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A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research 马来西亚生物银行研究中的知情同意方法和伦理挑战初探
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-11-08 DOI: 10.1007/s41649-022-00229-y
Amnah Azahar, Aimi Nadia Mohd Yusof, Zahir Izuan Azhar

Abstract

Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an in-depth interview with the key informants was conducted in Klang Valley. Based on the interviews, broad consent is the main approach used in obtaining informed consent in biobanking for research in Malaysia and five major ethical challenges were identified. These challenges include the informants’ opinion on the current informed consent approach, understanding participants’ rights, the role of the research ethics committee, biobanking governance in Malaysia, and informants’ knowledge and awareness. In summary, there is a lack of understanding among those involved in biobanking on the ethical, legal, and social aspects of biobanking for research in Malaysia.

摘要自2005年以来,马来西亚建立了几个生物库,以跟上英国和美国等其他国家生物医学研究和生物库开发的进展。尽管马来西亚建立了多个生物库,但人们对生物库研究中的知情同意方法及其伦理挑战知之甚少。本研究旨在确定马来西亚生物库研究中获得知情同意的方法,并探讨其伦理挑战。采用非概率目的性抽样,在巴生谷对关键线人进行了深入访谈。根据访谈,广泛同意是马来西亚生物库研究中获得知情同意的主要方法,并确定了五个主要的伦理挑战。这些挑战包括举报人对当前知情同意方法的意见、了解参与者的权利、研究伦理委员会的作用、马来西亚的生物银行治理以及举报人的知识和意识。总之,参与生物银行研究的人员对马来西亚研究生物银行的伦理、法律和社会方面缺乏了解。
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引用次数: 2
Three Problems with the Impairment Argument 减值论证的三个问题
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-11-07 DOI: 10.1007/s41649-022-00228-z
William Simkulet

In his recent article “Even if the fetus is not a person, abortion is immoral: The Impairment Argument,” Perry Hendricks sets out to sidestep thorny metaphysical questions regarding human fetuses and present a new argument against abortion – if impairing a fetus with fetal alcohol syndrome is immoral, then killing the fetus is immoral. Hendricks takes inspiration from Judith Jarvis Thomson’s defense of abortion – that even if fetuses are persons with a right to life, the right to life is not the right to use others, so it is acceptable to induce abortion. Together with Bruce Blackshaw, Hendricks set out to strengthen the impairment argument by appealing to Don Marquis’s future like ours (FLO) account of the wrongness of killing. Here I argue the impairment argument falls short in three ways. First, Hendricks and Blackshaw fail to assume fetuses aren’t persons, broadly construed. Second, they fail to show that impairing a fetus is immoral. Third, they overlook abortions that (merely) let the fetus die. Finally, I argue Thomson’s defense of abortion preempts the significance of the impairment argument; Thomson seems to show that even if killing a fetus is prima facie immoral, women still have the right to induce abortion.

Perry Hendricks在其最近的文章《即使胎儿不是人,堕胎也是不道德的:损害论》中,试图回避有关人类胎儿的棘手形而上学问题,并提出一个反对堕胎的新论点——如果用胎儿酒精综合征损害胎儿是不道德的,那么杀死胎儿就是不道德的。Hendricks的灵感来自Judith Jarvis Thomson对堕胎的辩护——即使胎儿是有生命权的人,生命权也不是使用他人的权利,因此堕胎是可以接受的。Hendricks和Bruce Blackshaw一起,试图通过呼吁Don Marquis像我们(FLO)一样对杀戮的错误性进行未来描述,来加强损害赔偿的论点。在这里,我认为减值的论点在三个方面都不够。首先,Hendricks和Blackshaw没有假设胎儿不是人。其次,他们没有证明伤害胎儿是不道德的。第三,他们忽视了(仅仅)让胎儿死亡的堕胎。最后,我认为汤姆森对堕胎的辩护优先于损害论点的重要性;汤姆森似乎表明,即使杀死胎儿表面上是不道德的,女性仍然有权堕胎。
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引用次数: 0
COVID-19, Personal Data Protection and Privacy in India 新冠肺炎,印度的个人数据保护和隐私
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-10-27 DOI: 10.1007/s41649-022-00227-0
Mohamad Ayub Dar, Shahnawaz Ahmad Wani

Abstract

The corona pandemic altered many traditional and historical norms of society and law. COVID-19 created a humanitarian crisis in some parts of globe, while pandemic privacy and civil liberties were under threat all over world. To combat the deadly virus, individual liberty and equality were compromised. This paper focuses on how India’s health problem has compromised people’s right to privacy. It will highlight how strict executive policies led to the creation of a massive surveillance system in the name of combating the COVID-19 pandemic, as well as how the absence of any policy or legal framework led to the exclusion of individuals and their families who were suspected of having the virus or caring for those who were infected with the deadly virus. The paper uses case studies and data collected from primary as well as secondary sources. The authors will also point out how the absence of privacy regulation puts millions of citizens’ private information at risk of being compromised or exploited against their will.

