Multicomponent Informed Consent with Marshallese Participants

J Empir Res Hum Res Ethics. 2021 Jul;16(3):144-153. doi: 10.1177/15562646211005651. Epub 2021 Mar 29.

Abstract

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.

Keywords: Pacific Islanders; community-based participatory research; consent; research ethics; secondary health data.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Community-Based Participatory Research*
  • Humans
  • Informed Consent
  • Language*
  • Native Hawaiian or Other Pacific Islander
  • United States