Navigating University Openness in Research Policy Inconsistent with Indigenous Data Sovereignty: A Case Analysis.

Indigenous nations and communities in the United States have rights as sovereign governments to exercise control and ownership over all data and information generated by or from the tribes, tribal members, or tribal resources. Indigenous nations exercise these rights through data ownership policies established in response to unethical research practices in research involving Indigenous communities. Most universities in the U.S. have "openness in research" policies to ensure academic freedom to publish freely, exercised by retaining university control of data. Here, we describe our study of cultural ecosystem services in the St. Louis River estuary region (Nagaajiwanaang in the language Ojibwemowin) in Duluth, Minnesota, and Superior, Wisconsin, U.S., an area that includes portions of the 1854 and 1842 Ceded Territories and reservation lands of a local band of Ojibwe (hereafter referred to as "the Band"). In this university-led, Band-supported study, both the university and the Band sought ownership of data collected based on their respective policies, resulting in a research delay of nearly a year. We found that open research policies that do not consider Indigenous sovereignty can hamper collaboration between university researchers and tribal nations, even when there is broad agreement on research goals and objectives. University open research policies that do not explicitly address Indigenous sovereignty fall short of the open research principles they intend to support and should be revised. Formal adoption of principles for ethical research with sovereign tribal governments by universities is needed to improve coordination and trust among university and tribal researchers and members.

The impacts of the Nutrition North Canada program on the accessibility and affordability of perishable, nutritious foods among eligible communities: a scoping review.

The Nutrition North Canada (NNC) program, introduced in April 2011 is a federal strategy to improve access to perishable, nutritious foods for remote and isolated communities in northern Canada by subsidising retailers to provide price reductions at the point of purchase. As of March 2023, 123 communities are eligible for the program. To evaluate existing evidence and research on the NNC program to inform policy decisions to improve the effectiveness of NNC. A scoping review of peer-reviewed articles was conducted in ten databases along with a supplemental grey literature search of government and non-government reports published between 2011 and 2022. The search yielded 172 publications for screening, of which 42 were included in the analysis. Narrative thematic evidence synthesis yielded 104 critiques and 341 recommendations of the NNC program across eight themes. The most-identified recommendations focus on transparency, communication, and support for harvesting, hunting, and community food initiatives. This review highlights recommendations informed by the literature to address critiques of the NNC program to improve food security, increase access to perishable and non-perishable items, and support community-based food initiatives among eligible communities. The review also identifies priority areas for future policy directions such as additional support for education initiatives, communication and transparency amidst program changes, and food price regulations.

'It is human work': qualitatively exploring community roles that facilitate cultural food security for people from refugee backgrounds.

OBJECTIVES: Cultural food security is crucial for cultural health and, for people from refugee backgrounds, supports the settlement journey. Cultural communities are vital in facilitating access to cultural foods; however, it is not understood how refugee-background communities sustain cultural food security in the Australian context. This study aimed to explore key roles in refugee-background communities to understand why they were important and how they facilitate cultural food security. DESIGN: Interviews were conducted by community researchers, and data analysis was undertaken using best-practice framework for collaborative data analysis. SETTING: Greater Brisbane, Australia. PARTICIPANTS: Six interviews were conducted between August and December 2022 with people from a refugee-background community, lived in Greater Brisbane and who fulfilled a key food role in the community that facilitated access to cultural foods. RESULTS: Fostering improved cultural food security supported settlement by creating connections across geographical locations and cultures and generated a sense of belonging that supported the settlement journey. Communities utilised communication methods that prioritised the knowledge, wisdom and experience of community members. It also provided community members with influence over their foodways. Community leaders had an ethos that reflected collectivist values, where community needs were important for their own health and well-being. CONCLUSIONS: Communities are inherently structured and communicate in a way that allows collective agency over foodways. This agency promotes cultural food security and is suggestive of increased food sovereignty. Researchers and public health workers should work with communities and recognise community strengths. Food security interventions should target cultural food security and autonomy.

Personalized Deep Learning for Substance Use in Hawaii: Protocol for a Passive Sensing and Ecological Momentary Assessment Study.

