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- Convenors:
-
James Doucet-Battle
(University of California, Santa Cruz)
Jenny Reardon (UC Santa Cruz)
Yasmine Aguib (Magdi Yacoub Heart Foundation)
Ruth Müller (Technical University of Munich)
Clarissa Prazeres da Costa (Technical University of Munich)
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- Discussant:
-
Rebekah Ciribassi
(University of Oslo)
- Format:
- Roundtable
Short Abstract:
This roundtable introduces a first of its kind interdisciplinary study of the challenges of creating biomedical knowledge that incorporates epigenomic and genomic data in ways that equitably serves the needs and fosters the well-being of people of diverse ethnic and economic backgrounds in Africa.
Long Abstract:
In recent years, leaders in medicine and society have begun to recognize that the historic lack of representation of the diverse societies and communities on the African continent poses a tremendous challenge to the goal of achieving equitable and just genomic medicine (Bustamante et al., 2011; Popejoy & Fullerton, 2016; Bustamante, Wonkam et al., 2021). In response, scientists, biotechnology companies, and political leaders today are mobilizing to collect and study genomes in Africa, and to create centers of excellence in genomic medicine. However, to date very little attention has been paid to understanding the societal and ethical issues and related challenges of creating equitable access to health care that attend these efforts. This roundtable introduces a first of its kind interdisciplinary study of the challenges of creating biomedical knowledge that incorporates epigenomic and genomic data in a manner that equitably serves the needs and fosters the well-being of people of diverse ethnic and economic backgrounds in Africa. In our respective papers, we argue collectively that if genomics promises to revolutionize health systems, it must happen in a manner that does not reproduce colonial and racist structures and inequities. We submit that not only does genomics need to represent the genomic data of all people, it needs to do so in ways that reflect and support the values and priorities of diverse societies and communities. Of broader significance, our project will ensure that learning is truly global, in further building the knowledge base needed to create research aimed at achieving equitable health outcomes in Africa, Europe and the U.S.
Accepted contribution:
Session 1Rebekah Ciribassi (University of Oslo)
Short abstract:
This paper draws on ethnographic research around sickle cell disease in Tanzania to highlight the ways that categories of “global” and “local” are remade through the new prioritization of Pan-African genomic medicine. It argues for attention to the ethics of scale in contemporary genetic research.
Long abstract:
This paper reflects roughly a decade of ethnographic engagement with the growing infrastructure for sickle cell disease research and care in Tanzania. As part of the expanding Pan-African research collaborations around genetic medicine in Africa since the early 2010s, Tanzania has emerged as a hub for knowledge production around sickle cell both by and for Africans. Across the country, Tanzanian medical researchers continually break earlier, more extractive patterns of Global Health by creating sickle cell disease collaborations that strive to center local expertise and local needs. In this paper, however, I suggest that “local” is an unstable and incomplete signifier. Indeed, the various (especially financial) pressures of Global Health continue to privilege claims to extractable, abstract, and universal knowledge that can serve the greatest number of people. Meanwhile, new collaborations must move through existing political and social alliances that predate the present moment, figuring "the local" in particular ways. This can often risk rendering other, more hyperlocal needs and forms of expertise less visible. How might efforts toward globally inclusive learning and global health outcomes resist the familiar tropes of postcolonial Global Health, and instead privilege the expertise of diverse local experiences? How are these categories of “global” and “local” themselves (re)made in different ways through growing sickle cell disease infrastructure? Rather than proposing any single answer to these questions, this paper uses ethnographic stories of Tanzanian biomedicine, activism, and community care to invite different perspectives and forms of labor into the work of expanding genetic disease infrastructure.