Challenges of Genetic Data Sharing in African Studies.

Data sharing is a valuable aspect of science and required by most funding bodies and journals. However, the national regulatory guidelines of many African nations do not explicitly allow for broad genetic data sharing. Given these restrictions, there is a need to reconsider these policies and propose creative solutions.

Exploring HIV/AIDS investigator perceptions of equity within research partnerships between low-and middle-income and high-income countries: a pilot survey.

BACKGROUND: Recommendations for research partnerships between low- and middle-income countries (LMICs) and high-income countries (HICs) stress the importance of equity within the collaboration. However, there is limited knowledge of the practical challenges and successes involved in establishing equitable research practices. This study describes the results of a pilot survey assessing key issues on LMIC/HIC partnership equity within HIV/AIDS research collaborations and compares perspectives of these issues between LMIC- and HIC-based investigators. METHODS: Survey participants were selected using clustered, random sampling and snowball sampling. Responses were compared between LMIC and HIC respondents using standard descriptive statistics. Qualitative respondent feedback was analyzed using a combination of exploratory and confirmatory thematic analysis. RESULTS: The majority of categories within four themes (research interests and resources; leadership, trust, and communication; cultural and ethical competence; representation and benefits) demonstrated relative consensus between LMIC and HIC respondents except for 'lack of trust within the partnership' which was rated as a more pronounced challenge by LMIC respondents. However, subcategories within some of the themes had significant differences between respondent groups including: equitable setting of the research agenda, compromise within a partnership, the role of regulatory bodies in monitoring partnerships for equity, and post-study access to research technology. CONCLUSIONS: These efforts serve as a proof-of-concept survey characterizing contemporary issues around international research partnership equity. The frequency and severity of specific equity issues can be assessed, highlighting similarities versus differences in experiences between LMIC and HIC partners as potential targets for further discussion and evaluation.

Mapping international research output within ethical, legal, and social implications (ELSI) of assisted reproductive technologies.

PURPOSE: Research about ethical, legal, and social implications (ELSI) of assisted reproductive technologies (ART) is influenced by cultural and value-based perspectives. It impacts regulations, funding, and clinical practice, and shapes the perception of ART in society. We analyze trends in the global literature on ELSI of ART between 1999 and 2019. As most output is produced by North America, Western Europe, and Australia, we focus on international research, i.e., academic articles studying a different country than that of the corresponding author. METHODS: The corpus, extracted from PubMed, Web of Science, and Scopus, includes 7714 articles, of which 1260 involved international research. Analysis is based on titles, abstracts and keywords, classification into ART fields and Topic Modeling, the countries of corresponding author, and countries mentioned in abstracts. RESULTS: An absolute increase in the number of international studies, and their relative proportion. Trends of decentralization are apparent, yet geographic centralization remains, which reflects an unequal distribution of research funds across countries and may result in findings that do not reflect global diversity of norms and values. Preference for studying conceptual challenges through philosophical analysis, and for fields that concern only a portion of ART cycles. Less attention was dedicated to economic analysis and barriers to access, or to knowledge of and attitudes. International studies provide an opportunity to expand and diversify the scope of ELSI research. CONCLUSION: We call on the research community to promote international collaborations, focus on less explored regions, and divert more attention to questions of cost, access, knowledge, and attitudes.

When serology contradicts the experience of the disease: Ethics, research, and announcements about Ebola in Guinea / Quand la sérologie contredit le vécu de la maladie : Éthique, recherche et annonce à propos d'Ebola en Guinée

INTRODUCTION: In Guinea, serological tests have shown the absence of antibodies in people declared cured of Ebola Virus Disease (EVD), thus refuting their previous diagnosis; and the presence of antibodies in contact cases who had not been diagnosed. These findings have led to reflections on the implications of telling those affected. PURPOSE OF RESEARCH: The objectives of this study are to identify the stakes of announcing these results in the Guinean health context. 24 people, cured of Ebola or with expertise in ethics or health, were interviewed between November 2019 and February 2020 in Conakry. They presented their experiences in terms of medical announcements in Guinea, and their opinions on the relevance of announcing these discordant serological results. RESULTS: Although it is an important step in the care relationship, the medical announcement sometimes seems neglected in Guinea. In addition, the opinions of the interviewees are rather homogeneous and favorable to the announcement to people seropositive to the Ebola virus who had not been diagnosed. However, their views are varied regarding the announcement of a negative serology to people declared cured of the EVD. They follow two trends, between Ebola survivors who say the announcement is undesirable, and ethicists and healthcare professionals for whom it is preferable. CONCLUSIONS: This survey shows that certain biological results deserve critical reflection before being announced, especially when they indicate a new diagnosis. In order to decide on a course of action for the situations exposed, a second expertise would be useful, taking into account our results and new knowledge about the virus.