BACKGROUND: Artificial intelligence (AI)-powered digital therapies that detect methamphetamine cravings via consumer devices have the potential to reduce health care disparities by providing remote and accessible care solutions to communities with limited care solutions, such as Native Hawaiian, Filipino, and Pacific Islander communities. However, Native Hawaiian, Filipino, and Pacific Islander communities are understudied with respect to digital therapeutics and AI health sensing despite using technology at the same rates as other racial groups. OBJECTIVE: In this study, we aimed to understand the feasibility of continuous remote digital monitoring and ecological momentary assessments in Native Hawaiian, Filipino, and Pacific Islander communities in Hawaii by curating a novel data set of longitudinal Fitbit (Fitbit Inc) biosignals with the corresponding craving and substance use labels. We also aimed to develop personalized AI models that predict methamphetamine craving events in real time using wearable sensor data. METHODS: We will develop personalized AI and machine learning models for methamphetamine use and craving prediction in 40 individuals from Native Hawaiian, Filipino, and Pacific Islander communities by curating a novel data set of real-time Fitbit biosensor readings and the corresponding participant annotations (ie, raw self-reported substance use data) of their methamphetamine use and cravings. In the process of collecting this data set, we will gain insights into cultural and other human factors that can challenge the proper acquisition of precise annotations. With the resulting data set, we will use self-supervised learning AI approaches, which are a new family of machine learning methods that allows a neural network to be trained without labels by being optimized to make predictions about the data. The inputs to the proposed AI models are Fitbit biosensor readings, and the outputs are predictions of methamphetamine use or craving. This paradigm is gaining increased attention in AI for health care. RESULTS: To date, more than 40 individuals have expressed interest in participating in the study, and we have successfully recruited our first 5 participants with minimal logistical challenges and proper compliance. Several logistical challenges that the research team has encountered so far and the related implications are discussed. CONCLUSIONS: We expect to develop models that significantly outperform traditional supervised methods by finetuning according to the data of a participant. Such methods will enable AI solutions that work with the limited data available from Native Hawaiian, Filipino, and Pacific Islander populations and that are inherently unbiased owing to their personalized nature. Such models can support future AI-powered digital therapeutics for substance abuse. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46493.

Systematic review of Aboriginal and Torres Strait Islander peoples' experiences and supportive care needs associated with cancer.

BACKGROUND: Persistent disparities exist between Aboriginal and Torres Strait Islander peoples (the Indigenous peoples of Australia) and non-Indigenous Australians associated with cancer, with Aboriginal and Torres Strait Islander peoples experiencing a longer time to treatment, higher morbidity rates, and higher mortality rates. This systematic review aimed to investigate findings and recommendations in the literature about the experiences and supportive care needs of Aboriginal and Torres Strait Islander peoples with cancer in Australia. METHODS: A qualitative systematic review was conducted using thematic analysis. Database searches were conducted in CINAHL, Informit, MEDLINE, ProQuest, Scopus, and Web of Science for articles published between January 2000 and December 2021. There were 91 included studies which were appraised using the Mixed Methods Appraisal Tool. The included studies reported on the experiences of cancer and supportive care needs in Aboriginal and Torres Strait Islander populations. RESULTS: Six key themes were determined: Culture, family, and community; cancer outcomes; psychological distress; access to health care; cancer education and awareness; and lack of appropriate data. Culture was seen as a potential facilitator to achieving optimal cancer care, with included studies highlighting the need for culturally safe cancer services and the routine collection of Aboriginal and Torres Strait Islander status in healthcare settings. CONCLUSION: Future work should capitalize on these findings by encouraging the integration of culture in healthcare settings to increase treatment completion and provide a positive experience for Aboriginal and Torres Strait Islander peoples with cancer.

Personal data store ecosystems in health and social care.

This paper considers how the development of personal data store ecosystems in health and social care may offer one person-centered approach to improving the ways in which individual generated and gathered data-e.g., from wearables and other personal monitoring and tracking devices-can be used for wellbeing, individual care, and research. Personal data stores aim to provide safe and secure digital spaces that enable people to self-manage, use, and share personal data with others in a way that aligns with their individual needs and preferences. A key motivation for personal data stores is to give an individual more access and meaningful control over their personal data, and greater visibility over how it is used by others. This commentary discusses meanings and motivations behind the personal data store concept-examples are provided to illustrate the opportunities such ecosystems can offer in health and social care, and associated research and implementation challenges are also examined.

