Raising awareness of issues around Hawaiian involvement in genetic and genomic research for medical purposes.
Papa Ola Lōkahi, in partnership with ‘Ahahui o nā Kauka, Association of Native Hawaiian Physicians, has embarked on an campaign to raise awareness of issues around Hawaiian involvement in genetic and genomic research for medical purposes. We have begun by introducing a series of presentations on Hawaiian Genomics in the fall of 2020, and we are providing a reading list below. Eventually, we will be reaching out to Hawaiian communities for guidance. Meanwhile, check back here regularly to catch up on the resources so that you and yours are able to make informed recommendations.
Part 1
Part 2
Part 3
Part 4
Resources
- Why genetic research must be more diverse, Keolu Fox. July 15, 2016
- Driving Change: Priming the Navajo Nation Genetic Research Development, Jamie Henio, Walter Phelps and Frank Sage. June 26, 2019
- Indigenizing Genomics – Enhancing genomic research through an indigenous perspective. NCAI Science and Sovereignty. June 29, 2016
- Biospecimens and Data Sharing Considerations for Native Peoples. Nanibaa A. Garrison. June 28, 2015
- Native Peoples and Genetic Research 14: Keolu Fox. July 22, 2014
Reading List
- National Indian Health Board (2020). To Call Upon the NIH to Consult with Tribal Nations and Establish Policies and Guidance for Tribal Oversight of Data on Tribal Citizens Enrolled in the All Of Us Research Program. NIHB Resolution 20-04.
- Fox, K (2020) The Illusion of Inclusion — The “All Of Us” Research Program and Indigeous Peoples’ DNA. New England Journal of Medicine 383 (5): 411–13.
- Garrison NA, Hudson M, Ballantyne LL, Garba I, Martinez A, Taualii M, et al. (2019). Genomic Research Through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics 20:495-517.
- Fox K, Hawks J (2019). Using ancient remains more wisely. Nature 572, 581-583.
- Kaiser, J (2019). Native American groups wary of big US biobank. Science 364(6443): 812-813.
- Guglielmi, G (2019). Facing up to injustice in genome science. Nature 568(7752), 290–293.
- Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K, Garrison NA et al. (2018). A framework for enhancing ethical genomic research with Indigenour communities. Nature Communications 9, 2957.
- All Of Us Tribal Collaboration Working Group (2018). Consideration for Meaningful Collaboration with Tribal Populations. NIH All Of Us Research Advisory Group.
- Lindo J, Herta-Sanchez E, Nakagome S, Rasmussen M, Petzelt B et al. (2016). A time transect ox exomes from a Native American population before and after European contact. Nature Communications 7, 13175.
- NCAI Policy Research Center (2012). American Indian and Alaska Native Genetics Research Resource Guide: Tools for Tribal Leaders and Citizens.
- Taualii M, Davis EL, Braun KL, Tsark JU, Brown N, Hudson M, Burke W (2014). Native Hawaiian Views on Biobanking. Journal of Cancer Education 29(3): 570-576.
- Ka ‘Aha Pono (2005) Paoakalani Declaration.
- Fong M, Braun KL, Chang RM (2004). Native Hawaiian preferences for informed consent and disclosure of results from research using stored biological specimens. Pacific Health Dialog 11(2): 154-9.
Program Staff
Samantha Keaulana Scott, PhD
she/her/ʻo ia
Director, Data, Research & Evaluation
Melissa Kahili-Heede
she/her/ʻo ia
Research Program Coordinator
Kilohana Haitsuka
Research Program Coordinator
Mahinalani Cavalieri
Data & Research Specialist
Contact
manao@papaolalokahi.org
(808) 597-6550
