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This special issue of the South African Journal of Science on 'Big data and AI in health sciences research in subSaharan Africa' comes from within a large-scale initiative, sponsored by the US National Institutes of Health, to promote research use of 'big data' for health promotion in Africa. As stated on its website (https://dsi-africa.org), the Data Science for Health Discovery and Innovation in Africa (DS-I Africa) Initiative aims to leverage data science technologies to transform biomedical and behavioural research and develop solutions that would lead to improved health for individuals and populations. Started in 2021, DS-I Africa has the ambitious goals of creating pan-African scientific networks; developing data science centres of excellence; creating new data collection and analytic systems, applications and tools; facilitating data resource access to the global scientific community; and advancing policies in Africa related to ethical issues raised by data science. A notable structural feature of DS-I Africa is the intentional pairing of specific scientific projects (or 'data hubs') with projects focusing on the ethical, legal and social implications (or ELSI) of data science. While this embedding of ELSI projects within large scientific initiatives in Africa is by no means new - it was also a feature of the H3Africa initiative (https://h3africa.org) - it does raise some complex questions about the relationships between social science, ethics, law and the scientific pursuit of knowledge through digital technologies in the context of global, regional and domestic inequities. Africa is, albeit unevenly in some regions, undergoing an accelerated process of data digitisation. Increased access to and use of the Internet, personal computers and mobile devices in Africa, as well as advances in data storage and transfer capacity, means that individuals, communities and environments are becoming more 'visible' to researchers, and with this new visibility comes the potential for improved understanding and more effective health interventions. In principle, this digital (r)evolution should be warmly welcomed by adherents to evidence-based medicine and public health. For decades, there have been complaints about a 'data vacuum' in Africa, which has hampered efforts to provide effective clinical care, conduct rigorous scientific research, strengthen fragile health systems and tackle emerging public health threats. The pendulum, it seems, is starting to move in the opposite direction, with massive volumes of health-related data in sub-Saharan Africa being collected, analysed, stored, shared and utilised by numerous stakeholders. But while scarcity of data constituted a problem, so too does an abundance.

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.

Background The COVID-19 pandemic presents significant challenges to research ethics committees (RECs) in balancing urgency of review of COVID-19 research with careful consideration of risks and benefits. In the African context, RECs are further challenged by historical mistrust of research and potential impacts on COVID-19 related research participation, as well as the need to facilitate equitable access to effective treatments or vaccines for COVID-19. In South Africa, an absent National Health Research Ethics Council (NHREC) also left RECs without national guidance for a significant duration of the COVID-19 pandemic. We conducted a qualitative descriptive study that explored the perspectives and experiences of RECs regarding the ethical challenges of COVID-19 research in South Africa. Methods We conducted in-depth interviews with 21 REC chairpersons or members from seven RECs at large academic health institutions across South Africa that were actively involved in the review of COVID-19 related research from January to April 2021. In-depth interviews were conducted remotely via Zoom. Interviews (60–125 min) were conducted in English using an in-depth interview guide, until data saturation was achieved. Audio-recordings were transcribed verbatim and field notes were converted into data documents. Line-by-line coding of transcripts was performed, and data were organised into themes and sub-themes. An inductive approach to thematic analysis was used to analyse data. Results Five main themes were identified, namely: rapidly evolving research ethics landscape, extreme vulnerability of research participants, unique challenges to informed consent, challenges to community engagement during COVID-19, and overlapping research ethics and public health equity issues. Sub-themes were identified for each main theme. Conclusions Numerous, significant ethical complexities and challenges were identified by South African REC members in the review of COVID-19 related research. While RECs are resilient and adaptable, reviewer and REC member fatigue were major concerns. The numerous ethical issues identified also highlight the need for research ethics teaching and training, especially in informed consent, as well as the urgent requirement for the development of national guidelines for research ethics during public health emergencies. Further, comparative analysis between different countries is needed to develop the discourse around African RECs and COVID-19 research ethics issues.