新冠疫情改变了许多传统和历史的社会和法律规范。新冠肺炎在全球一些地区造成了人道主义危机,而疫情隐私和公民自由在世界各地都受到威胁。为了对抗这种致命的病毒,个人自由和平等受到了损害。这篇论文关注的是印度的健康问题如何损害了人们的隐私权。它将强调严格的行政政策如何导致以抗击新冠肺炎疫情的名义建立了一个大规模的监测系统,以及缺乏任何政策或法律框架如何导致将怀疑感染病毒或照顾感染致命病毒的个人及其家人排除在外。该论文使用了从主要和次要来源收集的案例研究和数据。作者还将指出,由于缺乏隐私监管,数百万公民的私人信息面临着被泄露或被利用的风险。
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引用次数: 0
The Public Health Response to COVID-19 in Vietnam: Decentralization and Human Rights 越南应对新冠肺炎的公共卫生对策:权力下放与人权
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-10-22 DOI: 10.1007/s41649-022-00226-1
Hai Thanh Doan

Human rights constitute a universal concern in different countries’ responses to COVID-19. Vietnam is internationally praised for its success in containing the pandemic; nevertheless, human rights issues are a key area that needs to be assessed and improved. Little legal and ethical research is available on human rights in Vietnam, particularly in its response to COVID-19, however. In Vietnam, decentralization took place during the pandemic: higher authorities delegated power to lower ones to make and implement public health measures. Unfortunately, many measures made and implemented decentrally caused human rights concerns or breaches. This article aims to study what makes such measures cause human rights concerns or breaches. It argues that several social, legal, and political factors, including an inadequate understanding of human rights, the undefined breadth of discretion, and lack of supervision, are underlying factors for such problematic decentralized measures. Accordingly, this paper proposes two solutions (i) improving the supervision of the decentralization process, and (ii) improving the understanding of human rights. While Vietnam should learn from the international community to improve its measures, lessons and experience from Vietnam can also contribute to a richer dialogue and better protection of human rights globally.

人权是不同国家应对新冠肺炎的普遍关切。越南因成功控制疫情而受到国际赞誉;然而,人权问题是一个需要评估和改进的关键领域。然而,关于越南人权的法律和伦理研究很少,尤其是在应对新冠肺炎方面。在越南,权力下放发生在疫情期间:上级机关将制定和实施公共卫生措施的权力下放给下级机关。不幸的是,制定和实施的许多非中心化措施引起了对人权的关注或侵犯。这篇文章的目的是研究是什么使这些措施引起了对人权的关注或侵犯。它认为,一些社会、法律和政治因素,包括对人权的理解不足、自由裁量权的广度不明确以及缺乏监督,是这种有问题的分散措施的根本因素。因此,本文提出了两个解决方案:(一)加强对权力下放进程的监督;(二)增进对人权的理解。尽管越南应该向国际社会学习,改进其措施,但越南的经验教训也有助于在全球范围内开展更丰富的对话,更好地保护人权。
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引用次数: 1
Challenges in the Teaching–Learning Process of the Newly Implemented Module on Bioethics in the Undergraduate Medical Curriculum in India 印度本科医学课程中新实施的生物伦理学模块在教学过程中面临的挑战
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-10-19 DOI: 10.1007/s41649-022-00225-2
Barna Ganguly, Russell D’Souza, Rui Nunes

The National Medical Commission of India introduced the Competency Based Curriculum in Medical Education for undergraduate medical students in 2019 with a new module named Attitude, Ethics and Communication (AETCOM) across the country. There was a consensus for teaching medical ethics in an integrated way, suggesting dedicated hours in each phase of undergraduate training. The AETCOM module was prepared and circulated as a guide to acquire necessary competency in attitudinal, ethical and communication domains. This study was aimed to explore the perceptions of students and medical teachers and identify the challenges in teaching and learning process of the newly implemented AETCOM module. It was a mixed method designed study with structured questionnaires for students and teachers at various medical schools in India. Based on the quantitative data, in-depth interviews with medical teachers were undertaken. Challenges were perceived by both students and teachers. The students had a mixed perception, facing difficulties in passive learning with scarce resource materials. Challenges identified by teachers were a lack of knowledge and skills required for teaching bioethics, the logistics of managing large numbers of students in the stipulated time frame, interdisciplinary integration—both horizontal and vertical, and assessment program in terms competency-based education. The study draws the attention of all stakeholders for a revision and efforts for further improvement in the teaching and assessment process, and setting a standard model in medical education in India.

