C. Staunton, R. Adams, M. Botes, J. D. Vries, M. Labuschaigne, G. Loots, S. Mahomed, N. N. Loideáin, A. Olckers, M. Pepper, A. Pope, Michéle Ramsay
{"title":"Enabling the use of health data for research: Developing a POPIA code of conduct for research in South Africa","authors":"C. Staunton, R. Adams, M. Botes, J. D. Vries, M. Labuschaigne, G. Loots, S. Mahomed, N. N. Loideáin, A. Olckers, M. Pepper, A. Pope, Michéle Ramsay","doi":"10.7196/SAJBL.2021.V14I1.00740","DOIUrl":"https://doi.org/10.7196/SAJBL.2021.V14I1.00740","url":null,"abstract":"Globally, there has been a move toward ‘open science’ that includes the sharing of health data for research. The importance of data sharing for research is generally acknowledged, but this must only be done with legal and ethical procedures and protections in place. The use and sharing of health data for research in South Africa has changed with the coming into force of the Protection of Personal Information Act (POPIA). POPIA should ensure greater transparency and accountability in the use of personal information. POPIA, however, adopts a principle-based approach to the regulation of personal information, and there is a lack of clarity and uncertainty in the application of some of these principles to the use of health data for research. POPIA provides for sector-specific responses through the development of codes of conduct. In this article, we discuss the need for a code of conduct for health research, and an approach that could be adopted in its development.","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":"14 1","pages":"33"},"PeriodicalIF":0.9,"publicationDate":"2021-04-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41654841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Ivermectin and the rule of law","authors":"D. Thaldar","doi":"10.7196/SAJBL.2021.V14I2.763","DOIUrl":"https://doi.org/10.7196/SAJBL.2021.V14I2.763","url":null,"abstract":"The ivermectin saga has taken on a new dimension: respect for the rule of law by the state. The rule of law is important, as it is a cornerstone of our democratic Constitutional order. The South African Health Products Regulatory Authority (SAHPRA) has a statutory mandate to regulate medicines and related substances, but it also has a constitutional duty to obey the law. This duty includes obeying court orders. However, SAHPRA appears to have contravened the consent order handed down by the Pretoria High Court on 2 February 2021, and therefore undermined the rule of law. This situation is untenable in our democratic Constitutional order.","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":"14 1","pages":""},"PeriodicalIF":0.9,"publicationDate":"2021-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41585418","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Factors influencing truth-telling by healthcare providers to terminally ill cancer patients at Ocean Road Cancer Institute in Dar-es-Salaam, Tanzania","authors":"R. Athanas, F. Gasto, S. J. Renatha","doi":"10.7196/SAJBL.2020.V13I2.00706","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00706","url":null,"abstract":"Background: Widely accepted international clinical ethics standards and Tanzania’s national cancer treatments guidelines mandate that healthcare providers give patients the information they want or need in an understandable way. However, adherence to these standards is low particularly in developing countries. In Tanzania, little is known regarding the views and practice of disclosure of diagnosis and prognosis to cancer patients. Objective: In this study, we aimed at examining the factors influencing truth-telling by healthcare providers to terminally ill cancer patients at Ocean Road Cancer Institute (ORCI) in Dar-es-Salaam, Tanzania. Methods: We conducted semi-structured interviews with a purposive sample of healthcare providers (n=13) and terminally ill cancer patients (n=8) in English and Swahili. The interviews were recorded, transcribed verbatim, and translated to English. Results: Study findings show unsatisfactory experience of truth-telling according to international clinical standards. Many healthcare providers emphasized many barriers including: limited communication skills, limited time, a high volume of patients and lack of privacy for communication. Patients’ preferences and readiness to information as well as family collusion were identified as barriers, whereas communalism was identified as facilitator to truth-telling. Conclusion: We identified several barriers and facilitators of truth-telling that may be targeted in order to promote high-quality communication at ORCI. Our results support advocacy for improvements like: training for clinical communication skills and information sharing, space designated to enhance privacy, deliberate efforts to employ enough providers to care for the increasing volume of patients, and need of counselling session with patients and family members prior to clinical information disclosure","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":" ","pages":""},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43372792","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
D. Nzaumvila, L. Mabuza, M. Mogotsi, T. Bongongo, C. Saidiya
