Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa.

BACKGROUND: Several factors thwart successful data sharing-ambiguous or fragmented regulatory landscapes, conflicting institutional/researcher interests and varying levels of data science-related expertise are among these. Traditional ethics oversight mechanisms and practices may not be well placed to guarantee adequate research oversight given the unique challenges presented by digital technologies and artificial intelligence (AI). Data-intensive research has raised new, contextual ethics and legal challenges that are particularly relevant in an African research setting. Yet, no empirical research has been conducted to explore these challenges. MATERIALS AND METHODS: We explored REC members' views and experiences on data sharing by conducting 20 semi-structured interviews online between June 2022 and February 2023. Using purposive sampling and snowballing, we recruited representatives across sub-Saharan Africa (SSA). We transcribed verbatim and thematically analysed the data with Atlas.ti V22. RESULTS: Three dominant themes were identified: (i) experiences in reviewing data sharing protocols, (ii) perceptions of data transfer tools and (iii) ethical, legal and social challenges of data sharing. Several sub-themes emerged as: (i.a) frequency of and approaches used in reviewing data sharing protocols, (i.b) practical/technical challenges, (i.c) training, (ii.a) ideal structure of data transfer tools, (ii.b) key elements of data transfer tools, (ii.c) implementation level, (ii.d) key stakeholders in developing and reviewing a data transfer agreement (DTA), (iii.a) confidentiality and anonymity, (iii.b) consent, (iii.c) regulatory frameworks, and (iii.d) stigmatisation and discrimination. CONCLUSIONS: Our results indicated variability in REC members' perceptions, suboptimal awareness of the existence of data protection laws and a unanimously expressed need for REC member training. To promote efficient data sharing within and across SSA, guidelines that incorporate ethical, legal and social elements need to be developed in consultation with relevant stakeholders and field experts, along with the training accreditation of REC members in the review of data-intensive protocols.

Ethical and social reflections on the proposed European Health Data Space.

The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application of the General Data Protection Regulation (GDPR). The introduction of the draft regulation for a European Health Data Space (EHDS) in May 2022 seeks to address some of these legal issues. If passed, it will create an obligation to share electronic health data for certain secondary purposes. While there is a clear need to address the legal complexities involved with data sharing, it is critical that any proposed reforms are in line with ethical principles and the expectations of the data subjects. In this paper we offer a critique of the EHDS and offer some recommendations for this evolving regulatory space.

Reflection over compliance: Critiquing mandatory data sharing policies for qualitative research.

Many journals are moving towards a 'Mandatory Inclusion of Raw Data' (MIRD) model of data sharing, where it is expected that raw data be publicly accessible at article submission. While open data sharing is beneficial for some research topics and methodologies within health psychology, in other cases it may be ethically and epistemologically questionable. Here, we outline several questions that qualitative researchers might consider surrounding the ethics of open data sharing. Overall, we argue that universal open raw data mandates cannot adequately represent the diversity of qualitative research, and that MIRD may harm rigorous and ethical research practice within health psychology and beyond. Researchers should instead find ways to demonstrate rigour thorough engagement with questions surrounding data sharing. We propose that all researchers utilise the increasingly common 'data availability statement' to demonstrate reflexive engagement with issues of ethics, epistemology and participant protection when considering whether to open data.

An Egalitarian Perspective on Information Sharing: The Example of Health Care Priorities.

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically "non-actionable," we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients' comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient's situation and the underlying considerations shaping health care professionals' choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person.

Vacinas e desinformação: uma análise de conteúdo sobre fake newsapuradas por plataformas de debunkingem redes sociais / Vaccines and disinformation: a content analysis on fake news verified by debunking platforms on social networks / Vacunas y desinformación: un análisis de contenidos sobre fake news verificadas por las plataformas de debunking en las redes sociales

O impacto das fake news chegou à área da saúde e a desconfiança em relação às vacinas trouxe de volta doenças até então erradicadas. Mas como os discursos antivacinasão construídos nas redes sociais? Neste trabalho, 80fake news com foco nas vacinas foram coletadas de sites brasileiros que realizam debunking, uma estratégia de detecção e desmascaramento de desinformação e fake news. A partir da aplicação de um protocolo analítico, mapeamos as principais características presentes na elaboração dessas publicações. A análise de conteúdo revelou que o Facebook e o WhatsApp são as redes preferidas para esse tipo de compartilhamento. Cerca de 59% dos conteúdos são totalmente falsos e a maioria dos discursos destaca possíveis riscos das vacinas como estratégias de convencimento. As fontes mais referenciadas são supostamente médicos e cientistas, para criar confiabilidade. O levantamento aponta ainda que 60% das publicações apresentaram erros gramaticais e ortográficos na elaboração dos textos