2019年,印度国家医学委员会在全国范围内推出了面向医学本科生的基于能力的医学教育课程,并推出了一个名为“态度、道德和沟通”(AETCOM)的新模块。对于以综合方式教授医学伦理学达成了共识,建议在本科生培训的每个阶段都有专门的时间。AETCOM模块是作为获得态度、道德和沟通领域必要能力的指南而编制和分发的。本研究旨在探讨学生和医学教师的看法,并确定新实施的AETCOM模块在教学和学习过程中面临的挑战。这是一项针对印度各医学院学生和教师的混合方法设计的研究,采用结构化问卷。根据定量数据,对医学教师进行了深入访谈。学生和教师都感受到了挑战。学生们的看法不一,在资源匮乏的情况下,他们在被动学习中面临困难。教师们发现的挑战是缺乏教授生物伦理学所需的知识和技能,在规定的时间框架内管理大量学生的后勤工作,横向和纵向的跨学科融合,以及基于能力的教育的评估计划。该研究提请所有利益相关者注意修订和努力进一步改进教学和评估过程,并为印度的医学教育树立标准模式。
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引用次数: 1
Ethical Relativism and Circumstances of Social and Cultural Contingencies on Informed Consent in the Conduct of Research: Clinical Trials in Nigeria 伦理相对主义与研究中知情同意的社会和文化偶然情况:尼日利亚的临床试验
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-10-13 DOI: 10.1007/s41649-022-00223-4
Sola Aluko-Arowolo, Saheed Akinmayọwa Lawal, Isaac A. Adedeji, Stephen Nwaobilor

There have been debates across the globe for a social and culturally sensitive ethics to meditate a catalyst of template for informed consent (IC) in the conduct of social researches and clinical trial. The study adopted ethical relativism theory to explore social and cultural contingencies on IC with descriptive research design and snowball sampling techniques with a pool of 23 participants randomly and purposively selected amongst the stakeholders including researchers. Seven lecturers and 5 medical practitioners from selected universities, 5 clergy members of different genders and denominations with 2 Imams, 1 chief and 2 traditional health practitioners completing the pool. The data were compiled separately with pseudonym to maintain the anonymity of the participants and content analysed thematically to probe awareness, understanding, patriarchy and religious dimensions on IC. The paper argued that ethics and law regulations must be strengthened to leverage on different individual values, norms and social indices. The paper concluded and suggested that researchers can avoid and resolve ethical dilemmas and maintain research regularity when ethical obligations are well understood and strictly adhered to, and to develop the Informed Consent Evaluation Feedback Tool (ICEFbT) with oversight function from Institution Review Board (IRB) in the universities and research institutes before the commencement of research and/or medical procedures.

在进行社会研究和临床试验时,全球范围内一直在争论一种对社会和文化敏感的伦理,以思考知情同意模板(IC)的催化剂。该研究采用伦理相对主义理论,通过描述性研究设计和滚雪球抽样技术,从包括研究人员在内的利益相关者中随机选择23名参与者,探讨IC的社会和文化偶然性。来自选定大学的7名讲师和5名医生、5名不同性别和教派的神职人员、2名伊玛目、1名首席执行官和2名传统卫生从业者组成了该团队。数据是用假名单独汇编的,以保持参与者的匿名性,内容按主题分析,以探究IC的意识、理解、父权制和宗教维度。论文认为,必须加强道德和法律法规,以利用不同的个人价值观、规范和社会指标。论文总结并建议,当充分理解并严格遵守伦理义务时,研究人员可以避免和解决伦理困境,保持研究的规律性,以及在研究和/或医疗程序开始之前,在大学和研究机构开发具有机构审查委员会监督职能的知情同意评估反馈工具。
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引用次数: 3
Assisted Reproductive Technologies: Comparing Abrahamic Monotheistic Religions 辅助生殖技术:亚伯拉罕一神论宗教比较
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-10-06 DOI: 10.1007/s41649-022-00224-3
Md Shaikh Farid, Sumaia Tasnim

