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EthicsCaseStudyForm edit

Title The Right to Participate in Research
Long Title The Right to Participate in Research
Contributor/Contact John Banja, PhD? (jbanja@emory.edu)
Contributor Details John Banja, PhD?
Director, Section on Ethics in Research
Atlanta Clinical and Translational Science Institute
Emory University
Atlanta, GA 30322
CTSA Emory
Case Study Provided We were conducting a pilot study in an area of the U.S. that had a large Hispanic population. I must emphasize that this was a “very” pilot project, funded entirely by our department. The data being gathered were extremely preliminary and would not benefit research participants in any way. In fact, it would probably be more correct to say that this was a “pre-pilot” study although it was approved by our IRB, of course.

The problem occurred when Hispanic, would-be enrollees started showing up in our research offices without a consent form. This would occasionally happen because the informed consent translator would not be available, and the participants would be sent directly to research. But when that happened, we had no one available in the research unit to go over or “translate” the Spanish consent form into something the participants could understand. (Many of them were illiterate.)

Because this became increasingly problematic, we decided to exclude Hispanics from the study altogether. A member of our research team was disturbed by this, however, saying that we were denying this population a possible “benefit.” Furthermore and intuitively, the wholesale exclusion of Hispanics certainly sounded discriminatory.

I continue to wonder about this. Is there a right or a duty to participate in research? Was our exclusion of Hispanics in this study ethically defensible?
Data Acquisition, Management, Sharing and Ownership Topics

Mentor and Trainee Responsibilities Topics

Publication Practices and Responsible Authorship Topics

Peer Review Topics

Collaborative Science Topics

Research Misconduct Topics

Conflicts of Interest, Law and Policy Topics

Human Subjects Human subjects research

URL http://www.actsi.org/areas/erks/ethics/index.html
RCR Keyword

Other RCR Keywords Consent Form; Department Funded; Discriminatory; Hispanic Population; Illiterate ; Informed Consent Translator; IRB; Minority Groups; Participant Recruitment; Pilot Study; Research Team; Spanish Consent Form
Type of Case

Source for Topic Areas Du Bois, J., & Dueker, J. (2009). Teaching and Assessing the Responsible Conduct of Research: A Delphi Consensus Panel Report. Journal of Research Administration, 40(1), 49-70.


Topic revision: r1 - 28 Oct 2011 - 16:27:50 - DebieSchilling
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