Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

Pathways and obstacles to social recovery following the elimination of SARS-CoV-2 from Aotearoa New Zealand: a qualitative cross-sectional study.

BACKGROUND: Many public health experts have claimed that elimination strategies of pandemic response allow 'normal social life' to resume. Recognizing that social connections and feelings of normality are important for public health, this study examines whether, and for whom, that goal is realized, and identifies obstacles that may inhibit its achievement. METHODS: Thematic analysis of narratives obtained via a qualitative cross-sectional survey of a community cohort in Aotearoa | New Zealand. RESULTS: A majority of participants reported that life after elimination was 'more or less the same' as before the pandemic. Some became more social. Nevertheless, a sizeable minority reported being less social, even many months after elimination. Key obstacles to social recovery included fears that the virus was circulating undetected and the enduring impact of lockdowns upon social relationships, personal habits and mental health. Within our sample, old age and underlying health conditions were both associated with a propensity to become less social. CONCLUSIONS: Elimination strategies can successfully allow 'normal social life' to resume. However, this outcome is not guaranteed. People may encounter difficulties with re-establishing social connections in Zero-COVID settings. Measures designed to overcome such obstacles should be an integral part of elimination strategies.

Indigenous Peoples and research: self-determination in research governance.

Indigenous Peoples are reimagining their relationship with research and researchers through greater self-determination and involvement in research governance. The emerging discourse around Indigenous Data Sovereignty has provoked discussions about decolonizing data practices and highlighted the importance of Indigenous Data Governance to support Indigenous decision-making and control of data. Given that much data are generated from research, Indigenous research governance and Indigenous Data Governance overlap. In this paper, we broaden the concept of Indigenous Data Sovereignty by using the CARE Principles for Indigenous Data Governance to discuss how research legislation and policy adopted by Indigenous Peoples in the US set expectations around recognizing sovereign relationships, acknowledging rights and interests in data, and enabling Indigenous Peoples' participation in research governance.

Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty.

Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous communities and across diverse fields, including Network Sovereignty, Food Sovereignty, Energy Sovereignty, and Data Sovereignty. Indigenous Research Sovereignty draws in the sovereignty discourse of these initiatives to consider their applications to the broader research ecosystem. Our exploration of Indigenous Research Sovereignty, or Indigenous self-determination in the context of research activities, has been focused on the relationship between Indigenous Data Sovereignty and efforts to describe Indigenous Peoples' Rights in data.

Extending the CARE Principles from tribal research policies to benefit sharing in genomic research.

Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government's research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.

Community healthcare workers' experiences during and after COVID-19 lockdown: A qualitative study from Aotearoa New Zealand.

Shortly after the COVID-19 pandemic reached Aotearoa New Zealand, stringent lockdown measures lasting 7 weeks were introduced to manage community spread of the virus. This paper reports the findings of a qualitative study examining how lockdown measures impacted upon the lives of nurses, midwives and personal care assistants caring for community-based patients during this time. The study involved nationwide surveys and in-depth interviews with 15 registered nurses employed in community settings, two community midwives and five personal care assistants. During the lockdown, nurses, midwives and personal care assistants working in the community showed considerable courage in answering their 'call to duty' by taking on heightened care responsibilities and going 'the extra mile' to help others. They faced significant risks to personal and professional relationships when they were required to take on additional and complex responsibilities for community-based patients. Despite the hypervigilant monitoring of their personal protective equipment (PPE), the need to safeguard family and community members generated considerable stress and anxiety. Many also faced personal isolation and loneliness as a result of lockdown restrictions. Moreover, the negative impacts of experiences during lockdown often continued to be felt once restrictions had been lifted, inflecting life during periods in which community transmission of COVID-19 was not occurring. This article makes five core service delivery and policy recommendations for supporting community-based nurses, midwives and personal care assistants in respiratory disease pandemics: acknowledging the crucial role played by community-based carers and the associated stress and anxiety they endured by championing respect and compassion; demystifying the 'heroism' or 'self-sacrifice' projected onto care workers; the timely provision of adequate protective equipment; improving remuneration, with adequate provision for time off; and regular counselling, peer support groups and education on work-life balance delivered by support workers in recognition of stressors arising from these complex and isolated working conditions.