{"title":"Factors associated with refusal of hospital treatment at Odi District Hospital, Gauteng Province, South Africa","authors":"D. Nzaumvila, L. Mabuza, M. Mogotsi, T. Bongongo, C. Saidiya","doi":"10.7196/SAJBL.2020.V13I2.00688","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00688","url":null,"abstract":"Abstract Background Medical consultation entails shared doctor-patient decision making. However, in certain cases disagreement between the two parties may lead to patient refusal of hospital treatment (RHT). At Odi District Hospital, patients opted for RHT at the accident and emergency (A&E) department and in wards. The study aimed at determining factors related to the RHT. Methods This was a cross-sectional descriptive study of patient files with a record of RHT from 2017 to 2018. They were traced using the register books and 241 were obtained: A&E (160), obstetrics and gynaecology (2), internal medicine (24), orthopaedics (2), paediatrics (12) and surgery (41). Eighteen files were excluded for incomplete data, 223 remained for analysis. Results More males and the single signed RHT 139 (62.33%) and 152 (68.16%), respectively. RHT was frequent towards the end of the day (p = 0.041), at A&E (59.5%) and as a result of family related matters (31.84%). Other factors related to RHT were the first-time consultation at A&E (p < 0.0001, CI 3.238–11.051), being young (p < 0.0001, CI: 0.1071–0.2451), having co-morbidities (p = 0.0072, CI: 0.4222-0.8647) and a long stay in the wards (p=0.0003, CI 1.382–3.275). Conclusion RHT was more prevalent among males, the young, single and unemployed patients. More RHTs occurred towards the end of the day, at A&E, among those who had long hospital stay, those with family related matters and those with co-morbidities. These identified factors should guide prioritisation in intervention strategies aimed at curbing RHT at Odi District Hospital","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":" ","pages":""},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44986403","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"COVID-19: What should employers do if employed health professionals such as doctors and nurses refuse to treat COVID-19 patients despite being provided with the required personal protective equipment?","authors":"D. Mcquoid-mason","doi":"10.7196/SAJBL.2020.V13I2.00733","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00733","url":null,"abstract":"At some health establishments doctors and nurses employed there are refusing to treat Covid-19 patients - even though they have been provided with the necessary personal protection equipment (PPE). Such conduct would appear to be in breach of the World Medical Association International Code of Medical Ethics , the International Council of Nurses Code of Ethics for Nurses , the Rules of Conduct of the Health Professions Council of South Africa, the South African Nursing Council, some of the provisions of the South African Constitution and of the relevant labour legislation. Guidance is provided to employers on how to deal with the situation based on ethical and legal considerations.","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":"13 1","pages":"87-90"},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44495555","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"COVID-19 vaccines: Equitable access, vaccine hesitancy and the dilemma of emergency use approvals","authors":"A. Dhai","doi":"10.7196/SAJBL.2020.V13I2.00754","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00754","url":null,"abstract":"","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":" ","pages":""},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46562955","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Multidisciplinary specialist treatment teams and abandonment of patients – who is responsible for what?","authors":"D. Mcquoid-mason","doi":"10.7196/SAJBL.2020.V13I2.00704","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00704","url":null,"abstract":"The legal and ethical position of treating specialists whose contractual relationship with a patient has been prematurely terminated by the patient or themselves is discussed. The validity of a mandated parent terminating the treatment of a mentally and legally competent patient by a surgeon member of a specialist team is discussed. After a contractual relationship between a treating specialist and a patient has been prematurely terminated, the specialist concerned still owes a duty of care towards the patient under the law of delict - until a new specialist in the field has been properly briefed by the previous treating specialist to take over the treatment of the patient. Such previous treating specialists may not rely on other specialists in the multidisciplinary treatment team, who are not specialists in the field, to take over the treatment of the patient, or to brief the new specialist on the patient’s condition. In such circumstances, the original treating specialist may be held liable for abandoning their patient. As a general rule, members of a multidisciplinary team may not treat patients outside their speciality – except in emergency