'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.
'Is there a New Duty to Warn Family Members in English Medical Law? ABC v St George’s Healthcare NHS Trust and Others [2020] EWHC 4551' by Charles Foster and Roy Gilbar in (2021) 29(2) Medical Law Review 359–372 states
This is a commentary on the third legal chapter in the unfortunate story of ABC (‘the claimant’), a single mother who sued her father’s doctor for his failure to warn her—during her pregnancy—of the risk that she might have, or be a carrier of, an untreatable and invariably fatal genetic disease. When, after the birth of her child, she discovered that she did have the disease, she said that the clinicians’ failure had deprived her of the opportunity (which she said she would have taken) to terminate the pregnancy. She claimed damages for the continuation of her pregnancy, for psychiatric damage, and for consequential losses.
A brief reminder of the previous two chapters. In the first, the claimant contended that her father’s doctor owed her a duty of care—which meant a duty to inform her of the father’s diagnosis. In the second chapter the High Court struck out the claim, saying that there was no duty. The Court of Appeal disagreed, holding that in principle, doctors—at least in the field of clinical genetics—could owe a duty to a patient’s relatives.
The third chapter was the trial of the claim before Yip J, who held that the father’s doctor owed the claimant a duty to balance her interest in being informed of her genetic risk against the father’s interest in keeping his diagnosis confidential. It was held that there was no breach of this duty, and that in any event the claimant had failed to prove causation.
To our knowledge this decision has not been appealed. Though it is only a first instance decision, it raises four widely repercussive questions. First: does the decision create a new duty of care, or merely represent an incremental, non-seismic extension of an existing duty? Second: Should the question of whether there is a breach of duty in such circumstances be determined by reference to the Bolam test? Third: What type and degree of harm justifies the breach of a patient’s confidentiality? In particular, is a compromise of a patient’s reproductive autonomy sufficient ‘harm’ for these purposes? And fourth: how, generally, should the law of tort view patients’ relatives?
We argue here that the court has created a new legal duty by imposing on clinicians an obligation to consider the relatives’ personal interests (eg the interest in making informed decisions), to weigh those interests against the interests of those who are unambiguously patients, and, where appropriate, to act in accordance with the interests of the relative or relatives. Some of the legal difficulties in this case could have been resolved more easily if the court had acknowledged that truncation of choice (including truncated reproductive autonomy) can/should be an actionable head of damages - creating a new head of damage if necessary. We question the court’s use of the the Bolam test in deciding the question of breach, suggesting that in cases properly viewed as concerned primarily with violations of autonomy the reasonable patient test endorsed in Montgomery is likely to produce a more just result. Finally, we note that the court articulates (haltingly but definitely) a relational view of the human person (or at least those human persons who happen to be the relatives of patients), moving away from the individualistic, atomistic approach adopted for many years. The old approach was that patients were contextless islands, owing nothing to anyone. It is not clear what the new approach is—but it is clearly not quite as simple as the old.