The "UFO Taboo" Is What IR Theorists Make of It: "Sovereignty and the UFO" in Citational Perspective.

In 2008, Alexander Wendt and Raymond Duvall published an article titled "Sovereignty and the UFO," which demonstrated how a UFO taboo in international relations theory upheld an anthropocentric model of sovereignty. At a distance of a decade and a half, this review evaluates the validity of the claim that a UFO taboo exists in international relations, and explores the citational practices that influence the prestige economy of the field. The article employs a methodology of interpretive scientometrics informed by methodological debates in political science and international, as well as theoretical debates in actor-network theory. After testing the claim of the UFO taboo in a comparative perspective, the article investigates the strategies of association (weak and strong) present in the citations of "Sovereignty and the UFO." In addition to a revaluation of core claims in an often-read but less-often-cited article in international relations theory, this article provides important insights into how citation works in the discipline of international relations.

Indigenous food sovereignty assessment-A systematic literature review.

AIMS: The aims of this systematic review were to (1) identify assessment approaches of Indigenous food sovereignty using the core domains of community ownership, inclusion of traditional food knowledge, inclusion/promotion of cultural foods and environmental/intervention sustainability, (2) describe Indigenous research methodologies when assessing Indigenous food sovereignty. METHODS: Guided by Indigenous members of the research team, a systematic review across four databases (Medline, Embase, CINAHL and PsycINFO) was performed. Studies in any language from 1996 to 2021, that used one or more of the core domains (identified from a recent scoping review) of community ownership, inclusion of traditional food knowledge, inclusion/promotion of cultural foods and environmental/intervention sustainability were included. RESULTS: From 20 062 records, after exclusion criteria were applied, 34 studies were included. Indigenous food sovereignty assessment approaches were mostly qualitative (n = 17) or mixed methods (n = 16), with interviews the most utilised (n = 29), followed by focus groups and meetings (n = 23) and validated frameworks (n = 7) as assessment tools. Indigenous food sovereignty assessment approaches were mostly around inclusion of traditional food knowledge (n = 21), or environmental/intervention sustainability (n = 15). Community-Based Participatory Research approaches were utilised across many studies (n = 26), with one-third utilising Indigenous methods of inquiry. Acknowledgement of data sovereignty (n = 6) or collaboration with Indigenous researchers (n = 4) was limited. CONCLUSION: This review highlights Indigenous food sovereignty assessment approaches in the literature worldwide. It emphasises the importance of using Indigenous research methodologies in research conducted by or with Indigenous Peoples and acknowledges Indigenous communities should lead future research in this area.

Retention of American Indian and Alaska Native participants in the National Alzheimer's Coordinating Center Uniform Data Set.

INTRODUCTION: The number of American Indian and Alaska Native (AI/AN) elders is expected to double by 2060. Thus it is imperative to retain AI/AN participants in longitudinal research studies to identify novel risk factors and potential targets for intervention for Alzheimer's disease and related dementias in these communities. METHODS: The National Alzheimer's Coordinating Center houses uniformly collected longitudinal data from the network of National Institute on Aging (NIA)-funded Alzheimer's Disease Research Centers (ADRCs). We used logistic regression to quantify participant retention at 43 ADRCs, comparing self-identified AI/AN participants to non-Hispanic White (NHW) participants, adjusting for potential confounding factors including baseline diagnosis, age, sex, education, and smoking. RESULTS: The odds of AI/AN participant retention at the first follow-up visit were significantly lower than those for NHW participants (adjusted odds ratio [aOR]: 0.599; 95%: 0.46-0.78; p < 0.001). DISCUSSION: These results suggest the need for improved strategies to retain AI/AN participants, perhaps including improved researcher-community relationships and community engagement and education. HIGHLIGHTS: American Indian and Alaska Native (AI/AN) research participants were retained to the first follow-up appointment at lower rates than non-Hispanic White (NHW) participants. AI/AN participants are retained at lower rates than NHW participants for long-term follow-up. The majority of AI/AN participants were not retained to the second follow-up visit.

Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review.

