Hostname: page-component-848d4c4894-2xdlg Total loading time: 0 Render date: 2024-06-14T19:48:59.492Z Has data issue: false hasContentIssue false

Entwined Processes: Rescripting Consent and Strengthening Governance in Genomics Research with Indigenous Communities

Published online by Cambridge University Press:  01 January 2021

Abstract

Image of the first page of this content. For PDF version, please use the ‘Save PDF’ preceeding this image.'
Type
Independent Articles: Commentary
Copyright
Copyright © American Society of Law, Medicine and Ethics 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Prictor, M. et al., “Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making,” Journal of Law, Medicine & Ethics 48, no. 1 (2020): 205217.CrossRefGoogle Scholar
Garrison, N.A. et al., “Genomic Research Through an Indigenous Lens: Understanding the Expectations,” Annual Review of Genomics and Human Genetics 20, no. 1 (2019): 495517 (2019); Hart, S. and Sobraske, K., “Investigative Report Concerning the Medical Genetics Project at Havasupai” (Arizona State University Law Library, 2003); Mello, M.M. and Wolf, L.E., “The Havasupai Indian Tribe Case — Lessons for Research Involving Stored Biologic Samples,” New England Journal of Medicine 363, no. 3 (2010): 204–207; Hook, G.R., “Warrior Genes’ and the Disease of Being Maori, Mai Review 2 (2009): 1–11; Wiwchar, D., “Nuu-Chah-Nulth Blood Returns to West Coast,” Ha-Shilth-Sa Newsletter 31, no. 3 (2004).CrossRefGoogle Scholar
Bustamante, C.D., Burchard, E.G., and De la Vega, F.M., “Genomics for the World, Nature 475, no. 7355 (2011): 163165; Need, A.C. and Goldstein, D.B., “Next Generation Disparities in Human Genomics: Concerns and Remedies,” Trends Genet 25, no. 11 (2009): 489–494; Popejoy, A.B. and Fullerton, S.M., “Genomics is Failing on Diversity,” Nature 538, no. 7624 (2016): 161–164; Mills, M.C. and Rahal, C., “A Scientometric Review of Genome-Wide Association Studies,” Communications Biology 2, no. 9 (2019): 1–11CrossRefGoogle Scholar
Hudson, M. et al., “Key Informant Views on Biobanking and Genomic Research with Maori,” New Zealand Medical Journal 129, no. 1447 (2016): 2942; Tauali’i, M. et al., “Guidelines for Successful Engagement to Discuss Biobanking among Native Hawaiians,” Journal of Cancer Education 29, no. 3 (2014): 570–576.Google Scholar
Hudson, M., “Think Globally, Act Locally: Collective Consent and the Ethics of Knowledge Production,” International Social Science Journal 60, no. 195 (2009): 125133.CrossRefGoogle Scholar
Rainie, S.C., Rodriguez-Lonebear, D., and Martinez, A., Policy Brief: Data Governance for Native Nation Rebuilding (Version 2)(2017), available at <https://usindigenousdata.org/policy-briefs> (last visited March 12, 2020); Kukutai, T., and Taylor, J., in Indigenous Data Sovereignty: Toward An Agenda eds Kukutai, T. and Taylor, J. (Australian National University Press, 2016): 7997; Snipp, M. in Indigenous Data Sovereignty: Toward An Agenda eds Kukutai, T. and Taylor, J. (Australian National University Press, 2016): 39-56.Google Scholar
Garrison, N.A. et al., “Genomic Research Through an Indigenous Lens: Understanding the Expectations,” Annual Review of Genomics and Human Genetics 20 (2019): 495517; National Congress of American Indians, Genetics Research and American Indian and Alaska Native Communities (2012), available at <http://genetics.ncai.org/> (last visited Febraury 25, 2020); Jacobs, B. et al., “Bridging the Divide between Genomic Science and Indigenous Peoples,” The Journal of Law 38, no. 3 (2010): 684–696; Akst, J., “San People Write Ethical Code for Research,” The Scientist (2017), available at <https://www.the-scientist.com/the-nutshell/san-people-write-ethical-code-for-research-31810> (last visited February 25, 2020); Arbour, L. and Cook, D., “DNA on Loan: Issues to Consider when Carrying Out Genetic Research with Aboriginal Families and Communities,” Community Genetics 9, no. 3 (2006): 153–160.CrossRefGoogle Scholar
Claw, K.G. et al., “A Framework for Enhancing Ethical Genomic Research with Indigenous Communities,” Nature Communities 9, no. 1 (2018), article 2957; Bardill, J. et al., “Advancing the Ethics of Paleogenomics,” Science 360, no. 6387 (2018): 384–385.Google Scholar
Research Data Alliance International Indigenous Data Sovereignty Interest Group, CARE Principles for Indigenous Data Governance (2019), available at <https://www.gida-global.org/care> (last visited February 25, 2020).+(last+visited+February+25,+2020).>Google Scholar