Introduction: En Guinée, des analyses sérologiques ont montré une absence d'anticorps chez des personnes déclarées guéries de la maladie à virus Ebola (MVE), réfutant ainsi leur diagnostic antérieur, ainsi que la présence d'anticorps chez des cas contacts qui n'avaient pas été diagnostiqués. Ces résultats ont entraîné des réflexions sur les implications que pourrait avoir leur annonce aux personnes concernées. But de l'étude: Les objectifs de cette étude sont d'identifier les enjeux de l'annonce de ces résultats dans le contexte sanitaire guinéen. Vingt-quatre personnes, guéries d'Ebola ou ayant une expertise en éthique ou en santé ont été sollicitées lors d'une série d'entretiens menés entre novembre 2019 et février 2020 à Conakry (Guinée). Elles ont présenté leur expérience en matière d'annonce médicale et leur avis quant à la pertinence de l'annonce de ces résultats sérologiques discordants. Résultats: Bien qu'elle soit une étape importante de la relation de soins, l'annonce médicale semble parfois négligée en Guinée. En outre, les opinions des interlocuteurs sont plutôt homogènes et favorables à l'annonce de leur maladie aux personnes séropositives au virus Ebola qui n'avaient pas été diagnostiquées. Mais leurs avis sont diversifiés quant à l'annonce d'une sérologie négative à des personnes déclarées guéries de la MVE. Ils suivent deux tendances, entre les survivants d'Ebola qui déclarent que l'annonce n'est pas souhaitable, et les spécialistes de l'éthique et les professionnels de santé, pour qui elle est préférable. Conclusions: Cette enquête montre que certains résultats biologiques méritent une réflexion critique avant d'être annoncés, notamment lorsqu'ils indiquent un nouveau diagnostic. Afin de décider d'une conduite à tenir face aux situations exposées, une deuxième expertise s'avérerait utile, en prenant en compte nos résultats et de nouvelles connaissances sur le virus.

The Enhancing NeuroImaging Genetics through Meta-Analysis Consortium: 10 Years of Global Collaborations in Human Brain Mapping.

This Special Issue of Human Brain Mapping is dedicated to a 10-year anniversary of the Enhancing NeuroImaging Genetics through Meta-Analysis (ENIGMA) Consortium. It reports updates from a broad range of international neuroimaging projects that pool data from around the world to answer fundamental questions in neuroscience. Since ENIGMA was formed in December 2009, the initiative grew into a worldwide effort with over 2,000 participating scientists from 45 countries, and over 50 working groups leading large-scale studies of human brain disorders. Over the last decade, many lessons were learned on how best to pool brain data from diverse sources. Working groups were created to develop methods to analyze worldwide data from anatomical and diffusion magnetic resonance imaging (MRI), resting state and task-based functional MRI, electroencephalography (EEG), magnetoencephalography (MEG), and magnetic resonance spectroscopy (MRS). The quest to understand genetic effects on human brain development and disease also led to analyses of brain scans on an unprecedented scale. Genetic roadmaps of the human cortex were created by researchers worldwide who collaborated to perform statistically well-powered analyses of common and rare genetic variants on brain measures and rates of brain development and aging. Here, we summarize the 31 papers in this Special Issue, covering: (a) technical approaches to harmonize analysis of different types of brain imaging data, (b) reviews of the last decade of work by several of ENIGMA's clinical and technical working groups, and (c) new empirical papers reporting large-scale international brain mapping analyses in patients with substance use disorders, schizophrenia, bipolar disorders, major depression, posttraumatic stress disorder, obsessive compulsive disorder, epilepsy, and stroke.

Submission or subversion: survival and resilience of Chinese international research students in neoliberalised Australian universities.

Although scholars have noted the detrimental nature of the various changes in higher education prompted by neoliberalism, its impact on the experiences of international Higher Degree by Research (HDR) students has yet to be adequately studied. Informed by Bourdieu's concepts of doxa, field, habitus, and capital, this paper examines the ways in which neoliberalism as doxa in the Australian higher education field has colonised the perception and practice of Chinese international HDR students whilst some students were able to demonstrate resilience to the pervasive neoliberal practices. The paper draws on a larger qualitative research project including interviews with 18 Chinese HDR students from four Australian universities. Data suggest that Chinese HDR research students gradually developed intensified dispositions of self-reliance and self-exploitation in response to neoliberal academic practices whilst others were enculturated into a floating habitus (or vulnerable position) in relation to academic publishing as they attempted to negotiate the tensions across fields and over time. Data further reveal that some participants demonstrated resilience to neoliberalism when empowered by their supervisors with less utilitarian and more critically reflexive supervisory practices. The paper argues that the embrace of neoliberalism in the Australian higher education field has become widespread yet controversial, and that thinking and enacting resilience sociologically may de-neoliberalise the higher education field in Australia and beyond.