BACKGROUND: Conventional consent practices face ethical challenges in continuously evolving digital health environments due to their static, one-time nature. Dynamic consent offers a promising solution, providing adaptability and flexibility to address these ethical concerns. However, due to the immaturity of the concept and accompanying technology, dynamic consent has not yet been widely used in practice. This study aims to identify the facilitators of and barriers to adopting dynamic consent in real-world scenarios. METHODS: This scoping review, conducted in December 2022, adhered to the PRISMA Extension for Scoping Reviews guidelines, focusing on dynamic consent within the health domain. A comprehensive search across Web of Science, PubMed, and Scopus yielded 22 selected articles based on predefined inclusion and exclusion criteria. RESULTS: The facilitators for the adoption of dynamic consent in digital health ecosystems were the provision of multiple consent modalities, personalized alternatives, continuous communication, and the dissemination of up-to-date information. Nevertheless, several barriers, such as consent fatigue, the digital divide, complexities in system implementation, and privacy and security concerns, needed to be addressed. This study also investigated current technological advancements and suggested considerations for further research aimed at resolving the remaining challenges surrounding dynamic consent. CONCLUSIONS: Dynamic consent emerges as an ethically advantageous method for digital health ecosystems, driven by its adaptability and support for continuous, two-way communication between data subjects and consumers. Ethical implementation in real-world settings requires the development of a robust technical framework capable of accommodating the diverse needs of stakeholders, thereby ensuring ethical integrity and data privacy in the evolving digital health landscape.

Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.

Introduction: Indigenous Peoples are increasingly exerting governance and oversight over genomic research with citizens of their nations, raising questions about how best to enforce research regulation between American Indian, Alaska Native, and Native Hawaiian peoples and researchers. Methods: Using a community-engaged research approach, we conducted 42 semi-structured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members about their perspectives on ethical issues related to genetics research with Indigenous Peoples in the US. Results: We report findings related to (1) considerations for Indigenous governance, (2) institutional relationships upholding sovereignty, (3) expectations for research approvals, and (4) agreements enacting Indigenous governance. Participants described concerns about different ways of exerting oversight, relationships and agreements between Indigenous Peoples and researchers, and gaps that need to be addressed to strengthen existing governance of genomic data. Discussion: The results will ultimately guide policy-making and development of new strategies for Indigenous Peoples to enforce oversight in research to promote ethically and culturally appropriate research.

Nurturing Sustainability and Health: Exploring the Role of Short Supply Chains in the Evolution of Food Systems-The Case of Poland.

Over the last few decades, short food supply chains and local food markets, where farmers either sell their products directly to consumers or use a limited number of intermediaries, have developed worldwide in rural and urban areas. They complement conventional, often globalized, long food chains where small farmers have little bargaining power, and consumers cannot link the food they buy to a known agricultural producer or geographical area where the food is produced. The advantage of direct sales is that producers can obtain a higher price while consumers have easier access to fresh and seasonal food products. The main aim of the paper is to identify and characterize the spatial concentration of local food systems in Poland and their importance in sustainable development and food policy for healthy eating. As part of this study, an analysis of the statistical data of the Central Statistical Office for 2021 was carried out. Data obtained from the Chief Veterinary Inspectorate as of mid-2021 were analyzed to discuss the topic in detail. Descriptive methods and comparative analyses were used to understand regional differences. Absolute and proportional values were used for the research to enable better comparisons between regions, using the traditional method used in spatial structure studies, i.e., the distribution index (number of entities per 1000 inhabitants). The analysis identified spatial differences and possible implications for food policy and regional development. In addition, data on the number of marketplaces in Polish regions in 2022 were used. The study results indicated that short supply chains in the Polish food system contribute to increasing the availability of healthy local products, which may improve consumer health. However, despite these benefits, the results revealed challenges such as the limited production scale of local suppliers and the need to adapt to changing market conditions.

The 'Will of the People': The Populist Challenge to Democracy in the Name of Popular Sovereignty.

This article analyses how right-wing populist actors claim to represent the "voice of the people" and express "popular sovereignty" as a mode of challenging the traditional constitutional foundation of liberal democracy. This hypothesis is illustrated by an investigation into the political discourse of the Alternative for Germany considering how this populist actor has developed a political strategy claiming to speak for the "people" in an authentic and immediate fashion. The analysis of this actor's political mobilization shows how the championed direct democratic representation is couched in a sovereigntist discourse that relies on divisive identity markers rather than genuine democratic participation. Drawing on Carl Schmitt's concept of the political, the article interprets right-wing populism as invoking a permanent "state of exception" that employs an emotionally charged friend-enemy distinction whose logic of representing the people has the potential of triggering radical political change as well as undermining the integrity of rule-based democracy.

