From Promise to Practice: How Organizational and Knowledge Practices Shape Possibilities for Benefit in Global Genomics

• In Event: Organizations, Science, and Expertise

Abstract

New initiatives in global genomics research escalate the urgency of questions regarding how to organize research that benefits all populations. Addressing these challenges requires identifying and unpacking organizational policies, institutional practices, and other meso-level mechanisms that shape the conduct and consequences of genomics research. In this paper, we draw from an ongoing qualitative study of global genomics initiatives that includes document review and legal analysis, observations, and 23 semi-structured, in-depth interviews with investigators, community representatives and advisors, ethics advisors, and institutional research office staff. Interviewees were recruited based on their involvement in global genomics initiatives that seek to enact novel approaches to benefit sharing, data governance, and research partnerships. Findings focus on how organizations shape possibilities for mutual benefit in genomics partnerships that center underrepresented communities. First, we surface dominant and alternative frameworks for understanding institutions’, researchers’ and communities’ relationships to data, and the organizational mechanisms through which these relationships are recognized. Next, we argue that multiple material, technological, and institutional infrastructures, along with various forms of expertise, must be available and work synergistically to translate data access into situated forms of “value.” These findings identify organizational infrastructures and knowledge practices around data access and governance that facilitate, or impede, the possibilities for mutually beneficial research partnerships. Finally, we contend that, for genomics research initiatives to produce mutual benefit, requires deep commitments and time to build and maintain relationships with local researchers and communities, as well as to build capacity and ensure sustainability. These imperatives underscore the fundamental changes required throughout the larger research ecosystem, to account for how institutionalized trustworthiness is situated, relational, and cultivated iteratively, and must be embedded in organizational and knowledge production practices, procedures, and policies.

Authors

• Julia Taub Gordon, University of California-San Francisco

• Janet K. Shim, University of California-San Francisco

• Caitlin McMahon, Columbia University

• Shawneequa Callier, The George Washington University School of Medicine and Health Sciences

• Sandra Soo-Jin Lee, Columbia University