Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States

Abstract

Background

This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.

Methods

We adapted democratic deliberation, an approach to stakeholder engagement, for use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.

Results

A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.

Conclusion

The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described.

Keywords:

• Genomics
• deliberation
• American Indian
• Alaska Native
• community engagement
• ELSI

Acknowledgements

We would like to thank those who participated in the deliberations who made this work possible and for reasons of confidentiality remain anonymous. Deliberations are only as good as the people who choose to take time out of their busy lives to come together, listen, talk, and learn from one another. We are grateful for what we learned from each of them.

Disclosure statement

The authors report no conflict of interest.

Additional information

Funding

This research was supported by the National Human Genome Research Institute of the National Institutes of Health, grant numbers RMHG009042 (P.G.S.), R01HG009500 (V.Y.H.), and R25HG010132 (J.W.B.) and the National Institute of General Medical Services, Native American Research Centers for Health (NARCH) S06GM123545 (V.Y.H.) and IDeA-CTR grant in Oklahoma, U54GM104938 (P.G.S.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.