The impact of fake news reached the health area and distrust in relation to vaccines brought back diseases that had been eradicated. But how are these anti-vaccine discourses constructed in social medias? In this paper, 80 fake news stories focusing on vaccines were collected through Brazilian websites that perform debunking, a strategy for detecting and unmasking misinformation and fake news. From the application of an analytical protocol, the main characteristics present in the elaboration of these publications were mapped. Content analysis revealed that Facebook and WhatsApp are the preferred medias for this type of sharing. About 59% of the contents are totally false and most of the speeches highlight the risks of vaccines as a convincing strategy. The most referenced sources are supposedly doctors and scientists to create re-liability. The survey also points out that 60% of publications have grammatical and spelling errors in the preparation of texts

El impacto de las fake news llegó al área de la salud y la desconfianza en las vacunas trajo de vuelta enfermedades erradicadas. Pero, ¿cómo se construyen los discursos antivacunas en las redes sociales? En este trabajo, se recopilaron 80 noticias falsas centradas en vacunas a través de sitios web brasileños que realizan debunking, una estrategia para detectar y desenmascarar información errónea y noticias falsas. A partir de la aplicación de un protocolo analítico, mapeamos las principales características presentes en la elaboración de estas publicaciones. El análisis de contenido reveló que Facebook y WhatsApp son las redes preferidas para este tipo de intercambio. Alrededor del 59% del contenido es completamente falso y la mayoría destaca los posibles riesgos de las vacunas como estrategias convincentes. Las fuentes más referenciadas son supuestamente médicos y científicos para crear confiabilidad. La encuesta señala que el 60% de las publicaciones tenían errores gramaticales y ortográficos

Learning through the grapevine and the impact of the breadth and depth of social networks.

We study how communication platforms can improve social learning without censoring or fact-checking messages, when they have members who deliberately and/or inadvertently distort information. Message fidelity depends on social network depth (how many times information can be relayed) and breadth (the number of others with whom a typical user shares information). We characterize how the expected number of true minus false messages depends on breadth and depth of the network and the noise structure. Message fidelity can be improved by capping depth or, if that is not possible, limiting breadth, e.g., by capping the number of people to whom someone can forward a given message. Although caps reduce total communication, they increase the fraction of received messages that have traveled shorter distances and have had less opportunity to be altered, thereby increasing the signal-to-noise ratio.

Learning to think critically about health using digital technology in Ugandan lower secondary schools: A contextual analysis.

INTRODUCTION: The world is awash with claims about the effects of health interventions. Many of these claims are untrustworthy because the bases are unreliable. Acting on unreliable claims can lead to waste of resources and poor health outcomes. Yet, most people lack the necessary skills to appraise the reliability of health claims. The Informed Health Choices (IHC) project aims to equip young people in Ugandan lower secondary schools with skills to think critically about health claims and to make good health choices by developing and evaluating digital learning resources. To ensure that we create resources that are suitable for use in Uganda's secondary schools and can be scaled up if found effective, we conducted a context analysis. We aimed to better understand opportunities and barriers related to demand for the resources, how the learning content overlaps with existing curriculum and conditions in secondary schools for accessing and using digital resources, in order to inform resource development. METHODS: We used a mixed methods approach and collected both qualitative and quantitative data. We conducted document analyses, key informant interviews, focus group discussions, school visits, and a telephone survey regarding information communication and technology (ICT). We used a nominal group technique to obtain consensus on the appropriate number and length of IHC lessons that should be planned in a school term. We developed and used a framework from the objectives to code the transcripts and generated summaries of query reports in Atlas.ti version 7. FINDINGS: Critical thinking is a key competency in the lower secondary school curriculum. However, the curriculum does not explicitly make provision to teach critical thinking about health, despite a need acknowledged by curriculum developers, teachers and students. Exam oriented teaching and a lack of learning resources are additional important barriers to teaching critical thinking about health. School closures and the subsequent introduction of online learning during the COVID-19 pandemic has accelerated teachers' use of digital equipment and learning resources for teaching. Although the government is committed to improving access to ICT in schools and teachers are open to using ICT, access to digital equipment, unreliable power and internet connections remain important hinderances to use of digital learning resources. CONCLUSIONS: There is a recognized need for learning resources to teach critical thinking about health in Ugandan lower secondary schools. Digital learning resources should be designed to be usable even in schools with limited access and equipment. Teacher training on use of ICT for teaching is needed.