situations. In the latter case, however, they cannot rely on emergency as a partial defence, when they themselves have created the emergency. Such members of the team may be cited as joint wrongdoers, if without good cause their conduct contributes to the harm caused by the original treating specialist, after the latter has left the team and abandoned their patient by not ensuring that another specialist in their field had been briefed to take over the patient.","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":" ","pages":""},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47168534","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Sharing human biobank samples and data in exchange for funding in South Africa in international collaborative health research – an ethicolegal analysis","authors":"M. Maseme, S. Mahomed","doi":"10.7196/SAJBL.2020.V13I2.00719","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00719","url":null,"abstract":"The development of biobanks over the years have raised ethico-legal controversies and concerns particularly in the context of cross-border transfers of human material. This is partly as a result of inadequacies in national and international regulations in addressing this crucial aspect of biobanking. It is common practice for South African biobanks and biobank researchers to seek funding from agencies that are independent of the biobank. These agencies often stipulate conditions requiring researchers to grant access to and share biomaterials and data as part of their agreements, in particular, in international collaborative health research. There is a need for the development of a national ethico-legal framework that addresses sharing of biomaterials and data where funding is concerned as a means of protecting against biobank sample exploitation as well as exploitation of researchers and participants.","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":" ","pages":""},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42480836","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"‘Please confirm your HIV-positive status by email to the following government address’: Protection of ‘vulnerable employees’ under COVID-19","authors":"D. Hagemeister, M. Mpeli, B. Shabangu","doi":"10.7196/SAJBL.2020.V13I2.00736","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00736","url":null,"abstract":"COVID-19 has significantly changed the lives of people world-wide. After one of the most stringent lockdowns in the world, South Africa prepares to allow increasing numbers of workers to return to their workplaces. Employees have received several requests to disclose health conditions to their employers that might put them at higher risk for COVID-19, as some of the regulations issued under the ‘state of disaster’ setting by the South African government oblige employers to make special provisions for ‘vulnerable employees’. Despite their benevolent intention, such requests constitute a massive infringement of the employees’ rights, and some of the medical, legal and ethical considerations relevant in this context are discussed. Given the relative scarcity of medical evidence, the constitutional protection of employees’ rights and ethical concerns, a cautious and well-administrated approach within the legally permissible space is necessary.","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":" ","pages":""},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42447126","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Resource allocation during COVID-19: A focus on vulnerable populations","authors":"C. Castelyn, I. Viljoen, A. Dhai, Michael Pepper","doi":"10.7196/SAJBL.2020.V13I2.00730","DOIUrl":"https://doi.org/10.7196/SAJBL.2020.V13I2.00730","url":null,"abstract":"South Africa (SA) is a country of contrasts, with abundant resources, hard-won civil rights and a diverse population. Woven into the fabric of our society is a large divide between its poorest and its wealthiest members. In this article we highlight the vulnerabilities in our society that have been amplified by the COVID-19 crisis. Based on recent projections, it is very likely that the healthcare system will be overwhelmed. We acknowledge the recognition by government and civil society of these vulnerabilities, and note that difficult decisions will need to be made with regard to resource allocation. Our plea, however, is to ensure that human dignity and the principle of distributive justice are maintained, and that when difficult decisions are made, vulnerable people do not suffer disproportionately. Furthermore, it is of great concern that there is no national directive guiding resource allocation, prioritisation and triage decisions in both public and private hospitals. The Health Professions Council of SA should, as a matter of urgency, issue guidance on priority-setting and triage decisions in the context of COVID-19, based on distributive justice principles.","PeriodicalId":43498,"journal":{"name":"South African Journal of Bioethics and Law","volume":" ","pages":""},"PeriodicalIF":0.9,"publicationDate":"2020-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42655891","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}