Engaging Maori in Biobanking and Genetic Research: Legal, Ethical, and Policy Challenges

Abstract

Publically funded biobanking initiatives and genetic research should contribute towards reducing inequalities in health by reducing the prevalence and burden of disease. It is essential that Maori and other Indigenous populations share in health gains derived from these activities. The Health Research Council of New Zealand has funded a research project (2012-2015) to identify Maori perspectives on biobanking and genetic research, and to develop cultural guidelines for ethical biobanking and genetic research involving biospecimens. This review describes relevant values and ethics embedded in Maori indigenous knowledge, and how they may be applied to culturally safe interactions between biobanks, researchers, individual participants, and communities. Key issues of ownership, privacy, and consent are also considered within the legal and policy context that guides biobanking and genetic research practices within New Zealand. Areas of concern are highlighted and recommendations of international relevance are provided. To develop a productive environment for "next-generation" biobanking and genomic research,"‘next-generation" regulatory solutions will be required.

Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities

“…Based on previous negative experiences, [23][24][25] Iwi have clear expectations of recourse for unethical researcher behavior and culturally insensitive research that may include blocking future access by researchers to biospecimens stored within a biobank. It may be beneficial for biobanks to explore different types of relationships with researchers, as preferred by other Indigenous peoples, 26,27 and to establish more formal agreements or contracts to protect against this type of outcome. Research contracts or partnership agreements to prevent the use of biological samples or dissemination of information without the explicit consent of communities could ameliorate risks associated with the interpretation of data in ways that stigmatize or undermine oral histories.…”

“…Improvements can also be made regarding engagement with Māori in the areas of ethical review and funding application processes. 27…”

Foreword

“…Our involvement with genomics has been to engage with Indigenous communities in Aotearoa, New Zealand; identify and discuss CELSI issues (Beaton et al 2015;Hudson, Southey, et al 2016); and build mutual understanding of Māori concepts related to decision-making in the context of genomic research . This work led to the development of the Te Mata Ira Guidelines for Genomics Research with Māori and the He Tangata Kei Tua Guidelines for Biobanking with Māori (Beaton et al 2017;Hudson et al 2016a;Hudson et al 2016b).…”

Te Mata Ira—Faces of the Gene: Developing a cultural foundation for biobanking and genomic research involving Māori

“…Mäori reticence about the use of genetic or genomic technologies has been clearly articulated in the context of genetic modification most stringently in relation to cross-species manipulation involving food (Cram, 2005;Hutchings & Reynolds, 2005a, 2005bRoberts, 2005;Roberts & Fairweather, 2004;Taupo, 2012;Tipene-Matua, 2006). The picture is more nuanced with Mäori support for genomic research and biobanking (Beaton, Smith, Toki, Southey, & Hudson 2015;Hudson, Ahuriri-Driscoll, Lea, & Lea, 2007;Port, 2009;Tawhara, 2006;Tipene-Matua, 2006;Wilcox, 2016) tempered by concerns that researchers may understate the risks and overstate the benefits of genomic research, with minimal contribution towards improving Mäori health outcomes (Cram, 2005;Du Plessis et al, 2004;Rochford, 2012;C. Smith & Reynolds, 2000).…”