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Pacific, research ethics, tissue banking, tissue donation
Donation of human tissue is essential for biomedical research to improve our understanding of the causes and treatment of diseases. To facilitate this, researchers need to understand what approaches and processes make donation and storage more acceptable for various communities. This study explores the perspectives of Pacific peoples living in Dunedin, New Zealand on the use of human tissues for biomedical research.
In April 2018, four focus groups (total of 18 participants) were held with members of the Pacific community in Dunedin. Each group was demographically different, with groups consisting of; elders of mixed ethnicity, university students, medical doctors and one Tongan group of mixed ages. An open-ended questioning style was used, with specific prompts about participant’s perceptions of the purpose and processes for donating tissues for research and things that might make them more or less likely to donate.
There were a diverse range of views expressed, reflecting the diversity of participants across different ethnicities and ages. While participant responses varied widely in terms of enthusiasm or caution towards different types of donation, similar themes emerged regarding the importance of detailed informed consent, and respect and trust towards both the donors and/or their tissues. The importance of culture and religion on the attitudes or perspectives towards donation was also highlighted. Finally, it was perceived that donation is likely to be more acceptable if researchers are able to explain why their work is meaningful in a Pacific context and adapt to Pacific situations and/or concerns within the research protocols.
For Pacific peoples to derive the most benefit from research initiatives it is important that processes to collect human tissue are respectful of cultural protocols and expectations to support participation. This study provides useful information to support the evolution of guidelines within the NZ research context.
2. Dang JH, Chen Jr MS. Time, trust, and transparency: Lessons learned from collecting blood biospecimens for cancer research from the Asian American community. Cancer 2018;124:1614-21.
3. Kowal E, Greenwood A, McWhirter RE. All in the blood: A review of Aboriginal Australians’ cultural beliefs about blood and implications for biospecimen research. Journal of Empirical Research on Human Research Ethics 2015;10(4):347-59.
4. Haring RC, Henry WA, Hudson M, et al. Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse). Journal of Cancer Education 2018;33(1):44-51.
5. Taniguchi NK, Taualii M, Maddock J. A comparative analysis of indigenous research guidelines to inform genomic research in indigenous communities. The International Indigenous Policy Journal 2012;3(1):6.
6. New Zealand Government. Human Tissue Act. Wellington, 2008.
7. Hudson M, Roberts M, Smith LT, et al. Perspectives on the use of embryos in research. AlterNative: An International Journal of Indigenous Peoples 2010;6(1):54-65.
8. Hudson M, Southey K, Uerata L, et al. Key informant views on biobanking and genomic research with M?ori. 2016
9. Hudson ML, Ahuriri-Driscoll AL, Lea MG, et al. Whakapapa–A Foundation for Genetic Research? Journal of Bioethical Inquiry 2007;4(1):43-49.
10. Beaton A, Smith B, Toki V, et al. Engaging Maori in biobanking and genetic research: Legal, ethical, and policy challenges. The International Indigenous Policy Journal 2015;6(3):1.
11. Hudson ML, Russell K. The Treaty of Waitangi and research ethics in Aotearoa. Journal of Bioethical Inquiry 2009;6(1):61-68.
12. Hudson M, Milne M, Reynolds P, et al. Te Ara Tika: Guidelines for M?ori research ethics: A framework for researchers and ethics committee members. Auckland: Health Research Council of New Zealand 2010
13. Ministry of Health. Review of the regulation of human tissue and tissue-based therapies: Submissions summary. Wellington, 2004.
14. Taualii M, Davis EL, Braun KL, et al. Native Hawaiian views on biobanking. Journal of cancer education 2014;29(3):570-76.
15. Kwan P, Briand G, Lee C, et al. Reservations to participate in biospecimen research among Pacific Islanders. Californian journal of health promotion 2015;13(3):27.
16. Kwan PP, Briand G, Lee C, et al. Use of a community-based participatory research approach to assess knowledge, attitudes, and beliefs on biospecimen research among Pacific Islanders. Health promotion practice 2014;15(3):422-30.
17. Kwan PP, Sabado-Liwag M, Tan N, et al. A Community-Based Approach to Biospecimen Collection Among Pacific Islanders. Health promotion practice 2018:1524839918786222.
18. Tan NS, Custodio H, LaBreche M, et al. Biospecimen Education Among Pacific Islanders in Southern California. Journal of Cancer Education 2018:1-8.
19. Fong M, Braun KL, Chang R. Native Hawaiian preferences for informed consent and disclosure of results from research using stored biological specimens. Pac Health Dialog 2004;11(2):154-59.
20. Fong M, Braun KL, Chang RM. Native Hawaiian preferences for informed consent and disclosure of results from genetic research. J Cancer Educ 2006;21(1 Suppl):S47-52.
21. University of Otago. Pacific Research Protocols. Dunedin, 2011.
22. Vaioleti TM. Talanoa research methodology: A developing position on Pacific research. Waikato Journal of Education 2006;12
23. Thomas DR. A general inductive approach for analyzing qualitative evaluation data. American journal of evaluation 2006;27(2):237-46.