RCR Casebook: Collaboration
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Jerry is an infectious disease researcher. He has made a career studying communicable diseases. Lately, the only studies that have been funded focus on understanding transmission of HIV between gay and straight populations, especially among women. His next step is to conduct a survey with men who are HIV positive and sexually active with partners of both sexes. The survey will explore high-risk sexual behaviors, circumcision rates, the HIV status, gender, number of their partners, and the kinds of information they share with partners about their HIV status.
He understands that it is essential to develop a partnership with gay community leaders. However, he is met with suspicion and little sympathy for the kind of sensitive survey research he proposes, which some fear could create legal risks for some participants, who might be accused (rightly or wrongly) of knowingly exposing others to HIV.
He holds a few meetings with them, but the meetings are poorly attended and some statements are made about how they feel he is using them for his career advancement. Jerry feels obliged to engage these community members given funding agency expectations, but increasingly he finds this task frustrating, unpleasant, and unfruitful.
After obtaining some lukewarm letters of support from community leaders, Jerry obtains funding for his survey project. Although he has a slow rate of enrollment in his study, with the aid of modest payments for participation, after two years he completes his survey with the desired number of respondents.
"NIH encourages applicants to describe their research in terms that are easily understood by peer reviewers, scientists, Congress, and the public.
“Titles, abstracts and statements of public health relevance should:
1. Convey the value of the research in plain language – clear, succinct, and professional
2. Be comprehensible to both scientists and the public
3. Relay the potential impact of the research on health"
-National Institutes of Health, 2012
Jerry suggests to two community leaders that they might want to work for him to discuss and help write up the study’s findings, but is rebuffed. He completes the analysis of the data himself, writes up the research, and submits it to a leading public health journal.
As he re-reads the grant terms in preparation of writing his final report, he notices that he was also required to disseminate his findings in collaboration with his community partners. So he drafts an article for the local newspaper, which he forwards to several community leaders. Jerry’s presentation of his findings causes outrage within the local gay community. They feel his study has done nothing to advance public health; it only reinforces stigma and harmful stereotypes. Some of them hold a press conference, which is video-taped and sent to Jerry’s university president and to the funding agency. Jerry is taken by surprise, sure that he had carried out the terms of the grant and done everything by the book.
What should Jerry do?
Discussion Questions for the Facilitator
- What are Jerry’s responsibilities to the participating community?
- How should Jerry balance an interest in understanding risky behaviors with an interest in avoiding the stigmatization of the gay community?
- What, if anything, would you do differently in designing and implementing such a study?
- Do you think Jerry is mindful of the historical and cultural context in which he is attempting to launch his research project?
- Does Jerry’s approach truly meet the intent of the funder?
- Do funding agencies share some responsibility for ensuring the quality of community engagement?