Abstract
The informed-consent process seeks to provide complete information to participants about a research project and to protect personal information they may disclose. In this article, we present an informed-consent process that we piloted and improved to obtain consent from older adults in Yucatan, Mexico. Respondents had limited fluency in Spanish, spoke the local Mayan language, and had some physical limitations due to their age. We describe how we adapted the informed-consent process to comply with U.S. and Mexican regulations, while simplifying the forms and providing them in Spanish and Mayan. We present the challenges and lessons learned when dealing with low-literacy older populations, some with diminished autonomy, in a bilingual context and a binational approach to the legal framework.
Highlights
Ethical and legal considerations require that human subjects who participate in research do so under informed consent
During the debriefing sessions held by project and field staff after the first pilot test, it became obvious that many participants were intimidated by the consent form and process
While field-testing of instruments and processes can be challenging for projects with time and budget constraints, we found it to be vital in ensuring that our project was conducted with both ethical and methodological rigor
Summary
Ethical and legal considerations require that human subjects who participate in research do so under informed consent. Gaining informed consent may be complicated for populations with low levels of literacy, limited language fluency, or different cultures than researchers (Kripalani, Bengtzen, Henderson, & Jacobson, 2008). It may be even more difficult when working with the elderly, persons in rural areas, or places where a required signature on a document may cause anxiety or suspicion about the intentions of those requesting it (Wendler, 2004). Informed consent did not become routine practice until the 1960s, and was not enforced until Pappworth (1967) in the United Kingdom and Beecher (1966) in the United States published details of prevalent unethical exploitation of “marginalized minority groups” in experiments “without their knowledge or consent.” Informed-consent guidelines were first developed for medical and clinical research, with such guidelines being more standardized than those for social-science research (Beauchamp & Childress, 2012)
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