Groundbreaking data-sharing techniques and quick access to stored research data from the African continent are highly beneficial to create diverse unbiased datasets to inform digital health technologies and artificial intelligence in healthcare. Yet health researchers in sub-Saharan Africa (SSA) experience individual and collective challenges that render them cautious and even hesitant to share data despite acknowledging the public health benefits of sharing. This qualitative study reports on the perspectives of health researchers regarding strategies to mitigate these challenges. In-depth interviews were conducted via Microsoft Teams with 16 researchers from 16 different countries across SSA between July 2022 and April 2023. Purposive and snowball sampling techniques were used to invite participants via email. Recorded interviews were transcribed, cleaned, coded and managed through Atlas.ti.22. Thematic Analysis was used to analyse the data. Three recurrent themes and several subthemes emerged around strategies to improve governance of data sharing. The main themes identified were (1) Strategies for change at a policy level: guideline development, (2) Strengthening data governance to improve data quality and (3) Reciprocity: towards equitable data sharing. Building trust is central to the promotion of data sharing amongst researchers on the African continent and with global partners. This can be achieved by enhancing research integrity and strengthening micro and macro level governance. Substantial resources are required from funders and governments to enhance data governance practices, to improve data literacy and to enhance data quality. High quality data from Africa will afford diversity to global data sets, reducing bias in algorithms built for artificial intelligence technologies in healthcare. Engagement with multiple stakeholders including researchers and research communities is necessary to establish an equitable data sharing approach based on reciprocity and mutual benefit.

The sharing of health data is an essential component in the provision of healthcare, in medical research, and disease surveillance. Health data sharing is subject to regulatory frameworks that vary across jurisdictions. In Africa, numerous factors complicate the regulation of health data sharing, including technological, motivational, economic, and political barriers, as well as ethical and legal challenges. This comparative study examines the regulation of health data sharing in Africa by comparing and contrasting the legal and policy frameworks of five African countries. The study identifies gaps and inconsistencies in the current regulatory regimes and provides recommendations for improving the regulation of health data sharing in Africa.

Although digital health promotion (DHP) technologies for young people are increasingly available in low- and middle-income countries (LMICs), there has been insufficient research investigating whether existing ethical and policy frameworks are adequate to address the challenges and promote the technological opportunities in these settings. In an effort to fill this gap and as part of a larger research project, in November 2022, we conducted a workshop in Cape Town, South Africa, entitled 'Unlocking the Potential of Digital Health Promotion for Young People in Low- and Middle-Income Countries'. The workshop brought together 25 experts from the areas of digital health ethics, youth health and engagement, health policy and promotion and technology development, predominantly from sub-Saharan Africa (SSA), to explore their views on the ethics and governance and potential policy pathways of DHP for young people in LMICs. Using the World Café method, participants contributed their views on (i) the advantages and barriers associated with DHP for youth in LMICs, (ii) the availability and relevance of ethical and regulatory frameworks for DHP and (iii) the translation of ethical principles into policies and implementation practices required by these policies, within the context of SSA. Our thematic analysis of the ensuing discussion revealed a willingness to foster such technologies if they prove safe, do not exacerbate inequalities, put youth at the center and are subject to appropriate oversight. In addition, our work has led to the potential translation of fundamental ethical principles into the form of a policy roadmap for ethically aligned DHP for youth in SSA.

Sharing large digital-first datasets, including for purposes for which they were not originally intended, is a hallmark of the "big data revolution". Through their routine operations, private commercial companies collect massive amounts of diverse data from their customers, some of which may interest those working in the public sector, such as health researchers. Researchers and government agencies worldwide have been increasingly using data from commercial entities (such as Google, Microsoft, Apple, Facebook/Meta, Twitter/X and Amazon, among others) to generate health-related insights. This article explores ethical issues raised by the practice of commercial companies sharing consumer data with third parties for the purposes of promoting health in the sub-Saharan African (SSA) context. First, as an illustrative example, it examines some of the ways telecommunication (telecom) companies in SSA shared mobility data from cellphone users with public health researchers during the COVID-19 pandemic. Second, it examines a recent debate about the ethical responsibilities of companies that collect, process and share user-generated data, drawing implications for the SSA context. Finally, since this is a relatively understudied subject, we point out some areas where future conceptual and empirical work could contribute to the development of relevant ethics guidance and regulatory governance in SSA.

