Journal article
Perspective: The Case for Research Justice: Inclusion of Patients With Limited English Proficiency in Clinical Research
Academic medicine, v 86(3), pp 389-393
01 Mar 2011
PMID: 21248607
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Persons with limited English proficiency (LEP) constitute a growing portion of the U. S. population, yet they are underrepresented in clinical research. This inherently limits the societal benefits of the research and its generalizability to ethnic populations living in the United States. To illustrate the complexity associated with including LEP participants in clinical research, the authors critically evaluated LEP consent requirements posted on the Web sites of 134 academic health centers in March 2008. They found wide variability with regard to consent policies and striking interinstitutional differences in posted IRB policies and attitudes toward consent of LEP patients in research. The authors argue this variation highlights competing concerns between autonomy and justice. Outcomes-based justice requires inclusion of LEP patients in the research, yet the consent process is often resource-intensive and complex. The authors suggest that more uniform and specific guidance from federal agencies for enrollment of LEP patients in clinical research be established and that this guidance explicitly recalibrate the current balance between autonomy and justice. Investigators and institutional review boards should also develop streamlined best practices to reduce unnecessary effort and expense associated with recruitment of LEP individuals. LEP individuals should have fair access to clinical research in order to fully realize individual and societal benefits of their participation and to ensure the generalizability of scientific discovery.
Metrics
Details
- Title
- Perspective: The Case for Research Justice: Inclusion of Patients With Limited English Proficiency in Clinical Research
- Creators
- Seth W. Glickman - University of North Carolina at Chapel HillAdanma Ndubuizu - University of North Carolina at Chapel HillKevin P. Weinfurt - University of North Carolina at Chapel HillCarol D. Hamilton - University of North Carolina at Chapel HillLawrence T. Glickman - University of North Carolina at Chapel HillKevin A. Schulman - University of North Carolina at Chapel HillCharles B. Cairns - University of North Carolina at Chapel Hill
- Publication Details
- Academic medicine, v 86(3), pp 389-393
- Publisher
- Lippincott Williams & Wilkins
- Number of pages
- 5
- Grant note
- NIH Roadmap for Medical Research; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA 1 UL1 RR024128-01 / National Center for Research Resources (NCRR), National Institutes of Health (NIH); United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Center for Research Resources (NCRR) UL1RR024128 / NATIONAL CENTER FOR RESEARCH RESOURCES; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Center for Research Resources (NCRR)
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- College of Medicine
- Web of Science ID
- WOS:000287690700031
- Scopus ID
- 2-s2.0-79952186484
- Other Identifier
- 991021448192004721
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Education, Scientific Disciplines
- Health Care Sciences & Services