Historial de revisiones
Revisión 1.0-1 Wed Nov 10 2010 Steven Levine Lanzamiento inicial de Red Hat Enterprise Linux 6
FACILITATOR’S NOTES
This story focuses on how medical research organizations may work to improve life and health in the future, but on the path towards realising this, they may not be contributing very much to people’s lives and health in the here and now. This story asks you to put yourselves in the shoes of a research participant and consider her viewpoint. Even though participants in research projects may benefit from better care than in the public health system, this is only temporary and can create its own problems. Research organizations may be seen as both contributing to the public good, and at the same time building their privileged position on the very inequalities that they claim to alleviate. This case study aims to open up discussion on both the ethical and practical aspects of this paradox.
LEARNING
OBJECTIVE
To recognise how and why participants may feel conflicted about the value of foreign-funded medical research, and that these differing views can co-exist and create dilemmas.KEYWORDS
Inducements Standards of care Poverty North-South relationships Long-term engagementRESEARCHER-PARTICIPANT RELATIONSHIPS HANDOUT Martha’s dilemma
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MARTHA’S DILEMMA:
FOREIGN MEDICAL RESEARCH AS PUBLIC GOOD
OR EXPLOITATION?
A RESEARCH CLASS SYSTEM
THE STORY
artha is a well-educated woman in her early thirties. Some years back she had a formal job, but lost it because her company went bankrupt. Since then she has tried to run a small business as well as volunteering at a public health clinic, where she is much appreciated because of her skills and enthusiasm.
When pregnant with her third child, Martha gets involved with an internationally funded medical research project, which focuses on preventing mother-to-child HIV transmission via breastfeeding. This is not an easy decision for her. She thinks to herself: ‘I don’t like these researchers. Why are they testing us? Why aren’t they doing it in their country? Is it because we are poor, or what?’ She finds it hard to trust the motivations of the researchers.
At the same time, she understands that she will get first-rate care and advice regarding her child and her own health as long as she is involved with the project, which she would
RESEARCHER-PARTICIPANT RELATIONSHIPS HANDOUT Martha’s dilemma
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otherwise not be able to afford. She joins the research, and appreciates the knowledge she gains and the care that she and her infant receive.
After the project ends, Martha receives ongoing care at a public health clinic. Although she is always treated with respect at this free clinic, there are obvious differences between the resources available here and at the research project. She is quite upset about this difference. ‘How can the researchers just come here and use us just because we are poor?’ she thinks. ‘It’s an insult how their Principal Investigators get promotions because of us. They should not get an advantage out of our poverty. They are even contributing to it by giving us a little something in transport reimbursement, just to keep us quiet. They probably say behind our backs, “Africans are weak, just give them a bit of money and they’ll do whatever you want.” I don’t know how the government permits them to come and do this work!’
Martha is unsure about whether to join the next research project when it opens for recruitment. She knows that certain research projects have to be carried out in Africa, because the particular conditions that the research aims to tackle are comparatively rare in Europe and the United States. Still, she finds it very odd that foreign-funded research organizations operate as almost independent entities in the overall healthcare system. She also feels that, although the medicines and treatments on trial are meant to benefit people like herself in the future, rich research organizations recruiting poor local people should do something further to improve their situation right away.
QUESTIONS
Can you summarize Martha’s ideas about foreign-funded medical research? What are the questions that are most important to her?
What ideals do Martha’s concerns express? Are these reasonable?
Try listing the factors that would make Martha feel better about participating in the research. If Martha could see into the future, what would she hope to see coming out of the project?
How about you? How much do you think research organizations should worry about improving people’s lives and health here and now, as they carry out their exploration of how to improve the future?
What about the past? What role do you think it plays when people are trying to understand present-day research?
What practical problems might arise for the project, if concerns like Martha’s are not addressed?
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Can you think of realistic ways in which a research project could try to draw links between present work, and the way it will be remembered in the future?
REFLECTION ON YOUR OWN EXPERIENCES
Have you come across similar conflicting views of foreign-funded medical research? If so, how has your organization responded?
ACTIVITY
Split into groups of four to six people, depending on the size of your workshop, and discuss one of Martha’s main areas of concern. Try to decide who is responsible for the problem, how it could be addressed, and how you could judge the outcome.
FURTHER READING
Crane, J.T. (2013) Scrambling for Africa: AIDS, expertise, and the rise of American global health
science. Cornell University Press, Ithaca, New York.
Kingori, P. (2015) The ‘empty choice’: A sociological examination of choosing medical research participation in resource-limited sub-Saharan Africa. Current Sociology 63(5), 763– 778.
Petryna, A. (2007) Clinical trials offshored: on private sector science and public health. BioSocieties 2(1), 21–40.
RESEARCHER-PARTICIPANT RELATIONSHIPS FACILITATOR’S NOTES Routine healthcare
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WHOSE OBLIGATION?
FACILITATOR’S NOTES
Clinical trials often provide free basic medical care for their participants. This is considered a benefit of participation, but also enables researchers to get the best possible data for their research. This story asks researchers to think about the full implications of providing ‘routine’ medical care for their participants. What are the limits of this provision? What do you do when the study can’t, or won’t, provide treatment for certain conditions, and your participants are unable to access it for themselves? Whose concern is the general health of research participants?
The story asks students to brainstorm best practice solutions to these kinds of situation. But it also invites them to think more widely and deeply about the underlying structures that create them. For example, one of the nurses in this story suggests that a participant is vulnerable, and thus unable to give reasonably informed consent, due to his poverty as well as his condition. Yet if this were true, who would be eligible to participate? Some critics do, in fact, argue that medical research is not ethical when it provides facilities that the national healthcare system does not. What does your group think about this? In your discussion, you may want to ensure that you both touch on this wider debate, and also consider the elements of this specific case which make it difficult for the doctor in the story. Stigma and personal relationships also play a role. What similar experiences have your students had with research participants? How do their organizations support them through these dilemmas, or what solutions have they found?
LEARNING
OBJECTIVE
To discuss best practice when providing routine medical care for trial participants, and to consider the limits of ‘informed’ consent
KEYWORDS
Research versus care Poverty Standards of care Clinical responsibilityRESEARCHER-PARTICIPANT RELATIONSHIPS HANDOUT Routine
healthcare
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