Innovative information-sharing techniques and rapid access to stored research data as scientific currency have proved highly beneficial in healthcare and health research. Yet, researchers often experience conflict between data sharing to promote health-related scientific knowledge for the common good and their personal academic advancement. There is a scarcity of studies exploring the perspectives of health researchers in sub-Saharan Africa (SSA) regarding the challenges with data sharing in the context of data-intensive research. The study began with a quantitative survey and research, after which the researchers engaged in a qualitative study. This qualitative cross-sectional baseline study reports on the challenges faced by health researchers, in terms of data sharing. In-depth interviews were conducted via Microsoft Teams between July 2022 and April 2023 with 16 health researchers from 16 different countries across SSA. We employed purposive and snowballing sampling techniques to invite participants via email. The recorded interviews were transcribed, coded and analysed thematically using ATLAS.ti. Five recurrent themes and several subthemes emerged related to (1) individual researcher concerns (fears regarding data sharing, publication and manuscript pressure), (2) structural issues impacting data sharing, (3) recognition in academia (scooping of research data, acknowledgement and research incentives) (4) ethical challenges experienced by health researchers in SSA (confidentiality and informed consent, commercialisation and benefit sharing) and (5) legal lacunae (gaps in laws and regulations). Significant discomfort about data sharing exists amongst health researchers in this sample of respondents from SSA, resulting in a reluctance to share data despite acknowledging the scientific benefits of such sharing. This discomfort is related to the lack of adequate guidelines and governance processes in the context of health research collaborations, both locally and internationally. Consequently, concerns about ethical and legal issues are increasing. Resources are needed in SSA to improve the quality, value and veracity of data-as these are ethical imperatives. Strengthening data governance via robust guidelines, legislation and appropriate data sharing agreements will increase trust amongst health researchers and data donors alike.

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.

Mobile phone technology has been a catalyst that has added an innovative dimension in health care and created new opportunities for digital health services. These digital devices can be viewed as an extension of the person using them due to the deluge of personal information that can be collected and stored on them. Data collected on mobile phones are used extensively in health services and research. Personal, mobility and location data are constantly collected. The unique mobile phone architecture provides for an easy flow of data between various role players such as application developers and phone manufacturers. The collection, storage and sharing of personal information on mobile phones elicit various legal questions relating to the protection of privacy, consent, liability and the accountability of stakeholders such as health insurance providers, hospital groups and national departments of health. Significance: We analyse the major legal concerns of mobility and location data collection and processing through mobile phones in the context of health care and provide recommendations to develop data protection guidelines that are built on the principles of lawfulness, fairness and transparency. The issues explored are of relevance in an African context and to a broader international audience.