Trauma-Related Distress During the COVID-19 Pandemic In 59 Countries.

The COVID-19 pandemic has upended life like few other events in modern history, with differential impacts on varying population groups. This study examined trauma-related distress among 6,882 adults ages 18 to 94 years old in 59 countries during April to May 2020. More than two-thirds of participants reported clinically significant trauma-related distress. Increased distress was associated with unemployment; identifying as transgender, nonbinary, or a cisgender woman; being from a higher income country; current symptoms and positive diagnosis of COVID-19; death of a loved one; restrictive government-imposed isolation; financial difficulties; and food insecurity. Other factors associated with distress included working with potentially infected individuals, care needs at home, a difficult transition to working from home, conflict in the home, separation from loved ones, and event restrictions. Latin American and Caribbean participants reported more trauma-related distress than participants from Europe and Central Asia. Findings inform treatment efforts and highlight the need to address trauma-related distress to avoid long-term mental health consequences.

Evaluation of the Reliability and Validity of the Alzheimer's Disease-Related Quality of Life Instrument among Older Adults with Cognitive Impairment in Mainland China.

The purpose of this study is to examine the reliability and validity of the ADRQL instrument among older adults with cognitive impairment in mainland China. Three hundred older adults with cognitive impairment and their primary family caregivers from Wuhan participated in structured interviews. Cronbach's α and Kuder-Richardson Formula 20 were used to examine internal consistency reliability. Confirmatory factor analysis, Heterotrait-Monotrait ratios, and ordinary least square regression were used to assess the factorial validity, discriminant validity, and criterion validity. The ADRQL had acceptable reliability and validity, which can be used to assess overall quality of life for this population.

Pwojé Bon Vwazen (The Good Neighbor Project) An initiative to develop a community health worker project as a response to COVID-19 in Haiti.

Understanding the resource limitations in developing countries, a community health worker (CHW) project was developed to help educate, provide materials, and prevent the spread of COVID-19 in Haiti. CHWs have shown to be an evidence-driven alternative in resource-limited settings. Pwojé Bon Vwazen (The Good Neighbor Project) took place from May 2020 to September 2020 in Port-au-Prince, Haiti. Through the project, 9 CHWs were trained. The project had two coordinators in Haiti. The CHWs, over the period of 4 months, were able to reach 1350 individuals and provide them with education regarding spread and prevention of COVID-19 and distribute materials including soap, hand sanitizers, and masks which were sewn in Haiti. Access to affordable health care presents a unique challenge in resource-limited countries. Training of CHWs and implementation of a CHW program can be an alternative in certain situations.

Emerging ethical issues raised by highly portable MRI research in remote and resource-limited international settings.

Smaller, more affordable, and more portable MRI brain scanners offer exciting opportunities to address unmet research needs and long-standing health inequities in remote and resource-limited international settings. Field-based neuroimaging research in low- and middle-income countries (LMICs) can improve local capacity to conduct both structural and functional neuroscience studies, expand knowledge of brain injury and neuropsychiatric and neurodevelopmental disorders, and ultimately improve the timeliness and quality of clinical diagnosis and treatment around the globe. Facilitating MRI research in remote settings can also diversify reference databases in neuroscience, improve understanding of brain development and degeneration across the lifespan in diverse populations, and help to create reliable measurements of infant and child development. These deeper understandings can lead to new strategies for collaborating with communities to mitigate and hopefully overcome challenges that negatively impact brain development and quality of life. Despite the potential importance of research using highly portable MRI in remote and resource-limited settings, there is little analysis of the attendant ethical, legal, and social issues (ELSI). To begin addressing this gap, this paper presents findings from the first phase of an envisioned multi-staged and iterative approach for creating ethical and legal guidance in a complex global landscape. Section 1 provides a brief introduction to the emerging technology for field-based MRI research. Section 2 presents our methodology for generating plausible use cases for MRI research in remote and resource-limited settings and identifying associated ELSI issues. Section 3 analyzes core ELSI issues in designing and conducting field-based MRI research in remote, resource-limited settings and offers recommendations. We argue that a guiding principle for field-based MRI research in these contexts should be including local communities and research participants throughout the research process in order to create sustained local value. Section 4 presents a recommended path for the next phase of work that could further adapt these use cases, address ethical and legal issues, and co-develop guidance in partnership with local communities.