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life.

The field of genomics has benefited greatly from its "openness" approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number of international genomics efforts, the equity of openness is under question. The United Nations Convention of Biodiversity aims to develop and adopt a standard policy on access and benefit-sharing for sequence information across signatory parties. This standardization will have profound implications on genomics research, requiring a new definition of open data sharing. The redefinition of openness is not unwarranted, as its limitations have unintentionally introduced barriers of engagement to some, including Indigenous Peoples. This commentary provides an insight into the key challenges of openness faced by the researchers who aspire to protect and conserve global biodiversity, including Indigenous flora and fauna, and presents immediate, practical solutions that, if implemented, will equip the genomics community with both the diversity and inclusivity required to respectfully protect global biodiversity.

Genetic data sharing and artificial intelligence in the era of personalized medicine based on a cross-sectional analysis of the Saudi human genome program.

The success of the Saudi Human Genome Program (SHGP), one of the top ten genomic programs worldwide, is highly dependent on the Saudi population embracing the concept of participating in genetic testing. However, genetic data sharing and artificial intelligence (AI) in genomics are critical public issues in medical care and scientific research. The present study was aimed to examine the awareness, knowledge, and attitude of the Saudi society towards the SHGP, the sharing and privacy of genetic data resulting from the SHGP, and the role of AI in genetic data analysis and regulations. Results of a questionnaire survey with 804 respondents revealed moderate awareness and attitude towards the SHGP and minimal knowledge regarding its benefits and applications. Respondents demonstrated a low level of knowledge regarding the privacy of genetic data. A generally positive attitude was found towards the outcomes of the SHGP and genetic data sharing for medical and scientific research. The highest level of knowledge was detected regarding AI use in genetic data analysis and privacy regulation. We recommend that the SHGP's regulators launch awareness campaigns and educational programs to increase and improve public awareness and knowledge regarding the SHGP's benefits and applications. Furthermore, we propose a strategy for genetic data sharing which will facilitate genetic data sharing between institutions and advance Personalized Medicine in genetic diseases' diagnosis and treatment.

Data sharing and privacy issues in neuroimaging research: Opportunities, obstacles, challenges, and monsters under the bed.

Collaborative networks and data sharing initiatives are broadening the opportunities for the advancement of science. These initiatives offer greater transparency in science, with the opportunity for external research groups to reproduce, replicate, and extend research findings. Further, larger datasets offer the opportunity to identify homogeneous patterns within subgroups of individuals, where these patterns may be obscured by the heterogeneity of the neurobiological measure in smaller samples. However, data sharing and data pooling initiatives are not without their challenges, especially with new laws that may at first glance appear quite restrictive for open science initiatives. Interestingly, what is key to some of these new laws (i.e, the European Union's general data protection regulation) is that they provide greater control of data to those who "give" their data for research purposes. Thus, the most important element in data sharing is allowing the participants to make informed decisions about how they want their data to be used, and, within the law of the specific country, to follow the participants' wishes. This framework encompasses obtaining thorough informed consent and allowing the participant to determine the extent that they want their data shared, many of the ethical and legal obstacles are reduced to just monsters under the bed. In this manuscript we discuss the many options and obstacles for data sharing, from fully open, to federated learning, to fully closed. Importantly, we highlight the intersection of data sharing, privacy, and data ownership and highlight specific examples that we believe are informative to the neuroimaging community.

The European Genome-phenome Archive in 2021.

The European Genome-phenome Archive (EGA - https://ega-archive.org/) is a resource for long term secure archiving of all types of potentially identifiable genetic, phenotypic, and clinical data resulting from biomedical research projects. Its mission is to foster hosted data reuse, enable reproducibility, and accelerate biomedical and translational research in line with the FAIR principles. Launched in 2008, the EGA has grown quickly, currently archiving over 4,500 studies from nearly one thousand institutions. The EGA operates a distributed data access model in which requests are made to the data controller, not to the EGA, therefore, the submitter keeps control on who has access to the data and under which conditions. Given the size and value of data hosted, the EGA is constantly improving its value chain, that is, how the EGA can contribute to enhancing the value of human health data by facilitating its submission, discovery, access, and distribution, as well as leading the design and implementation of standards and methods necessary to deliver the value chain. The EGA has become a key GA4GH Driver Project, leading multiple development efforts and implementing new standards and tools, and has been appointed as an ELIXIR Core Data Resource.