Interest in the governance of big data is growing exponentially. However, finding the right balance between making large volumes of data accessible, and safeguarding privacy, preventing data misuse, determining authorship and protecting intellectual property remain challenging. In sub-Saharan Africa (SSA), research ethics committees (RECs) play an important role in reviewing data-intense research protocols. However, this regulatory role must be embedded in a context of robust governance. There is currently a paucity of published literature on how big data are regulated in SSA and if the capacity to review protocols is sufficient. The aim of this study was to provide a broad overview of REC members' awareness and perceptions of big data governance in SSA. A descriptive cross-sectional survey was conducted from April to July 2022. We invited 300 REC members to participate in our online survey via Research Electronic Data Capture (REDCap). A total of 140 REC members, representing 34 SSA countries, completed the online survey. Awareness of data governance laws, policies and guidelines was variable across the subcontinent. A quarter of respondents (25%) indicated that national regulations on the trans border flow of research data are inadequate. Institutional policies on research data protection were also regarded as being inadequate. Most respondents (64%) believed that they lacked experience in reviewing data-intense protocols. Data governance and regulation in SSA need to be strengthened at both national and institutional levels. There is a strong need for capacity development in the review of data-intense research protocols on the subcontinent.Significance:This is the first empirical survey in SSA in which awareness and perspectives of REC members have been explored specifically relating to the review of data-intense research protocols. Big data have raised new ethics and legal challenges, and this survey provides a broad overview of these challenges in SSA. Our study confirms that knowledge and awareness of legislative frameworks and ethics guidance in SSA vary considerably where big data are concerned. The research results could be useful for a range of stakeholders, including RECs, data scientists, researchers, research and academic institutions, government decision -makers and artificial intelligence (AI) coders.

The data ecosystem is complex and involves multiple stakeholders. Researchers and scientists engaging in data-intensive research collect, analyse, store, manage and share large volumes of data. Consequently, capturing researchers’ and scientists’ views from multidisciplinary fields on data use, sharing and governance adds an important African perspective to emerging debates. We conducted a descriptive cross-sectional survey and received 160 responses from researchers and scientists representing 43 sub-Saharan African countries. Whilst most respondents were satisfied with institutional data storage processes, 40% indicated that their organisations or institutions did not have a formally established process for storing data beyond the life cycle of the project. Willingness to share data was generally high, but increased when data privacy was ensured. Robust governance frameworks increased the willingness to share, as did the regulation of access to data on shared platforms. Incentivising data sharing remains controversial. Respondents were satisfied with exchanging their data for co-authorship on publications (89.4%) and collaboration on projects (77.6%). However, respondents were split almost equally in terms of sharing their data for commercial gain. Regarding the process of managing data, 40.6% indicated that their organisations do not provide training on best practices for data management. This could be related to a lack of resources, chronic institutional under-investment, and suboptimal research training and mentorship in sub-Saharan Africa. The sustainability of data sharing may require ethical incentive structures to further encourage researchers and scientists. Tangible infrastructure to facilitate such sharing is a prerequisite. Capacity development in data governance for researchers and scientists is sorely needed. Significance: Data sharing is necessary to advance science, yet there are many constraints. In this study, we explored factors that promote a willingness to share, as well as constraining factors. Seeking potential solutions to improve data sharing is a scientific and ethical imperative. The standardisation of basic data sharing and data transfer agreements, and the development of a Data Access Committee will strengthen data governance and facilitate responsible data sharing in sub-Saharan Africa. Funders, institutions, researchers and scientists ought to jointly contribute to fair and equitable data use and sharing during and beyond the life cycle of research projects.

PUBLISHED: 30 May 2023 Big data, data science and artificial intelligence (AI) in research hold enormous potential to improve health and the quality of life for all. However, when harnessing benefit from new digital technologies, a major concern is to minimise harm. Inherent bias in historical data presents a major threat to the veracity of data and the impact thereof on algorithms, machine learning and, ultimately, AI.

Data sharing in research is fraught with controversy. Academic success is premised on competitive advantage, with research teams protecting their research findings until publication. Research funders, by contrast, often require data sharing. Beyond traditional research and funding requirements, surveillance data have become contentious. Public health emergencies involving pathogens require intense genomic surveillance efforts and call for the rapid sharing of data on the basis of public interest. Under these circumstances, timely sharing of data becomes a matter of scientific integrity. During the COVID-19 pandemic, the transformative potential of genomic pathogen data sharing became obvious and advanced the debate on data sharing. However, when the genomic sequencing data of the omicron (B.1.1.529) variant was shared and announced by scientists in southern Africa, various challenges arose, including travel bans. The scientific, economic, and moral impact was catastrophic. Yet, travel restrictions failed to mitigate the spread of the variant already present in countries outside Africa. Public perceptions of the negative effect of data sharing are detrimental to the willingness of research participants to consent to sharing data in postpandemic research and future pandemics. Global health governance organisations have an important role in developing guidance on responsible sharing of genomic pathogen data in public health emergencies.