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.

Commoning genomic solidarity to improve global health equality.

This article underlines two key asynchronies between prevailing governing logic and expanding practices in somatic human genome editing that are hindering an effective and orderly translation of the new technology into public good. The first is a "genomic sovereignty" framing adopted by a number of non-Western countries that may exacerbate data biases in global research and that directs policy attention away from the necessary structural changes required to achieve non-discriminatory and equitable genomic healthcare. The other is a global deficiency in attending to "science at large": the challenge of regulating new assemblages of societal interests that advocate controversial or experimental research, often outside of conventional institutions and aided by "policy shopping." Both issues point to the fact that genomic research does not represent a well-defined scientific commons but rather a domain that requires active "commoning," with the aim of fostering genomic solidarity that coordinates responsible research within and across national boundaries.

Impacts of colonization on Indigenous food systems in Canada and the United States: a scoping review.

BACKGROUND: Indigenous populations in Canada and the United States (US) have maintained reciprocal relationships with nature, grounded in respect for and stewardship of the environment; however, disconnection from traditional food systems has generated a plethora of physical and mental health challenges for communities. Indigenous food sovereignty including control of lands were found to be factors contributing to these concerns. Therefore, our aim was to conduct a scoping review of the peer-reviewed literature to describe Indigenous disconnection from Indigenous food systems (IFS) in Canada and the US. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-SR) and Joanna Briggs Institute guidelines, we searched MEDLINE, SCOPUS, International Bibliography of the Social Sciences, Sociological Abstracts, and Bibliography of Native North Americans. Data was extracted from 41 studies and a narrative review completed based on study themes. RESULTS: The overarching theme identified in the included studies was the impact of colonization on IFS. Four sub-themes emerged as causes for Indigenous disconnection from traditional food systems, including: climate change; capitalism; legal change; and socio-cultural change. These sub-themes highlight the multiple ways in which colonization has impacted Indigenous food systems in Canada and the US and important areas for transformation. CONCLUSIONS: Efforts to reconnect Indigenous knowledge and values systems with future food systems are essential for planetary health and sustainable development. Traditional knowledge sharing must foreground authentic Indigenous inclusion within policymaking.

The Center for Indigenous Innovation and Health Equity: The Osage Nation's Mobile Market.

Over the last decade, the Osage Nation has actively worked to build Tribal food sovereignty within the reservation where rates of chronic disease and food insecurity are higher than the United States general population. In 2013, the Nation repurposed land toward the development of a Tribal farm with the aim of providing healthy foods to Osage citizens. Produce from the farm is distributed to elders groups, at Tribal Head Starts and schools, and to support the tribal food distribution program. These efforts have led to improved vegetable intake among Osage children, contributing to improved food security, but there is concern that tribal members who live in more remote areas of the Nation or have transportation or mobility issues are not able to access farm production. In partnership with the Center for Indigenous Health Equity (CIIHE), Osage Nation engaged in a community-based participatory research study to assess reservation areas with the greatest barriers to healthy foods and to identify community priorities for intervention. Guided by the principles of food sovereignty, which assert that intervention efforts must address the underlying structural issues of inequality, Osage has designed a mobile market initiative to expand the reach of the Harvest Land farm and deliver healthy, tribally produced meats, herbs, and fresh vegetables to areas with the highest rates of food insecurity. We describe the participatory research efforts and evaluation strategies that center Osage priorities for food security and food sovereignty.

The Choctaw Nation's Growing Hope Program.

The Choctaw Nation of Oklahoma's Historic Preservation Department (HPD) and the Center for Indigenous Health Equity (CIIHE) are partnering to implement and evaluate food sovereignty interventions to better understand the potential impact of such programs on individual and community health. The HPD's Growing Hope Program is a food sovereignty initiative that aims to restore traditional Choctaw gardens, which were once a physical, social, and cultural center of Choctaw life. The program combines heirloom seeds and the stories of their origins, gardening education and technical assistance, cooking classes, and a Choctaw youth internship program to support intergenerational knowledge and the restoration of culture and food security. Since its inception the program has provided Choctaw families with ancestral Choctaw cultivar seeds and provided the technical assistance to support the growing of sustainable, healthy, traditional Choctaw foods.