Background HIV testing programs in the United States aim to reach ethnic minority populations who experience high incidence of HIV, yet 40% of African Americans have never been tested for HIV. The objective of this study is to identify community-based strategies to increase testing among African Americans in both urban and rural areas. Methods This study conducted focus group discussions (FGDs) informed by community-based participatory research principles to examine African American’s concerns and ideas around HIV testing and HIV self-testing. Participants included highly affected (i.e., PLWH, MSM, PWID, low-income, teens and young adults) populations from African American communities in North Carolina, aged 15 years and older. We digitally transcribed and analyzed qualitative data using MAXQDA and axial coding to identify emergent themes. Results Fifty-two men and women between 15 to 60 years old living in urban (n=41) and rural (n=11) areas of North Carolina participated in focus group discussions. HIV testing barriers differed by HIV testing setting: facility-based, community-based, and HIV self-testing. In community-based settings, barriers included confidentiality concerns. In facility-based settings (e.g., clinics), barriers included negative treatment by healthcare workers. With HIV self-testing, barriers included improper use of self-testing kits and lack of post-test support. HIV testing facilitators included partnering with community leaders, decentralizing testing beyond facility-based sites, and protecting confidentiality. Conclusions Findings suggest that HIV testing concerns among African Americans vary by HIV testing setting. African Americans may be willing to test for HIV at community events in public locations if client confidentiality is preserved and use HIV self-testing kits in private if post-test social support and services are provided. These community-identified facilitators may improve African American testing rates and uptake of HIV self-testing kits.

Background Current advances in biomedical research have introduced new ethical challenges in obtaining informed consent in low and middle-income settings. For example, there are controversies about the use of broad consent in the collection of biological samples for use in future biomedical research. However, few studies have explored preferred informed consent models for future use of biological samples in Malawi and South Africa. Therefore, we conducted an empirical study to understand preferred consent models among key stakeholders in biomedical studies that involve collection of biological samples in Malawi and South Africa. The main objective of the study was to explore views of key stakeholders on current policies on informed consent in Malawi and South Africa. Methods This was a qualitative study involving in-depth interviews and focus group discussions. Thirty-four in-depth interviews and 6 focus group discussions were conducted with REC members, Funders, Policymakers, CAB members and Research Participants in Malawi and South Africa to gather their views on models of informed consent. The study was conducted in Cape Town, South Africa, and Blantyre and Lilongwe in Malawi. Results Most key stakeholders preferred broad consent and tiered consent to specific consent. Some participants expressed a strong preference for specific consent to other models of informed consent in biomedical research. Few participants did not have any preference for a consent model, opting for any consent model which provides adequate information about the proposed research and what their national consent regulations require. Finally, very few participants preferred blanket consent to other informed consent models. Conclusions This study aimed to help fill the gap in the scientific literature on key stakeholder views on consent models for future use of biological samples in Malawi and South Africa. The findings of the study have provided some evidence that may support policies on permissible consent models for future use of biological samples in sub-Saharan Africa considering the differences in informed consent regulations and guidelines. Finally, the findings can inform ongoing discussions on permissible consent models to be used for future use of biological samples.

Public voices have largely been absent from the discussions about open access publishing in medical research. Yet the public have a strong interest in ensuring open access of medical research findings because of their roles as funders, advocates, research participants, and patients. By limiting access to research outputs, the current publishing system makes it more difficult for research to be held accountable to the public. Paywalls undermine the work of public advocacy, which requires open access in order to lobby for policy changes and research funding. Research participants generously give their time and energy to research studies with the assumption that the results will be broadly disseminated. Finally, members of the public have a stake in open access publishing as a resource for health information and decision-making. This commentary explores these crucial roles of the public in order to develop a public rationale for open access medical research. We outline a critique of the current academic publishing ecosystem, re-focus the open access debate from a public perspective, and respond to some of the arguments against public open access. Although open access to medical research is not a panacea, removing paywalls and other barriers to public access is essential. The public are critical stakeholders of medical research data.

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.

