Multicomponent Informed Consent with Marshallese Participants

Pacific Islanders are the second fastest-growing population in the United States; however, Pacific Islanders, and Marshallese specifically, are underrepresented in health research. A community-based participatory research (CBPR) approach was used to engage Marshallese stakeholders and build an acade...

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Bibliographic Details
Published in:Journal of empirical research on human research ethics 2021-07, Vol.16 (3), p.144-153
Main Authors: Purvis, Rachel S., Ayers, Britni L., Bogulski, Cari A., Kaminicki, Kyle F., Haggard-Duff, Lauren K., Riklon, Lynda A., Iban, Anita, Mejbon-Samuel, Rotha, Lakmis, Rumina, Riklon, Sheldon, Thompson, Joseph W., McElfish, Pearl A.
Format: Article
Language:English
Subjects:
Community-Based Participatory Research - statistics & numerical data
Empirical Studies on Informed Consent
Humans
Informed consent
Informed Consent - statistics & numerical data
Language
Native Hawaiian or Other Pacific Islander - statistics & numerical data
Pacific Islander people
Participatory research
Personal health
Research ethics
United States
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Summary:Pacific Islanders are the second fastest-growing population in the United States; however, Pacific Islanders, and Marshallese specifically, are underrepresented in health research. A community-based participatory research (CBPR) approach was used to engage Marshallese stakeholders and build an academic-community research collaborative to conduct health disparities research. Our CBPR partnership pilot tested a multicomponent consent process that provides participants the option to control the use of their data. Consent forms used concise plain language to describe study information, including participant requirements, risks, and personal health information protections, and were available in both English and Marshallese. This study demonstrates that when provided a multicomponent consent, the vast majority of consenting study participants (89.6%) agreed to all additional options, and only five (10.4%) provided consent for some but not all options. Our description of the development and implementation of a multicomponent consent using a CBPR approach adds a specific example of community engagement and may be informative for other indigenous populations.
ISSN:1556-2646
1556-2654
1556-2654
DOI:10.1177/15562646211005651