While the COVID-19 pandemic has captured the attention of the global community since the end of 2019, deadly health pandemics are not new to Africa. Tuberculosis (TB), malaria and human immunodeficiency virus (HIV) count amongst other serious diseases that have had a catastrophic impact on the African continent. Effective responses to such pandemics require high-quality, comprehensive data sets that can inform policymaking and enhance healthcare decision-making. While data is driving the information economy in the 21st century, the scarcity in Africa of carefully curated, large epidemiologic data sources and analytical capacity to rapidly identify and understand emerging infectious diseases poses a major challenge to mounting a time-sensitive response to unfolding pandemics. Data access, sharing and transfer between countries are crucial to effectively managing current and future health pandemics. Data access and sharing, however, raises questions about personal privacy, the adequacy of governance mechanisms to regulate cross-border data flows, and ethical issues relating to the collection and use of personal data in the interests of public health. Sub-Saharan Africa’s most research-intensive countries are characterised by diverse data management and privacy governance frameworks. Such regional variance can impede time-sensitive data sharing and highlights the need for urgent governance reforms to facilitate effective decision-making in response to rapidly evolving public health threats. Significance: We explore governance considerations that ought to apply to the collection, transfer, and use of data in public health emergencies. Specifically, we provide an overview of the prevailing data sharing governance landscape in selected African countries. In doing so, we identify limitations and gaps that impede effective data collation, sharing and analysis. This work could find utility amongst a range of stakeholders, including bioinformaticians, epidemiologists, artificial intelligence coders, and government decision-makers. While this work focuses primarily on an African context, the issues explored are of universal concern and therefore of relevance to a broader international audience.

Background. Coronavirus disease (COVID-19) has imposed unprecedented stressors on South Africa (SA)'s healthcare system. Superimposed on the country's quadruple burden of disease, pandemic-related care further exposes existing inequities. Some of these inequities are specific to hospital-based inpatient services, such as the geographical maldistribution of hospital beds, lack of oxygen supplies and assisted ventilation, and scarcity of trained healthcare workers. Certain high-risk groups, such as individuals with cardiometabolic comorbidity, are likely to develop severe COVID-19 disease requiring hospitalisation with potential for a prolonged length of stay (LoS). It may be helpful for health authorities to identify those at risk for prolonged LoS to facilitate appropriate health systems planning. Objectives. To identify hospital admission laboratory parameters associated with a hospital stay >14 days in patients with COVID-19 pneumonia. Methods. A retrospective observational study design was used. Laboratory data were obtained from an SA private laboratory for 642 inpatients with suspected or confirmed COVID-19 pneumonia, comprising 7 months of admission laboratory data from six private hospitals in Johannesburg, Gauteng Province. Results. Of 642 hospital admissions for pneumonia, 497 were confirmed to have COVID-19 infection (reverse transcription-polymerase chain reaction test positive). In the COVID-19-positive group, hospital LoS was prolonged in 35.4% of admissions. Univariate analysis demonstrated an association with the following risk factors for prolonged LoS: older age; male sex; high serum creatinine, sodium (Na), chloride, potassium and urea levels and low estimated glomerular filtration rate; raised white blood cell count, lymphopenia, neutrophilia and an elevated neutrophil-to-lymphocyte ratio (NLR); and elevated levels of D-dimers, interleukin-6 (IL-6), and procalcitonin (PCT). The strongest univariate associations (relative risk (RR) >= 2.0) with a hospital stay >14 days were high Na levels, NRL >18, high PCT levels and IL-6 >40 pg/mL. On multivariable analysis, the following factors remained significantly associated with prolonged LoS: older age (RR 1.015 per year of age; 95% confidence interval (CI) 1.005 - 1.024); hypernatraemia (RR 1.80; 95% CI 1.25 - 2.60); hyperkalaemia (RR 1.61; 95% CI 1.18 - 2.20); and neutrophilia (RR 1.47; 95% CI 1.15 - 1.88). Conclusions. COVID-19 pandemic preparedness requires hospital-based inpatient care to be prioritised in resource-limited settings, and availability of beds and prompt admissions are essential to ensure good clinical outcomes. In this study of COVID-19 patients admitted with pneumonia, multivariable analysis showed older age, hypernatraemia, hyperkalaemia and neutrophilia to be associated with LoS >14 days. This may assist with healthcare systems planning.