Biomedical research towards an HIV cure is advancing in the United States and elsewhere, yet little is known about perceptions of risks and benefits among potential study participants and other stakeholders. We conducted a qualitative study to explore perceived risks and benefits of investigational HIV cure research among people living with HIV (PLWHIV), biomedical HIV cure researchers, policy-makers and bioethicists. We conducted a qualitative research study using in-depth interviews with a purposive sample of PLWHIV, biomedical HIV cure researchers, policy-makers and bioethicists in 2015-2016. We analysed interview transcripts using thematic analysis anchored in grounded theory. We conducted and analyzed 36 key informant interviews. Qualitative analysis revealed four main findings. 1) Potential HIV cure study volunteers noted needing more information and education about the potential risks of HIV cure research. 2) Biomedical HIV cure researchers, policy-makers and bioethicists showed less awareness of social and financial risks of HIV cure research than PLWHIV. 3) Most respondents across the different categories of informants identified some risks that were too great to be acceptable in HIV cure research, although a subset of PLWHIV did not place an upper limit on acceptable risk. 4) PLWHIV showed a better awareness of potential psychological benefits of participating in HIV cure research than other groups of stakeholders. Our research suggests that PLWHIV have a variable understanding of the individual risks, sometimes substantial, associated with participating in biomedical HIV cure research studies. Community engagement and increased research literacy may help improve community understanding. Intensive informed consent procedures will be necessary for ethical study implementation. The current state of HIV cure research offers greater potential benefits to society than to participants. There is likely to be disagreement among regulators, researchers, clinicians, and potential participants about what constitutes acceptable risk for HIV cure studies.

Increasingly, researchers seek to engage communities, patients, and stakeholders as partners in the process and products of health research. However, there is no existing stakeholder-driven ethical framework for such engaged scholarship. We employed an iterative, stakeholder-engaged method to develop a data-driven framework for the ethical review and conduct of engaged scholarship. We used consensus development conference methods and a modified Delphi survey to engage 240 community members, ethicists, and academic researchers. This multi-staged process produced a framework with 4 domains: vision of equitable and just research, relationship dynamics, community-informed risk/benefits assessment, and accountability. Within the framework, 4 cross-cutting considerations and 15 statements explicate the stakeholders' priorities for the ethical review and conduct of engaged scholarship. Though the findings are promising, the study is limited in that it focuses on stakeholder perspectives, but does not actually evaluate or apply the findings in the field. The stakeholder-engaged framework provides a platform for further articulation of ethical practices and policy for engaged scholarship.

Voluntary medical male circumcision (VMMC) provides significant reductions in the risk of female-to-male HIV transmission. Since 2007, VMMC has been a key component of the United States President's Emergency Plan for AIDS Relief's (PEPFAR) strategy to mitigate the HIV epidemic in countries with high HIV prevalence and low circumcision rates. To ensure intended effects, PEPFAR sets ambitious annual circumcision targets and provides funding to implementation partners to deliver local VMMC services. In Kenya to date, 1.9 million males have been circumcised; in 2017, 60% of circumcisions were among 10-14-year-olds. We conducted a qualitative field study to learn more about VMMC program implementation in Kenya. The study setting was a region in Kenya with high HIV prevalence and low male circumcision rates. From March 2017 through April 2018, we carried out in-depth interviews with 29 VMMC stakeholders, including \"mobilizers\", HIV counselors, clinical providers, schoolteachers, and policy professionals. Additionally, we undertook observation sessions at 14 VMMC clinics while services were provided and observed mobilization activities at 13 community venues including, two schools, four public marketplaces, two fishing villages, and five inland villages. Analysis of interview transcripts and observation field notes revealed multiple unintended consequences linked to the pursuit of targets. Ebbs and flows in the availability of school-age youths together with the drive to meet targets may result in increased burdens on clinics, long waits for care, potentially misleading mobilization practices, and deviations from the standard of care. Our findings indicate shortcomings in the quality of procedures in VMMC programs in a low-resource setting, and more importantly, that the pursuit of ambitious public health targets may lead to compromised service delivery and protocol adherence. There is a need to develop improved or alternative systems to balance the goal of increasing service uptake with the responsible conduct of VMMC.