Informed consent (IC), a fundamental principle of ethics in medical research, is recognized as a vital component of HIV vaccine trials. There are different notions of IC, some legally based and others based on ethics. It is argued that, though legal indemnity is necessary, vaccine trials should be founded on fully ethical considerations. Various contentious aspects of IC are examined, especially the problem of social desirability and of adequate comprehension. The need for sensitivity to cultural norms in implementing IC procedures is critically reviewed, and some of the potential conflict between ethos and ethics is considered. The transmission of information is examined as a particular aspect of IC in HIV vaccine trials.

In this review we describe the ethical issues central to local and international debates about HIV vaccine trials. These issues include the physiological and psycho-social risks of trial participation, the preventative interventions to be provided to participants, access to treatment for participants who seroconvert, access to an effective vaccine after the trial, the role of placebo-controlled trials, and obtaining informed consent.

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.

Various evaluative studies have been carried out to obtain the views of multiple stakeholders involved in community-based biomedical research projects. However, rarely have the viewpoints of postgraduate students and junior faculty involved in such initiatives been explored. Thus, the aim of this study was to examine the views of postgraduate students and junior faculty at a rural-based university on the effect of a longitudinal biomedical research project on their acquisition of relevant skills. In-depth interviews and a focus group discussion were conducted. The thematic content analysis technique was used to analyse the qualitative data. Both postgraduate student and junior faculty groups indicated that they had acquired considerable research skills and knowledge; gained experience; were exposed to practical reality; and strengthened their interpersonal skills and general personal development. However, some respondents highlighted that they still believed that training in data analysis and exposure to new laboratory techniques would have strengthened their individual capabilities to conduct cutting-edge research. The results of this study highlight the need for community-based biomedical researchers to equip members of their teams with the skills and knowledge that will help them achieve their academic and career goals.

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.

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.

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.

Considered in isolation, the ethical and societal challenges posed by genomics and artificial intelligence (AI) are profound and include issues relating to autonomy, privacy, equality, bias, discrimination, and the abuse of power, amongst others. When these two technologies are combined, the ethical, legal and societal issues increase substantially, become much more complex, and can be scaled enormously, which increases the impact. Adding to these complexities, both genomics and AI-enabled technologies are rife with scientific and technological uncertainties, which makes the regulation of these technologies not only challenging in itself, but also creates legal uncertainties. In science, the precautionary principle has been used globally to govern uncertainty, with the specific aim to prevent irreversible harm to human beings. The regulation of uncertainties in AI-enabled technologies is based on risk as set out in the AI Regulation that was recently proposed by the European Commission. However, when genomics and artificial intelligence are combined, not only do uncertainties double, but the current regulation of such uncertainties towards the safe use thereof for humans seems contradictory, considering the different approaches followed by science and technology in this regard. In this article, I explore the regulation of both scientific and technological uncertainties and argue that the application of the precautionary principle in the context of human genomics and AI seems to be the most effective way to regulate the uncertainties brought about by the combination of these two technologies.

The movements of humans have a significant impact on population health. While studies of such movements are as old as public health itself, the COVID-19 pandemic has raised the profile of mobility research using digital technologies to track transmission routes and calculate the effects of health policies, such as lockdowns. In sub-Saharan Africa, the high prevalence of cell phone and smartphone use is a source of potentially valuable mobility data for public health purposes. Researchers can access call data records, passively collected in real time from millions of clients by cell phone companies, and associate these records with other data sets to generate insights, make predictions or draw possible policy implications. The use of mobility data from this source could have a range of significant benefits for society, from better control of infectious diseases, improved city planning, more efficient transportation systems and the optimisation of health resources. We discuss key ethical issues raised by public health studies using mobility data from cell phones in sub-Saharan Africa and identify six key ethical challenge areas: autonomy, including consent and individual or group privacy; bias and representativeness; community awareness, engagement and trust; function creep and accountability; stakeholder relationships and power dynamics; and the translation of mobility analyses into health policy. We emphasise the ethical importance of narrowing knowledge gaps between researchers, policymakers and the general public. Given that individuals do not really provide valid consent for the research use of phone data tracking their movements, community understanding and input will be crucial to the maintenance of public trust.

The growth in data science research in sub-Saharan Africa raises important ethical questions for the collection and use of 'big data' in this context, with particularly disparate implications for the most vulnerable and marginalised populations. While enhanced public involvement may be able to mitigate some of these risks, data science presents some unique barriers to community engagement efforts, including limited data literacy, lack of transparency in data collection and use, and little opportunity to 'opt out' from participation. The participatory approach of crowdsourcing offers a promising solution to address the critical need for community engagement. Crowdsourcing involves inviting a group to contribute solutions to a problem, and then publicly sharing the results for implementation. By crowdsourcing stakeholder ideas for innovative ways to enhance public involvement in data science research, the Research for Ethical Data Science in Southern Africa (REDSSA) project is leading the efforts to close the community engagement gap. Promising strategies that emerge from these efforts will ultimately help to shape more ethical and equitable data science research in Africa as this field continues to grow.

'Long COVID' is the term used to describe the phenomenon in which patients who have survived a COVID-19 infection continue to experience prolonged SARS-CoV-2 symptoms. Millions of people across the globe are affected by Long COVID. Solving the Long COVID conundrum will require drawing upon the lessons of the COVID-19 pandemic, during which thousands of experts across diverse disciplines such as epidemiology, genomics, medicine, data science, and computer science collaborated, sharing data and pooling resources to attack the problem from multiple angles. Thus far, there has been no global consensus on the definition, diagnosis, and most effective treatment of Long COVID. In this work, we examine the possible applications of data sharing and data science in general with a view to, ultimately, understand Long COVID in greater detail and hasten relief for the millions of people experiencing it. We examine the literature and investigate the current state, challenges, and opportunities of data sharing in Long COVID research.