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The Brave New World: Should we tread down the path to human germline editing? 美丽新世界:我们应该踏上人类生殖细胞编辑的道路吗?
IF 0.9 Q2 Social Sciences Pub Date : 2021-04-19 DOI: 10.7196/SAJBL.2021.V14I1.00713
S. Soni
Gene-editing tools such as the CRISPR-Cas9 system create an opportunity for individuals to have their DNA edited for specific purposes. Somatic cell editing targets specific cells in an individual, and is aimed at providing a therapeutic mechanism to correct a genetic disease or condition. Germline editing refers to the editing of the DNA of embryos or gametes, which creates edits that are heritable. Following the announcement in 2018 that the Chinese scientist He Jiankui had proceeded to gene-edit human embryos, a moratorium on germline editing was quickly proposed. While an objective of the moratorium was to prevent clinical application of germline editing, it also served as an opportunity to engage in global debate on the issues inherent in gene editing. Heritable editing has become an ethically controversial topic in bioethics, and this article undertakes to provide a primer in the existing national and international legal framework for gene editing, as well as description of the prominent current views of heritable germline editing.
CRISPR-Cas9系统等基因编辑工具为个人创造了一个为特定目的编辑DNA的机会。体细胞编辑针对个体中的特定细胞,旨在提供一种治疗机制来纠正遗传疾病或状况。种系编辑是指对胚胎或配子的DNA进行编辑,从而产生可遗传的编辑。2018年,中国科学家贺建奎宣布对人类胚胎进行基因编辑后,很快就提出了暂停种系编辑的建议。虽然暂停的目的是防止种系编辑的临床应用,但它也为参与关于基因编辑固有问题的全球辩论提供了机会。遗传编辑已成为生物伦理学中一个在伦理上有争议的话题,本文致力于为现有的国家和国际基因编辑法律框架提供一本入门读物,并描述当前对遗传种系编辑的突出观点。
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引用次数: 1
Enabling the use of health data for research: Developing a POPIA code of conduct for research in South Africa 使健康数据能够用于研究:为南非的研究制定持久性有机污染物信息倡议行为守则
IF 0.9 Q2 Social Sciences Pub Date : 2021-04-19 DOI: 10.7196/SAJBL.2021.V14I1.00740
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
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.
在全球范围内,已经出现了一种“开放科学”的趋势,其中包括共享用于研究的卫生数据。数据共享对研究的重要性得到普遍承认,但这必须在法律和道德程序和保护措施到位的情况下完成。随着《个人信息保护法》(POPIA)的生效,南非为研究使用和共享健康数据的情况发生了变化。POPIA应确保在使用个人信息方面提高透明度和问责制。然而,《人口信息法》对个人信息的管理采取了一种基于原则的办法,在将其中一些原则应用于使用健康数据进行研究方面缺乏明确性和不确定性。POPIA通过制定行为守则规定了针对特定部门的对策。在本文中,我们讨论了制定卫生研究行为准则的必要性,以及在制定过程中可以采用的方法。
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引用次数: 3
Ivermectin and the rule of law 伊维菌素与法治
IF 0.9 Q2 Social Sciences Pub Date : 2021-03-16 DOI: 10.7196/SAJBL.2021.V14I2.763
D. Thaldar
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.