An interprofessional international research collaboration: exploration of key opportunities and challenges.

Interprofessional research has made substantive progress in Brazil over the past decade, in line with globalization and the worldwide expansion of university international relationships. This sustained growth of interprofessional research in many other countries around the world has been increasingly reported in the literature. Interprofessional international research involves interactions and exchanges between researchers from different countries with different professional and disciplinary backgrounds who collaborate to undertake scholarly work. The benefits of interprofessional international research are many and varied. In this paper, we explore the opportunities and challenges related to interprofessional international research collaboration while reflecting on our personal experiences of a study focused on interprofessional collaboration in primary care which spanned two countries - Brazil and UK. A key element in our international research has been regular discussion, negotiation, and agreement. Collectively, these elements have helped to ensure that our international empirical work can be sustained.

Enhancing the recruitment of postgraduate researchers from diverse countries: managing the application process.

International students form an important element of most universities' internationalisation strategies, especially for research and the recruitment of high calibre PhD students (PGRs). Despite the numerous studies of PGRs' post-arrival experiences, there is a major dearth of research into their pre-arrival, application experiences. Given the worldwide competition for high calibre PGRs, along with impact posed by the Covid-19 pandemic and by Brexit for the UK, it is vital for universities to ensure that factors clearly under their control, such as the information on their websites and the way they communicate, are as informative and helpful as possible. In this article, we draw on social media data to examine the challenges and uncertainties that Korean PGR applicants experienced in navigating the process of applying to UK universities. The paper compares their confusions with information available on university websites and recommends a series of points that higher education institutions should check for. It also reveals and discusses issues associated with communication. While the data has been collected from Korean social media websites, we argue that our paper has broader relevance for the following reasons. First, the same fundamental intercultural issues-different educational systems and different background knowledge-apply to PGR applicants from other countries and so their queries are likely to be similar or comparable. Second, the insights gained from social media websites to facilitate the application process and thereby enhance recruitment can usefully be applied to other countries and levels of study, in a way that has rarely been done to date.

Empirically Evaluated Suicide Prevention Program Approaches for Older Adults: A Review of the Literature from 2009-2021.

Mental health in later life and suicide risk among older adults are important topics for social work. There is evidence-based research to support the use selective and indicated strategies for suicide prevention, yet, universal prevention approaches are also needed. However, the extent to which the broader contexts of suicide have been examined remains largely absent from the literature. This article presents findings from a systematic review of articles published between 2009 and 2021, focusing what types of empirically evaluated suicide prevention programs effectively prevent and reduce suicidality in older adults. Using the PICO and PRISMA guidelines, a final sample of 8 articles were reviewed in this systematic review. The articles were categorized into three types of programs: 1) primary and home health care, 2) community-based outreach, and 3) counseling. The articles also examined the involvement of social workers in these programs. Following a description of the articles, the authors assess each study using the GRADE rating system. Lastly, the authors discuss the role of the social worker in mental health promotion and prevention strategies.

How are Baby Boomers Different from Older Adults in Terms of Their E-Government Services Use in South Korea?

E-government services have emerged and expanded for the last decades. The digitalization of social services presents both an opportunity and a challenge to the aging population who are effectively digital immigrants. This study examined socioeconomic factors associated with e-government services awareness and usage among the aging population, with a focus on the comparison between baby boomers and older adults. Data came from the 2015 E-Government Services Usage Survey, a nationally representative survey in South Korea (N = 1,255). The results showed a cohort difference in e-government services usage as 69.3% of baby boomers vs. 34.9% of older adults. The logistic regression results also suggested differences in factors associated with e-government services awareness and levels of use by cohort. Household income was positively associated with awareness among baby boomers, while age was negatively associated with awareness among older adults. The findings imply that gerontological social workers need to advocate for senior citizens by urging the government to pay more attention to the issues of digital exclusion faced by the majority of the current cohort of older adults as well as subgroups of baby boomers - in particular those who are economically marginalized.

Including all voices in international data-sharing governance.

BACKGROUND: Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. MAIN TEXT: The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decision-making. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. CONCLUSIONS: We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.

"I Wasn't in My Right Mind": Qualitative Findings on the Impact of Alcohol on Condom Use in Patients Living with HIV/AIDS in Brazil, Thailand, and Zambia (HPTN 063).

