'We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision Medicine' by Krystal S. Tsosie, Joseph M. Yracheta, Jessica A. Kolopenuk and Janis Geary in (2021) 21(4) American Journal of Bioethics 72-75 comments
In “Obligations of the ‘Gift’: Reciprocity and Responsibility in Precision Medicine,” Lee (2021) rightly points out that disparities in health care access also lead to disparities in precision medicine research participation. Lee (2021) adds that an emphasis on individual consent among research ethics fails to adequately address Indigenous expectations for the governance of research specimens. As Lee summarizes in their conclusion, it is important to account for the ways that “group history and structural inequities” (64) continue to shape 21st century advances in medicine. While Lee frames their discussion within the context of clinical practice and the US healthcare system, our commentary extends consideration of the conditions that impact Indigenous participation in precision medicine research and also the potential benefits derived from it. We argue that Lee’s paper (not unlike much of the field of precision medicine) takes for granted the colonial power relations that shape the aforementioned structural inequities as the basis of Indigenous peoples’ relationship to health care systems. We contend that such erasure of the ongoing resistance of Indigenous peoples to protect and exercise their sovereignty, self-determination, and governance leads to the problematic framing of Indigenous participation in research as being a matter of “gifting” and “reciprocity.” Alternatively, and from our perspectives as Indigenous (in genetics—KST and JMY, science and technology—JK) and community-engaged (public health—JG) researchers, we offer the concept of “DNA on Loan” (Arbour and Cook 2006) to open pathways toward Indigenous genomic and data sovereignty in precision medicine.
Contemporary biomedical research with and affecting Indigenous peoples must consider the histories and present experiences of research exploitation and harm perpetuated by medical institutions and researchers. Research has too often been done to and about Indigenous peoples, rather than for, with, or by Indigenous peoples (Dalton 2002). The fundamentally colonial and inequitable relationship between Indigenous peoples and the predominantly non-Indigenous research institutions that control access to healthcare and funding is a crucial context for reframing the so-called exchanges of gifts in precision medicine. Current policy structures that fund Indigenous health research do not ensure that funding goes directly to Indigenous communities, nor do policies ensure that those conducting research on behalf of communities follow procedures to prevent their exploitation. Therefore, the idea of “gift” implies a requisite trust by the gifter toward the receiving research institution. However, when “consultation” attempts from funders with Tribal leaders inevitably raise the issue of Indigenous data sovereignty or Tribal control of samples, funders quickly dismiss that as not commensurate with conventional research practices. This lack of trust in the Tribal partners’ ability to grant fair and consistent access is readily apparent not only in funding partnerships but with editors of major journals who recommend removing such phrases as “Tribal control & authority.” Such ability to dismiss the very real concept of tribal control demonstrates the extreme power imbalance of “gifting.” The structural power imbalance left in the wake of this policy gap is also apparent when Indigenous peoples are offered participation in research initiatives after the terms of participation have been predetermined by research institutions or funding authorities. Indigenous communities and scholars must then choose to accept the imposed terms or risk losing out on research opportunities entirely