explored in a focus group, we discuss challenges faced and les- sons learned while obtaining informed consent from parents/guardians of 1. Acknowledgements: The authors wish to acknowledge the work of community Elders who made significant contributions to adapting and delivering this program, including Bella Alexis, Ida Alexis, Jean Alexis, Rosalie Alexis, Stanley Alexis, Angela Jones, Effie Kootenay, Helen Letendre, Nancy Potts, and Paul Potts. This research was conducted as part of a larger project funded by the Canadian Institute of Health Research and the Alberta Centre for Child, Family and Community Research. 324 © Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 9(2) 2011 community children for a school based, health intervention research project which took place at the request of the Alexis Nakota Sioux Nation located in western Canada. Ongoing ethical dilemmas and issues of consent as per- ceived by both the community and by the university ethics board were dis- cussed along with possible solutions. Recommendations for managing ethical consent in research with Aboriginal communities are presented along with the need to find an “ethical space” (Ermine, 2007) where solutions can be developed. Keywords: ethics, ethical dilemmas, informed consent, parental consent, First Nations, Aboriginal Based on concern for justice, risk assessment, dignity, and autonomy of par- ticipation, academic research requires review by a University Research Ethics Board (REB) in Canada, or an Institutional Review Board (IRB) in the United States. REBs review potential harm as weighed against potential research benefit to individuals, communities, or the larger public and require re- searchers to attain informed consent from individual research participants (Beauchamp and Childress, 2001; Canadian Institutes of Health Research (CIHR), Natural Sciences and Engineering Research Council (NSERC) of Canada, and Social Sciences and Humanities Research Council (SSHRC) of Canada, 2010). The principles of both community-based participatory research (CBPR) and the guidelines for ethical research with Aboriginal2 communities emphasize that the research process comply not only with academic standards but with the ethical values of the community where the resea.

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