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(US) Informed Consent in the U.S. Indigenous Peoples Context: A Systematic Literature Review (Papers: Tasha Gross & Clarita Lefthand-Begay | February 2021)

Posted by Dr Gary Allen in Human Research Ethics on February 22, 2021
Keywords: Beneficence, Consent, Culture, First People, International, Justice, Protection for participants, Respect for persons

The Linked Original Item was Posted On February, 13 2021

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Abstract
BACKGROUND:
Tribal communities in the United States (U.S.) have a long history of subjection to unethical and exploitive medical and research practices. Today, many Tribal nations are establishing procedures in order to protect themselves from further harm and to advance culturally informed research practices. These procedures are also meant to ensure that their communities benefit from research conducted within their communities. Informed consent is a key element in protecting human subjects, but it may not be sufficient in the tribal context, as its conception is rooted in Western understandings of protection. Specifically, the informed consent emphasizes the individual, rather than the community as a whole, which is just as important in the context of conducting research with Native communities.

METHODS:

An interesting Creative Commons paper about approaching consent within the frame of cultural consultation and respect.

We conduct a systematic literature review to answer two related questions: How is informed consent being conceived of by U.S. tribes? And how is informed consent being required by U.S. tribes? Our inclusion criteria include articles focusing on informed consent within the U.S. tribal context, written in English in 2010-2020. Articles that did not fit our inclusion criteria were excluded. Two reviewers independently reviewed and coded 30 peer-reviewed articles by using content analysis and, in an iterative process, agreed on emerging codes and themes.

RESULTS:
A number of themes arise in the selected literature, including the conception of informed consent as a process, its operation at various levels (individual, collective, and government-to-government), possible alternatives to informed consent, and the need for specificity about ownership of samples and data, benefits and/or risks, and the methods and procedures that researchers use in the course of study.

CONCLUSIONS:
Our key results point to a need for clear and transparent information for prospective research participants and for consent forms and processes to include the collective, as well as the individual. This will better align with the cultural values and political standing of sovereign tribes in the U.S.

KEYWORDS:
Informed Consent, Literature Review, Tribes, Native American, Indigenous Peoples, Research Ethics, AI/AN, Human Subjects Research

Gross, T & Lefthand-Begay, C (2021) Informed Consent in the U.S. Indigenous Peoples Context: A Systematic Literature Review. BMC Medical Ethics. https://doi.org/10.21203/rs.3.rs-227951/v1
This work is licensed under a CC BY 4.0 License. Read Full License: https://www.researchsquare.com/article/rs-227951/v1

Related Reading

(Australia) Research with Indigenous people – procedural and practical ethical consent – Indigenous Leadership – Charles Darwin University (Sarah Ireland | July 2016)

Research Ethics and Indigenous Peoples 101 (Speaker: Linda Tuhiwai Smith | February 2020)

First Nations Cultural and Intellectual Property in the Arts

An Antiracist Framework for Scholarly Publishing – Scholarly Kitchen (Niccole Coggins, et al | August 2020)

Inclusion of Culturally and Linguistically Diverse populations in Clinical Trials:

 For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection – UnDark (Adrian Pecotic | September 2019)

Aboriginal genome analysis comes to grips with ethics – Nature (Ewen Callaway | September 2011)

Research ethics, informed consent and the disempowerment of First Nation peoples (Papers: Juan M Tauri | 2017)

Justice in Human Research Ethics: A Conceptual and Practical Guide

How do we ‘do’ consent?

Indigenous Data Sovereignty (Books: Edited by Tahu Kukutai and John Taylor | November 2016)

Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation (Vanessa Y. Hiratsuka, et al | 2017)

Research, Ethics and Indigenous Peoples: An Australian Indigenous perspective on three threshold considerations for respectful engagement (Ambelin Kwaymullina | 2016)

Ethics and the Participation of Indigenous Children and Young People in Research

The vulnerable object of Indigenous research ethics (Papers: Emma Kowal 2014)

Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (2014)

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