Research Articles (Centre for Medical Ethics and Law)
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- ItemWhat could "fair allocation" during the Covid-19 crisis possibly mean in Sub-Saharan Africa?(Wiley, 2020-06) Moodley, Keymanthri; Ravez, Laurent; Obasa, Adetayo Emmanuel; Mwinga, Alwyn; Jaoko, Walter; Makindu, Darius; Behets, Frieda; Rennie, StuartThe Covid-19 pandemic has sparked rapid and voluminous production of bioethics commentary in popular media and academic publications. Many of the discussions are new twists on an old theme: how to fairly allocate scarce medical resources, such as ventilators and intensive care unit beds. In this essay, we do not add another allocation scheme to the growing pile, partly out of appreciation that such schemes should be products of inclusive and transparent community engagement and partly out of recognition of their limited utility for physicians working in the field. Instead, we make the more modest claim that context matters when making such decisions and, more specifically, that recommendations from high-income countries about fair allocation during Covid-19 should not be cut and pasted into low-income settings. We offer a few examples of why seemingly universal, well-intentioned ethical recommendations could have adverse consequences if unreflectively applied in sub-Saharan Africa.
- ItemMotivation and behaviour change in Parkrun participants in the Western Cape province, South Africa(MDPI, 2021) Chivunze, Edgar; Burgess, Theresa L.; Carson, Fraser; Buchholtz, KimMass participation events are promoted in South Africa as a positive public health initiative. Parkrun has grown to be one of the most popular. The present study identifies the motives of residents in the Western Cape Province to join parkrun and how their involvement influences future physical activity levels. Participants (N = 1787) completed a survey consisting of demographic history, parkrun participation history, motivations for participation, and physical activity-related behaviour changes associated with parkrun participation. The majority of participants were female (n = 952) and over 50 years of age (median = 50; IQR = 38–59). Along with health-related benefits, the provision of a safe and organised event was reported as a key motive to participate. The social connectedness developed by parkrun encouraged continued participation and promoted uptake of more physical activity. Close to half the participants reported increases in physical activity levels after joining parkrun, which demonstrates the benefit obtained from participation in structured mass participation events. With the large diversity in socioeconomic status in South Africa related to physical activity levels, parkrun provides a protected and engaging environment that provides opportunity for increased physical activity and potentially reducing the burden on the healthcare system.
- ItemProtecting participants in health research : the South African material transfer agreement(South African Medical Association, 2019-04-29) Labuschaigne, M.; Dhai, A.; Mahomed, S.; Behrens, K.; Nienaber, A.; Moodley, Keymanthri; Cleaton-Jones, P.; Olckers, A.; Maepa, N.; Penny, C.The need to transfer human biological materials (HBMs) across national boundaries has become increasingly important in view of increased biobank and commercial activities globally. In light of South Africa (SA)’s history of colonisation and racial discrimination, coupled with well-known instances of exploitation of research participants in the developing world, it is critical that the management of HBMs from and to other jurisdictions is explored and regulated. Material transfer agreements (MTAs) represent an important point of departure in such a process. This article explores the need for a uniform MTA in SA and discusses some aspects of the recently gazetted national MTA, which provides a framework that can serve as a safeguard for cross-border transfer of HBMs in the absence of the National Health Act’s chapter 8 regulations in this regard.
- ItemCOVID‑19 underscores the important role of clinical ethics committees in Africa(BioMed Central, 2021) Moodley, Keymanthri; Kabanda, Siti Mukaumbya; Kleinsmidt, Anita; Obasa, Adetayo EmmanuelBackground: The COVID-19 pandemic has magnified pre-existing challenges in healthcare in Africa. Long-standing health inequities, embedded in the continent over centuries, have been laid bare and have raised complex ethical dilemmas. While there are very few clinical ethics committees (CECs) in Africa, the demand for such services exists and has increased during the COVID-19 pandemic. The views of African healthcare professionals or bioethicists on the role of CECs in Africa have not been explored or documented previously. In this study, we aim to explore such perspectives, as well as the challenges preventing the establishment of CECs in Africa. Methods: Twenty healthcare professionals and bioethicists from Africa participated in this qualitative study that utilized in-depth semi-structured interviews with open-ended questions. Themes were identified through thematic analysis of interviews and open-ended responses. Results: Kenya and South Africa are the only countries on the continent with formal established CECs. The following themes emerged from this qualitative study: (1) Lack of formal CECs and resolution of ethical dilemmas; (2) Role of CECs during COVID-19; (3) Ethical dilemmas presented to CECs pre-COVID-19; (4) Lack of awareness of CECs; (5) Lack of qualified bioethicists or clinical ethicists; (6) Limited resources to establish CECs; (7) Creating interest in CECs and networking. Conclusions: This study illustrates the importance of clinical ethics education among African HCPs and bioethicists, more so now when COVID-19 has posed a host of clinical and ethical challenges to public and private healthcare systems. The challenges and barriers identified will inform the establishment of CECs or clinical ethics consultation services (CESs) in the region. The study results have triggered an idea for the creation of a network of African CECs.
- ItemStakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa(BioMed Central, 2021) Singh, Shenuka; Moodley, KeymanthriBackground: Biobanking provides exciting opportunities for research on stored biospecimens. However, these opportunities to advance medical science are fraught with challenges including ethical and legal dilemmas. This study was undertaken to establish perspectives of South African stakeholders on the ethico-legal dimensions of biobanking. Methods: An in-depth exploratory study was conducted with 25 purposively selected biobankers, clinicians, researchers, postgraduate students in biobanking research, and research ethics committee (REC) members in South Africa. Potential study participants were recruited through known hubs for biobanking in the country, online searches and the snowball sampling technique. A semi-structured face-to-face or Skype interview was arranged. Data was analysed using thematic analysis. Results: The emergent themes included: inconsistency in understanding consent models, disconnect between biobank researchers and biosample donors, inadequate processes to support re-consenting minors, inconsistent governance processes for biobanking research; challenges with sample and data sharing, and suboptimal strategies for benefit sharing and return of results. Biobanking practice in general appeared to be inconsistent and fragmented. While the need for consent in research is explicitly outlined in legislative documents, some respondents were unclear on the type of consent model to apply in biosample collection. They also reported inconsistencies in research participants’ understanding of consent. Furthermore, these respondents’ own understanding of consent and consent models were dependent on where they were positioned in biobanking practice (roles occupied). Respondents were unsure about the process to follow to re-consent child participants once the age of majority (≥ 18 years) was reached. It was not surprising that consent was identified as one of the major ethical challenges in biobanking practice. In certain settings, some respondents reported suboptimal governance processes for sample collection. Participants were generally unsure about how to operationalise benefit sharing and how to approach the idea of returning results to research participants and biobank donors. Conclusion: The study findings indicated inconsistencies in stakeholder understanding of ethico-legal considerations related to biobanking in South Africa. A need for ongoing ethics capacity development among stakeholders was identified. Improving understanding of the ethics of biobanking could be facilitated by acknowledging the disconnect created by biosamples in the relationship between biobank researchers and donors.