PURPOSE: There have been significant biomedical improvements in the treatment and prevention of HIV over the past few decades. However, new transmissions continue to occur. Alcohol use is a known barrier to medication adherence and consistent condom use and therefore may affect treatment as prevention (TasP) efforts. The purpose of this study was to further explore how alcohol is associated with condom use and sexual transmission behavior in three international cities. METHOD: HIV Prevention Trials Network 063 was an observational mixed-methods study of HIV-infected patients currently in care in Rio de Janeiro, Brazil; Chiang Mai, Thailand; and Lusaka, Zambia. Across these three global cities, 80 qualitative interviews were conducted from 2010 to 2012. From these interviews, quotes related to substance use, almost all of which were alcohol, were analyzed using thematic analysis to identify how the use was related to sexual transmission behaviors. RESULTS: Overall, the theme that alcohol impairs cognitive abilities emerged from the data and included the following subthemes: expectancies, impaired decision-making, loss of control, and less concern for others. Themes specific to international settings and risk subgroups were also identified. CONCLUSION: Our analysis identified how alcohol influences sexual transmission behavior in HIV patients in three international settings. These findings may provide direction for content development for future secondary prevention interventions to effectively implement TasP internationally.

Care Planning: What Works, for Whom, and in What Circumstances? A Rapid Realist Review.

Care planning has been described as a "better conversation" that helps people with long-term conditions to be in control of planning their care. Each person with long-term conditions faces individual challenges and each health care setting is fundamentally different, so there is a need for empirical testing of the specific mechanisms through which care planning may lead to health improvements. A rapid realist review was conducted to unearth underpinning mechanisms leading to outcomes in particular contexts. These are expressed in the form of realist theories, which are developed and refined through the review process. Fifty-one full text studies were included in the review. Seven program theories were iteratively tested and refined. A detailed description of what care planning is and what it should look like in practice has been achieved in the form of realist theories.

Conducting research through cross national collaboration.

AIM: To explore the collaborative nature of an international research project with other advanced practice nurse researchers and critically analyse the process. BACKGROUND: Research within the nursing community is recognized internationally as important to ensure that nurses participate in cutting-edge health care and promote evidence-based practices, yet there is little detail found in literature on how a successful collaborative relationship is initiated and conducted in advanced practice research. DESIGN: Discussion paper: The purpose of this paper is to discuss the process of collaboration on a research study among advanced practice nurses from four countries who are members of an international organization. IMPLICATIONS FOR NURSING: The collaborative process in international nursing research can be challenging and rewarding. It is important to remember that there is a relationship between the complexity of the study and the time required to complete it. Keys to success include following established guidelines. CONCLUSION: This project was a valuable experience in developing collaborative relationships as well as creating partnerships for future research to build on the knowledge gained. The authors' linkages to universities facilitated their participation in the research and completion of the ethical review processes. The use of social media and university resources was indispensable.

Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease.

Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time for international collaboration in DIPG research, to provide new hope for children, parents and medical professionals fighting DIPG. In a first step towards collaboration, in 2011, a network of biologists and clinicians working in the field of DIPG was established within the European Society for Paediatric Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG Network. By bringing together biomedical professionals and parents as patient representatives, several collaborative DIPG-related projects have been realized. With help from experts in the fields of information technology, and legal advisors, an international, web-based comprehensive database was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence Interval (CI) 5.6-6.4 months) and the median overall survival is 11.0 months (95% CI 10.5-11.5 months). At two and five years post-diagnosis, 10 and 2% of patients are alive, respectively. The establishment of the SIOPE DIPG Network and SIOPE DIPG Registry means a paradigm shift towards collaborative research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG.

Should Social Value Obligations be Local or Global?

According to prominent bioethics scholars and international guidelines, researchers and sponsors have obligations to ensure that the products of their research are reasonably available to research participants and their communities. In other words, the claim is that research is unethical unless it has local social value. In this article, we argue that the existing conception of reasonable availability should be replaced with a social value obligation that extends to the global poor (and not just research participants and host communities). To the extent the social value requirement has been understood as geographically constrained to the communities that host research and the countries that can afford the products of research, it has neglected to include the global poor as members of the relevant society. We argue that a new conception of social value obligations is needed for two reasons. First, duties of global beneficence give reason for researchers, sponsors, and institutions to take steps to make their products more widely accessible. Second, public commitments made by many institutions acknowledge and engender responsibilities to make the products of research more accessible to the global poor. Future research is needed to help researchers and sponsors discharge these obligations in ways that unlock their full potential.