Seeking consent for research with indigenous communities: a systematic review
Emily F M Fitzpatrick1,2,3, Alexandra L C Martiniuk4,5,6, Heather D'Antoine7
1Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, Australia. emilyfitzp@gmail.com.
BMC Medical Ethics
|October 25, 2016
Summary
Seeking research consent from Indigenous populations requires community and individual agreement. Further consultation is needed to establish effective methods and evaluation processes for informed consent.
Area of Science:
- Indigenous Studies
- Bioethics
- Research Methodology
Background:
- Research with Indigenous populations necessitates consent from both individuals and their communities.
- Existing literature lacks comprehensive guidance on methods for obtaining this consent.
Purpose of the Study:
- To systematically search and summarize the literature on methods for seeking consent in research involving Indigenous populations.
- To identify and review existing guidelines for ethical research and consent processes with Indigenous peoples.
Main Methods:
- A systematic literature search was performed to identify relevant articles.
- Included articles were categorized into original research evaluating consent, publications detailing consent processes, and ethical guidelines.
- Guidelines were further classified by their scope: international, national, and state/regional/local.
Main Results:
- Of 56 included articles, 5 evaluated consent processes, 13 detailed methods (e.g., interpreters, multimedia), and 38 provided ethical guidelines.
- While some Indigenous organizations offer community-designed resources, none have been evaluated.
- Ethical guidelines emphasize Indigenous values but lack specific engagement or consent procedures.
Conclusions:
- Consultation with Indigenous communities is essential to develop and evaluate appropriate methods for obtaining community and individual consent.
- There is a need for clearly defined and evaluated processes for seeking informed consent in research with Indigenous populations.
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