伊维菌素事件有了一个新的层面:国家对法治的尊重。法治很重要,因为它是我们民主宪政秩序的基石。南非卫生产品监管局(SAHPRA)有监管药品和相关物质的法定授权,但它也有遵守法律的宪法义务。这项义务包括服从法庭命令。然而,SAHPRA似乎违反了比勒陀利亚高等法院2021年2月2日发布的同意令,因此破坏了法治。这种情况在我们的民主宪法秩序中是站不住脚的。
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引用次数: 1
Factors associated with refusal of hospital treatment at Odi District Hospital, Gauteng Province, South Africa 南非豪登省Odi区医院拒绝住院治疗的相关因素
IF 0.9 Q2 Social Sciences Pub Date : 2020-12-15 DOI: 10.7196/SAJBL.2020.V13I2.00688
D. Nzaumvila, L. Mabuza, M. Mogotsi, T. Bongongo, C. Saidiya
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
摘要背景医学咨询需要医患共同决策。然而,在某些情况下,双方之间的分歧可能会导致患者拒绝住院治疗(RHT)。在奥迪地区医院,患者在急诊科和病房选择了RHT。该研究旨在确定与RHT相关的因素。方法这是一项对2017年至2018年RHT患者档案的横断面描述性研究。使用登记簿对他们进行了追踪,共获得241人:急诊科(160人)、妇产科(2人)、内科(24人)、骨科(2人、儿科(12人)和外科(41人)。18份文件因数据不完整而被排除在外,223份仍有待分析。结果男性和单征RHT分别为139例(62.33%)和152例(68.16%)。RHT在一天结束时很常见(p=0.041),在A&E(59.5%)和由于家庭相关问题(31.84%)。与RHT相关的其他因素是在A&E首次就诊(p<0.0001,CI 3.238–11.051)、年轻(p<0.001,CI 0.1071–0.2451),合并症(p=0.0072,CI:0.4222-0.8647)和长期住院(p=0.0003,CI 1.382-3.275)。结论RHT在男性、年轻人、单身和失业患者中更为普遍。当天快结束时,在A&E,在那些长期住院的人、那些有家庭相关问题的人和那些有合并症的人中,发生了更多的RHT。这些确定的因素应指导奥迪地区医院旨在遏制RHT的干预策略的优先顺序
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引用次数: 0
Factors influencing truth-telling by healthcare providers to terminally ill cancer patients at Ocean Road Cancer Institute in Dar-es-Salaam, Tanzania 坦桑尼亚达累斯萨拉姆海洋路癌症研究所医疗保健提供者向癌症绝症患者进行真相推销的影响因素
IF 0.9 Q2 Social Sciences Pub Date : 2020-12-15 DOI: 10.7196/SAJBL.2020.V13I2.00706
R. Athanas, F. Gasto, S. J. Renatha
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
背景:广泛接受的国际临床伦理标准和坦桑尼亚国家癌症治疗指南要求医疗保健提供者以可理解的方式向患者提供他们想要或需要的信息。然而,遵守这些标准的程度很低,特别是在发展中国家。在坦桑尼亚,关于向癌症患者披露诊断和预后的观点和实践知之甚少。目的:在这项研究中,我们旨在检验坦桑尼亚达累斯萨拉姆癌症海洋路研究所(ORCI)医疗保健提供者对癌症绝症患者进行真相推销的影响因素。方法:我们用英语和斯瓦希里语对医疗保健提供者(n=13)和绝症癌症患者(n=8)进行了半结构化访谈。采访被记录下来,逐字逐句转录,并翻译成英文。结果:研究结果显示,根据国际临床标准,讲真话的体验并不令人满意。许多医疗保健提供者强调了许多障碍,包括:沟通技能有限、时间有限、患者人数多以及缺乏沟通隐私。患者的偏好和对信息的准备以及家庭勾结被认为是障碍,而社群主义被认为是讲真话的促进者。结论:为了促进ORCI的高质量沟通,我们确定了讲真话的几个障碍和推动者。我们的研究结果支持了对改进的倡导,如:临床沟通技能和信息共享的培训,指定用于增强隐私的空间,有意雇佣足够的提供者来照顾不断增加的患者数量,以及在临床信息披露之前需要与患者和家人进行咨询
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引用次数: 1
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? COVID-19:如果受雇的卫生专业人员(如医生和护士)尽管提供了所需的个人防护装备,但仍拒绝治疗COVID-19患者,雇主应怎么办?
IF 0.9 Q2 Social Sciences Pub Date : 2020-12-15 DOI: 10.7196/SAJBL.2020.V13I2.00733
D. Mcquoid-mason
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.
