Data Sovereignty

'Protecting Policy Space for Indigenous Data Sovereignty Under International Digital Trade Law' by Andrew D. Mitchell and Theo Samlidis comments 

The impact of economic agreements on Indigenous peoples’ broader rights and interests has been subject to ongoing scrutiny. Technological developments and an increasing emphasis on Indigenous sovereignty within the digital domain have given rise to a global Indigenous data sovereignty movement, surfacing concerns about how international economic law impacts Indigenous peoples’ sovereignty over their data. This Article examines the policy space certain governments have reserved under international economic agreements to introduce measures for protecting Indigenous data or digital sovereignty (IDS). We argue that treaty countries have secured, under recent international digital trade chapters and agreements, the benefits of a comprehensive economic treaty and sufficient regulatory autonomy to protect Indigenous data sovereignty. 

Trade

'Cross-border data flows and privacy in global trade law: has trade trumped data protection?' by Mira Burri in (2023) 39(1) Oxford Review of Economic Policy 85–97 comments 

This article is set against the complex backdrop of the evolution of the data-driven economy and its regulation, and seeks to provide a better contextualization of the topic of data protection as a matter of trade law. It looks at the recent proliferation of rules on data flows, specifically addressed in free trade agreements (FTAs), at how data protection has been framed in these treaties, as well as at the available reconciliation mechanisms developed to interface trade and privacy. The article explores the most advanced models that have been developed in this regard so far, with a focus on some US-led and EU-led treaties. These analyses build the basis for testing the conjecture as to whether trade law has gone too fast and too deep, encroaching on domestic privacy law developments that unfold at a much slower pace.

Burri states 

Legal adaptation in the face of technological advances, including in the area of trade law, is not necessarily a new topic. This is true also for digital technologies as, on the one hand, the World Trade Organization (WTO) membership realized fairly early on with the 1998 Work Programme on Electronic Commerce that all areas of trade are deeply affected by the Internet and changes in the existing rules for trade in goods, trade in services, as well as those for the protection of intellectual property (IP) rights, may be needed. On the other hand, this acknowledgment has been accompanied by a host of studies that explored where such changes are most urgent and what they might look like, as well as considering their political feasibility. Yet, it is fair to note that this dual mobilization of policy and scholarship was based on a wave of technological changes that were still, so to speak, at level 2.0, where the Internet was seen as a mere platform enabling the online sale of services and goods, often framed under ‘e-commerce’, but failed to recognize the disruptive potential of the Internet as a general purpose technology (GPT) with far-reaching spillover effects. With the changing conditions of trade and the emergence of global value chains (GVCs), intensified convergence, and servicification, these effects did become palpable and were considered by a series of later studies. Yet, the centrality of data remained largely ignored, as their embeddedness in the economy and their profound societal effects were at an early stage. It is only recently, with the advent of the so-called ‘Fourth Industrial Revolution’, that the impact of data across all sectors of the economy and the disruptive character of digitization were fully acknowledged. And it is only in very recent times, with the shaping of Big Data and artificial intelligence (AI) as distinct new phenomena, that both policy and academic circles, not exclusively in the area of trade, recognized the need for a change in legal design that goes beyond plain adjustments. 

These later stages exposed also in a new way the link between digital trade, or data-enabled/driven trade, and privacy protection, and their regulation became intensely contested. Previously privacy and trade law were rarely connected and nor has their interface been addressed in the legal frameworks. While there has been a robust scholarly and policy debate on the impact of the ‘hard’ rules of international economic law on non-economic interests, privacy has seldom been one of the major concerns. The new field of contestation was defined by the increased value of data and the affordances of Big Data and Big Data analytics. In this context, there is now broad agreement that data are so essential to economic processes that they are commonly said to be the ‘new oil’. Many studies have revealed the vast potential of data, and the dependence of new and emerging technologies, like AI, on data. 

Yet, this increased dependence on data brought about a new set of concerns. The impact of data collection, use, and re-use upon privacy was particularly recognized by scholars and policy-makers. These challenges triggered a new preoccupation for law-makers and led to reform of data protection laws around the world, best exemplified by the EU General Data Protection Regulation (GDPR). The reform initiatives are, however, not coherent and are culturally and socially embedded, reflecting societies’ understandings of constitutional values, relationships between citizens and the state, and the role of the market, as illustrated later on by a reference to the US and EU’s approaches to data protection. 

The tensions around data have also revived older questions about sovereignty and international cooperation in cyberspace. Data’s intangibility and pervasiveness pose particular difficulties for determining where data are located, as bits of data, even those associated with a single transaction or online activity, can be located anywhere. With the increased value of data and the associated risks and because of the contentious jurisdictional issues, governments have proactively sought new ways to assert control over them—in particular by prescribing diverse measures that ‘localize’ the data, their storage or suppliers, so as to keep them within the state’s sovereign space. Erecting barriers to data flows has, however, serious implications for trade and brings about a tension between data protectionism and data sovereignty and the inherent to trade agreements striving to liberalize trade, foster growth, and innovation. 

Overall, with the amplified role of data in societies, the interfaces between trade and privacy protection have become multiple and intensified. They raise important questions as to adequate regulatory design that can reconcile economic and non-economic concerns, national and international interests. This article is set against this complex backdrop and seeks to provide a better understanding and contextualization of the topic of data protection as a matter of trade law. It looks at the recent proliferation of rules on data flows, specifically addressed in free trade agreements (FTAs), at how data protection has been framed in these treaties as well as at the available reconciliation (or escape) mechanisms developed to interface trade and privacy. The article explores the most advanced models that have been developed in this regard so far, with a focus on some US-led and EU-led treaties. These analyses build the basis for testing the conjecture as to whether trade law has gone too fast and too deep encroaching on domestic privacy law developments that unfold at a much slower pace.

Genome

'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.

Indigenous Data Sovereignty

'Indigenous Data Sovereignty in the era of Big Data and Open Data' by Maggie Walter, Raymond Lovett, Bobby Maher, Bhiamie Williamson, Jacob Prehn, Gawaian Bodkin‐Andrews and Vanessa Lee in (2020) Australian Journal of Social Issues comments 

Indigenous Data Sovereignty, in its proclamation of the right of Indigenous peoples to govern the collection, ownership, and application of data, recognises data as a cultural and economic asset. The impact of data are magnified by the emergence of Big Data and the associated impetus to open publicly held data (Open Data). Aboriginal and Torres Strait Islander peoples, families and communities, heavily overrepresented in social disadvantage related data will also be overrepresented in the application of these new technologies. But, in a data landscape Indigenous peoples remain largely alienated from the use of data and its utilization within the channels of policy power. Existing data infrastructure, and the emerging Open Data infrastructure, neither recognise Indigenous agency, worldviews nor consider Indigenous data needs. This is demonstrated in the absence of any consideration of Indigenous data issues Open Data discussions and publication. So, while the potential benefits of this data revolution are trumpeted, our marginalised social, cultural and political location suggest we will not share equally in these benefits. This paper discusses the unforeseen (and likely unseen) consequences of the influence Open data and Big Data and discusses how Indigenous Data Sovereignty can mediate risks while providing pathways to collective benefits.