AO: These fictional case studies are based on experiences from studies of transnational medical research in Africa. They use this genre “in order to reach as wide of an audience as possible.”
AO: Analysts note continued reference to “overseas research” with rhetoric that continue to express hierarchical center-periphery geographies (implying secluded islands of civilization in the wilderness).
AO: The analysts note that discussion around bioethics in research has led to renewed emphasis on capacity building, and obliged Northern initiatives to invest further in involving African people in research, sometimes as a funding requirement. They note that at the end of colonialism such efforts were labelled ‘Africanization’. “The persistence of the term in discussions of research provides yet another point of continuity between the past, present, and suggested future of medical research in Africa.” (239)
AO: Analysts do not provide a “right answer” at the end of their fictitious stories, highlighting their assumption that there is not one right way to tackle the ethics involved. Nonetheless, they have “learning objectives” identified in the index of case studies at the back of the book. For example, the data trouble chapter notes: “To explore access to, use, and ownership of participants’ health data in collaborative medical research, and through this to reflect on collaboration between unequal partners.”
AO: The analysts hold that collaborative relationships will also (always?) necessarily involve ethical challenges (in the context of research).
AO: Analysts believe that successful collaboration (which has strong dialogue and deliberation) creates a wide range of relations that now only allow for science but also growth of personal relations which then produce even “better science” (235). Analysts argue for this process of “long-term engagement across difference.”
AO: The analysts are interested in the relational ethics of medical research in Africa. They are particularly worried about ethics in these contexts because the global health research invariably involves major economic and political inequalities. They argued that global inequalities should worry transnational medical researchers persistently since the first step in any attempt to address system-level inequalities must be to engage one’s ‘conscience’, “taking note of larger and smaller stumbling-blocks and the personal challenge which these pose to each of us.” (232)
AO: The analysts note that public medical research is under threat from particular economic and political interests. They also note public-private partnerships that emphasize technical fixes and use private funding and expertise (235). Therefore analysts note the importance to maintain the analytic distinction between public and private science. This analytic difference is particularly relevant for my project because there is little locally publicly funded research on technology in the same way there is for health. Nonetheless I think it is imporant to still maintain and keep the distinction – perhaps to eventually make the case that there should be publicly funded research!
AO: The analysts note that research ethics cannot be separated from the economic context of global research (“Material realities dictate ethical possibilities, and ethics are political. Ethical challenges in transnational research arise not only in relation to vulnerable participants, but also from collaborative and institutional engagements.”)
AO: institutional IRB ethical frameworks are identified as shaping the relational ethics (although not dictating them). Improved regulation but also more overly simple solutions and emphasizing participants’ individual, discrete choices, without exploring the wider context and also fostering culture of superficial compliance (238)
AO: Legacy of colonialism is mentioned and “imperial science” (234)
AO: The analysts note that public medical research is under threat from particular economic and political interests. They also note public-private partnerships that emphasize technical fixes and use private funding and expertise (235). Therefore analysts note the importance to maintain the analytic distinction between public and private science. This analytic difference is particularly relevant for my project because there is little locally publicly funded research on technology in the same way there is for health. Nonetheless I think it is imporant to still maintain and keep the distinction – perhaps to eventually make the case that there should be publicly funded research!
AO: the analysts argued for three levels of debate and action: individual, institutional and structural (page 15). They argue that ethical challenges arise from collaborative engagements.
AO: Data case study: the research relationship started informally and was established in a spirit of networking. Both parties perceived that they benefited from this relationship: the doctor’s workplace was improved and could serve more patients, and the scientist accessed valuable data to further his research. However, over time, doctor senses that collaboration is not equal the scientist assumes primary ownership of the data and fails to actively involve him in the dissemination of findings and plans for new studies. The fact that communication between both parties is very limited contributes to the deterioration of the relationship.
AO: transnational medical research work between those in the global South and North.
AO: The analysts call for more deliberation as a process where everyone concerned by the decision is considered a valid moral agent, obligated to give
AO: They note that good collaborators should develop an ability to express and confront overarching conditions and contradictions, to negotiate agreements about direction and purpose, to seek allies and identify obstacles, and to be open to disagreement and failure. They note that such deliberation “has no easy solutions but encompasses multiple perspectives” (232).
They write: “The goal of this process is not the reaching of a consensus but the enrichment of one’s own point of view with that of the others, increasing in this way the maturity of one’s own decision, in order to make it wiser or prudent. The people involved in deliberating the case may have different opinions as to how the issues should be resolved, but debating the issues will help change their perceptions of the problem. This is the benefit of the deliberation process.”
AO: The technology is less of the focus within the stories although they talk about bringing in of equipment, riding around in land rovers, etc.
AO: in this case study, the analysts are concerned with the ethics of data sharing, and the development of policies and guidelines to support practice.