在一些卫生机构,那里雇佣的医生和护士拒绝治疗新冠肺炎患者,尽管他们已经获得了必要的个人防护设备(PPE)。这种行为似乎违反了世界医学协会《国际医学道德守则》、国际护士理事会《护士道德守则》和南非卫生专业理事会《行为规则》、南非护理理事会、《南非宪法》的一些规定以及相关劳动法。根据道德和法律考虑,向雇主提供如何处理这种情况的指导。
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引用次数: 1
‘Please confirm your HIV-positive status by email to the following government address’: Protection of ‘vulnerable employees’ under COVID-19 “请通过电子邮件向以下政府地址确认您的艾滋病毒阳性状态”:COVID-19下保护“弱势员工”
IF 0.9 Q2 Social Sciences Pub Date : 2020-12-15 DOI: 10.7196/SAJBL.2020.V13I2.00736
D. Hagemeister, M. Mpeli, B. Shabangu
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.
新冠肺炎极大地改变了世界各地人民的生活。在经历了世界上最严格的封锁之后,南非准备允许越来越多的工人返回工作场所。员工收到了几项向雇主披露健康状况的请求,这可能会使他们面临更高的新冠肺炎风险,因为南非政府在“灾难状态”下发布的一些规定要求雇主为“弱势员工”做出特殊规定。尽管他们的意图是善意的,但这些要求构成了对员工权利的大规模侵犯,并讨论了与此相关的一些医疗、法律和道德考虑。鉴于医疗证据相对稀缺,宪法对员工权利和道德问题的保护,有必要在法律允许的范围内采取谨慎和管理良好的方法。
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引用次数: 1
Sharing human biobank samples and data in exchange for funding in South Africa in international collaborative health research – an ethicolegal analysis 共享人类生物库样本和数据,以换取南非在国际合作健康研究中的资金——伦理分析
IF 0.9 Q2 Social Sciences Pub Date : 2020-12-15 DOI: 10.7196/SAJBL.2020.V13I2.00719
M. Maseme, S. Mahomed
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.
多年来生物库的发展引发了伦理法律争议和担忧,尤其是在人类物质跨境转移的背景下。这在一定程度上是由于国家和国际法规在解决生物库这一关键方面的不足。南非生物库和生物库研究人员通常向独立于生物库的机构寻求资金。这些机构经常规定条件,要求研究人员允许访问和共享生物材料和数据,作为其协议的一部分,特别是在国际合作健康研究中。有必要制定一个国家伦理法律框架,在涉及资金的情况下,解决生物材料和数据的共享问题,以防止生物库样本被利用以及研究人员和参与者被利用。
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引用次数: 1
COVID-19 vaccines: Equitable access, vaccine hesitancy and the dilemma of emergency use approvals 新冠肺炎疫苗:公平获取、疫苗犹豫和紧急使用批准的困境
IF 0.9 Q2 Social Sciences Pub Date : 2020-12-15 DOI: 10.7196/SAJBL.2020.V13I2.00754
A. Dhai
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引用次数: 2
Multidisciplinary specialist treatment teams and abandonment of patients – who is responsible for what? 多学科专家治疗团队和遗弃患者——谁对什么负责?
IF 0.9 Q2 Social Sciences Pub Date : 2020-12-15 DOI: 10.7196/SAJBL.2020.V13I2.00704
D. Mcquoid-mason
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.
讨论了治疗专家的法律和道德立场,这些专家与患者的合同关系已被患者或他们自己提前终止。讨论了强制父母终止由专家团队的外科医生成员对精神和法律合格患者的治疗的有效性。在治疗专家和患者之间的合同关系提前终止后,根据违法行为法,相关专家仍然对患者负有照顾义务,直到前治疗专家向该领域的新专家作出适当的简报,接管患者的治疗。这些以前的治疗专家可能不依赖多学科治疗团队中的其他专家,而这些专家不是该领域的专家,来接管患者的治疗,或向新专家简要介绍患者的病情。在这种情况下,原治疗专家可能会因遗弃患者而承担责任。一般来说,多学科团队的成员不得在其专业之外治疗患者,除非在紧急情况下。然而,在后一种情况下,当他们自己制造了紧急情况时,他们不能将紧急情况作为部分防御。如果在没有正当理由的情况下,他们的行为导致了原治疗专家造成的伤害,那么在原治疗专家离开团队并因未确保其所在领域的另一名专家被告知接管患者而抛弃患者后,团队的这些成员可能会被称为共同作恶者。
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引用次数: 0
期刊
South African Journal of Bioethics and Law
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