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EthicsCaseStudyForm edit

Title Making It Harder to Say "No"
Long Title Making It Harder to Say "No"
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 This dilemma occurred when I was completing my master’s degree. I was collecting data in a very impoverished country, whose culture and language were immensely different from mine (i.e., the U.S). I signed onto the project shortly after the research proposal had been developed, funding was secured, and the protocol was vetted by both my university's IRB and the host country's. My job was to choose the site, recruit and retain subjects, and obtain baseline and endline blood samples.

We experienced recruitment problems right away. Many of our participants were illiterate, and so had to have the consent form read and explained. Also, some distrusted us and thought we were there to harm them.

At the study's end, it was necessary to collect blood samples. We had lost about 15 percent of the original sample for various reasons and therefore needed samples from all those still enrolled. I wasn't worried, though. I was confident we had assured those participants who might initially have had doubts about participating, and all the participants benefited from getting extra medical care and, often, free medicine. We also held ceremonies to honor and recognize them, and even had the study "blessed" by local religious heads.

So, it was quite a surprise when only 50 percent of the participants arrived at our make-shift clinic for their final blood draw. In something of a panic, we decided that instead of waiting for them to come to us, we would take our equipment and go to their houses. If they did not want to give us a blood sample, they could tell us at their doorsteps.

Did our strategy constitute an unacceptable level of coercion? I must say I wasn't entirely comfortable with it. Here we were, doctors and professionals in the field, arriving on their doorsteps with our lab coats on and all the equipment necessary to draw blood—wouldn't this make it harder for them to say "No"? And if we did make it harder, were we then violating their right to be left alone and refuse participation (a right guaranteed them when they initially consented to participate)?

In any event, the strategy worked. We were able to obtain enough samples to make our data credible. And after talking with other, more experienced researchers about blood sampling in other countries, I found that our strategy was not uncommon at all—that collecting enough data from certain nonwestern populations can be very difficult and that you do whatever is ethically reasonable to get the job done. In fact, we did have some participants deny our requests for a final blood draw, indicating that there was still ample opportunity for participants to withdraw. I nevertheless wonder whether our strategy crossed the ethical line of respecting our participants' right to refuse.
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 Benefited; Collected Blood Samples; Collecting Data; Consent Form Read and Explained; Culture; Distrust; Endline Blood Samples; Equipment; Ethically Reasonable; Extra Medical Care; Free Medicine; Host Country; Illiterate; Impoverished Country; IRB; Lab Coats; Language; Master’s Degree; Obtain Baseline; Protocol; Recruit; Recruitment Problems; Retain Subjects; Site
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 - 16:42:28 - DebieSchilling
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