FACILITATOR’S NOTES
This case study is about the way a study recruiter relates to and interacts with potential participants, and raises the question of whether his interactions are ethical. It is a useful scenario to use to encourage discussion about the challenges fieldworkers encounter, and how these can be managed ethically. The case study prompts broader questions about benefits, inducements, coercion, and the distinction between research activities and meeting participants’ basic public health needs. In this story a government public health worker is seconded to a research project, raising issues around different work experiences and goals. This case study can, therefore, also be used to make connections to themes arising in the Institutional Relationships group of case studies.
You may not be able to cover all of this ground in your session, so in directing the discussion, it may be useful to think about who your training participants are, what questions engage them most in their work, and what changes they may be in a position to make. This does not mean that you should not touch upon all these questions, but you may want to decide on what you will focus on in most depth.
LEARNING
OBJECTIVE
To recognise that the balance between professional involvement and personal relationships is both a practical and a moral challenge for staff who interact directly with researchparticipants, and to consider various possible views of the role of medical research in communities
KEYWORDS
Informed consent Inducements Government PovertyRESEARCHER-PARTICIPANT RELATIONSHIPS HANDOUT Soap and persuasion
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SOAP AND PERSUASION:
RECRUITING AND CARING FOR PARTICIPANTS
MAMA JANE WATCHED AS THE RESEARCHERS REMOVED ALL HER THINGS
THE STORY
research study looking at the cost-effectiveness of indoor residual house spraying (IRS) is taking place in Malawi. The study is being carried out by a Danish university in collaboration with a Malawian research institute. The study involves spraying 1,000 houses over a few days, every six months. The researchers have asked local government public health officials for assistance with this, so four public health officials are seconded to the study on a temporary basis to help with the spraying, and with obtaining consent from the household heads.
David, one of these public health officials, has a huge amount of experience in community public health work. He is highly respected, and known locally as ‘Pastor-Doctor’ because he also preaches in one of the nearby Pentecostal churches. He is close to retirement age; several of the local researchers on the study received their first training in public health work from him, before getting jobs in more lucrative international research.
Soon it is time for the third and final round of spraying, and the study is going well. Relations with the community are good and consent rates are high, particularly among the homes
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visited by the public health officials, who are seen as ‘community experts’ by the researchers. For this last round, David is unable to visit one of the houses he has visited before so a local female researcher, Bilah, goes instead.
There have never been any reported problems with spraying this home, which belongs to an elderly widow known as Mama Jane. However, this time Bilah reports back that Mama Jane has refused to give her consent for her house to be sprayed. ‘She doesn’t like the research,’ she tells the study coordinator. ‘She doesn’t want me moving her things outside the house where people can see them. And she says she wants the soap that the Pastor-Doctor always brings before he sprays her house.
David is called in for a meeting. The study coordinator accuses him of ‘bribing’ Mama Jane to take part, saying that his actions have invalidated the informed consent process. David is really angry. ‘How can I “bribe” my grandmother?’ he retorts. ‘This widow has no one to take care of her. Did you not see the way her house was? How her things were so dirty? If I don’t give her soap, who will?’ The study coordinator tells David that, as a researcher, this isn’t his concern. His role in this case should only be to obtain informed consent before spraying, which means that Mama Jane has to understand the research and freely agree. ‘Ha!’ replies David. ‘What does that mean? She believes that malaria is caused by the rain. Are you telling me that because of this we should let her house go unsprayed, and let her become sick? IRS is not only about research. It’s about public health!’
The study coordinator and David reach an impasse. David threatens to pull out of the study. The study coordinator is concerned about the effect this will have on community relations. He is also concerned about just how much soap has been circulating in the study area.
QUESTIONS
What do you think are the key issues in this story?
What do you think about researchers asking public health professionals to undertake recruitment for them? What are the consequences of this for recruitment practice? What do you think David means when he says ‘How can I “bribe” my grandmother?’ What other ‘kinship’ relationships seem to be at play among David, the researchers, the coordinator, and the community?
What could be the consequences for the project if David leaves the study?
Do you think that participants in this study should receive some form of reimbursement? If no, why not, and if yes, what should this be?
What do you think about David’s commentary on the public health aspect of the IRS? Do you agree? What challenges – and benefits – does this idea pose for researchers?
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FURTHER READING
Chantler, T., Otewa, F. et al. (2013) Ethical challenges that arise at the community interface of health research: village reporters’ experiences in Western Kenya. Developing World Bioethics 13(1), 30–37.
Geissler, P.W., Kelly, A., Imoukhuede B., Pool, R. (2008) ‘He is now like a brother, I can even give him some blood’ – relational ethics and material exchanges in a malaria vaccine ‘trial
RESEARCHER-PARTICIPANT RELATIONSHIPS FACILITATOR’S NOTES Gel and/or