Genomic Research and American Indian Tribal Communities in Oklahoma: Learning From Past Research Misconduct and Building Future Trusting Partnerships
Year: 2019
Type: article
Abstract: Research misconduct and consequential harms have been inflicted upon American Indian/Alaska Native communities for decades. To protect their people and culture and to retain oversight over research, many Native communities have established tribal health research and institutional review boards. The Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY) Study showcases a successful, trusting research collaboration with tribal nations and academic investigators in Oklahoma. In 2006, the TODAY Study investigators proposed a modification of the study protocol to collect biological specimens from participants for genomic analyses and indefinite storage. Partnering American Indian tribal nations elected not to participate in the genomics collection and repository proposal. Reasons included 1) protection of cultural values, 2) concerns regarding community anonymity, 3) a potential threat to tribal services eligibility, 4) broad informed consent language, and 5) vague definitions of data access and usage. The nations believed the proposed genomics analyses presented a risk of harm to their people and nations without clear benefit. Since the 2006 proposal and the advancement of genomics research, many tribal communities in Oklahoma, appreciating the potential benefits of genomic research, are developing policies regarding oversight of/access to data and biological specimens to mitigate risks and provide members and communities with opportunities to participate in safe and meaningful genomic research.
Source: American Journal of Epidemiology
DOI: 10.1093/aje/kwz062
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
Funders: Massachusetts General Hospital, Yale University, Children's Hospital of Philadelphia, Children's Hospital Los Angeles, Washington University in St. Louis, Case Western Reserve University, National Institutes of Health, Office of the Director, University of Oklahoma Health Sciences Center, University of Colorado Denver, Washington University School of Medicine in St. Louis, Bureau of Indian Affairs, National Human Genome Research Institute, National Institute of Diabetes and Digestive and Kidney Diseases, National Center for Research Resources, NIH Clinical Center, Children's Hospital of Pittsburgh
Awards: G130883262, Management of Pediatric Type 2 Diabetes Mellitus, G1650331929, G1711233980, G1789861183, G1824217007, G2078309758, Case Western Reserve University/Cleveland Clinic CTSA (UL1), G246532802, G299222429, G3029844320, Harvard Clinical and Translational Science Center (UL1), General Clinical Research Center, G3499161329, G37193284, University of Pittsburgh Clinical and Translational Science Institute, G3770033996, G3832661877, Type 2 Diabetes in Youth: Beta Cell Preservation, G413336477, G426894015, G4412971278, G475936976, G4884696667, Institutional Clinical and Translational Science Award, G554783770, G5640239032, General Clinical Research Center, General Clinical Research Center, Washington University Institute of Clinical and Translational Sciences (UL1), Yale University Clinical and Translational Science Award Program, G862824631, G9000071235, G9000109397, G9000259551, G903953877, Colorado Clinical and Translational Science Institute (UL1)
OpenAlex ID: W2941664555