Objective: This case highlights the clinical consequences of elastin (ELN) arteriopathy, which affects the supravalvular aorta, the branches of the arch and pulmonary arterial branches. We present a seven-year-old male patient with complex, inherited, non-syndromic supravalvular aortic stenosis (SVAS) who underwent numerous surgical procedures since birth. We highlight his most recent hybrid operation, which included a stent-in-stent endovascular strategy to treat significant recurrent stenosis of the aortic arch. Method: This hybrid reconstruction included carotid and subclavian extra-anatomical bypasses, followed by an aortic arch stent-graft-in-stent-graft (SG-SG) insertion where a stainless-steel stent-graft was placed as an inlay within another nitinol stent-graft. Thereafter, a 16mm high-pressure balloon was used to adequately expand both stent-grafts. Results: Our findings revealed that the SG-SG technique of the arch improved and alleviated the patient's hypertension and lower claudication symptoms. Although 1-year follow up scans revealed that both stent grafts were patent, progressive arteriopathy affected other aortic branch vessels. Conclusion: Aortic arch stent graft insertion may be considered as an alternative to open surgery in aortic restenosis. A bypass procedure involving extra-anatomical right carotid-to-left carotid and left carotid-to-left subclavian may be considered to facilitate stent graft insertion. Endovascular interventionalists need to be aware of the progressive consequences of elastin arteriopathy.

Purpose of review The purpose of this review is to present and analyse recent literature on the patterns, trends, and developments of ethical considerations concerning xenotransplantation by appraising normative aspects within a coherent framework. Recent findings Developments within xenotransplantation may soon allow for pig-to-human xenotransplantation to take place. Ethical analysis of xenotransplantation commonly follows an anthropocentric cost-benefit analysis, which may imprecisely measure costs. Xenotransplantation should not merely be approached from an anthropocentric perspective. Rather, the potential risks presented to human and nonhuman donors, recipients, and third parties should all be thoroughly considered. The range of feasible alternatives to xenotransplantation to increase organ supply should be examined before resorting to xenotransplantation because of the moral distinction between imposing certain risks on others before, or after, alternative solutions have been exhausted.

Interest in animal-to-human transplantation has significantly increased owing to the limits placed on successful human-to-human organ transplantation by chronic scarcities of donated human organs, and transplant rejection. Extracting and transplanting organs from pigs is a promising solution to the current, increasing, global crisis of human organ scarcity, and would provide a vast supply of organs, which could be obtained quickly and selectively. Although potential harms of pig-to-human xenotransplantation exist, such as cross-species infection, transplant rejection, psychological harm, risks of wear and tear and threats to altruism, these harms may be mitigated through appropriate strategies. We address the objection that xenotransplantation is unnatural. We respond that the sense in which xenotransplantation is unnatural is unclear, and moreover, does not demonstrate that it is wrong. Overall, we claim that the benefits of pig-to-human xenotransplantation are likely to outweigh the harms, if appropriate steps are taken. Genetically modified pigs offer hope for a vast supply of organs for transplant in patients, along with a potentially avoidable risk of transplant rejection and disease transmission.