The impact of culture and religion on sexual and reproductive health and behavior has been a developing area of study in contemporary time. Therefore, it is crucial for people using reproductive procedures to understand the religious and theological perspectives on issues relating to reproductive health. This paper compares different perspectives of three Abrahamic faiths, i.e., Judaism, Christianity, and Islam on ARTs. Procreation, family formation, and childbirth within the context of marriage have all been advocated by these three major religions of the world. Judaism permits the use of all assisted reproductive technologies when the oocyte and sperm come from the husband and wife, respectively. The different denominations of Christianity have diverse views on reproductive practices. Although the Vatican does not approve of assisted reproduction, Protestant, Anglican, and other religious groups are free to use it. ARTs are acceptable in Sunni Islam, although they can only be carried out if the couples are married. Shia Islam, however, permits third-party donations to married couples under specific restrictions. This comparison reveals that while the three major world religions utilize assisted reproduction in distinct ways, there are also many comparable aspects of each religion.

文化和宗教对性健康和生殖健康及行为的影响一直是当代研究的一个发展领域。因此,对于使用生殖程序的人来说,了解与生殖健康相关问题的宗教和神学观点至关重要。本文比较了犹太教、基督教和伊斯兰教三种亚伯拉罕信仰对ARTs的不同看法。世界上这三大宗教都提倡在婚姻背景下生育、组建家庭和生育。当卵母细胞和精子分别来自丈夫和妻子时,犹太教允许使用所有辅助生殖技术。基督教的不同教派对生殖习俗有不同的看法。尽管梵蒂冈不批准辅助生殖,但新教、圣公会和其他宗教团体可以自由使用。在逊尼派伊斯兰教中,辅助生殖是可以接受的,尽管只有在夫妇结婚的情况下才能进行。然而,什叶派伊斯兰教在特定限制下允许第三方向已婚夫妇捐款。这种比较表明,虽然世界三大宗教以不同的方式利用辅助生殖,但每种宗教也有许多可比较的方面。
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引用次数: 1
The Surrogacy (Regulation) Act, 2021: A Critique 《代孕(监管)法》,2021:一篇评论
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-09-20 DOI: 10.1007/s41649-022-00222-5
Soumya Kashyap, Priyanka Tripathi

In vitro fertilization (IVF) and surrogacy have enabled many to achieve their dreams of parenthood. With a turnover of $500 million, reproductive tourism in India has helped transform the country into a “global baby factory.” However, as the surrogacy industry grew, so did concerns of women’s exploitation, commodification of motherhood, and human rights violations. In an effort to prevent women from being exploited, the Indian government had taken successive administrative measures to regulate surrogacy. The Surrogacy (Regulation) Bill, 2016 and Assisted Reproductive Technologies Bill 2008 were introduced in the Parliament to regulate various aspects of surrogacy arrangements. Yet, it was not until 25 January 2022, that the Surrogacy (Regulation) Act, 2021 went into effect. The Act does, however, leave certain important points unaddressed. The article claims that the legislation’s purposeful exclusion of the LGBTQ population and emphasis on “familial altruism” stinks of inequity and moral conservatism. It also delineates the mechanics of altruistic surrogacy by examining documents that illustrate how the connections between money and morality are framed via the framing of altruism. The article therefore demands that a comprehensive dialogue must be held considering the socio-economic realities of Indian society, or else India risks enacting yet another law that cannot be implemented or that society dislikes.

体外受精(IVF)和代孕使许多人实现了为人父母的梦想。印度的生殖旅游业营业额达5亿美元,帮助该国转变为“全球婴儿工厂”。然而,随着代孕行业的发展,人们对女性剥削、母亲商品化和侵犯人权的担忧也随之而来。为了防止妇女受到剥削,印度政府采取了一系列行政措施来规范代孕行为。议会提出了《2016年代孕(监管)法案》和《2008年辅助生殖技术法案》,以监管代孕安排的各个方面。然而,直到2022年1月25日,《2021年代孕(监管)法》才生效。然而,该法案确实没有解决某些重要问题。文章声称,该立法有目的地排斥LGBTQ人群,并强调“家庭利他主义”,这充满了不公平和道德保守主义的味道。它还通过研究一些文件来描述利他主义代孕的机制,这些文件说明了金钱和道德之间的联系是如何通过利他主义的框架来构建的。因此,该条款要求必须考虑到印度社会的社会经济现实进行全面对话,否则印度可能会颁布另一项无法实施或社会不喜欢的法律。
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引用次数: 3
Applying Two-level Utilitarianism and the Principle of Fairness to Mandatory Vaccination during the COVID-19 Pandemic: the Situation in South Korea 新冠肺炎疫情期间两级效用主义和公平原则在强制接种中的应用——韩国情况
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-09-20 DOI: 10.1007/s41649-022-00221-6
Sungjin Park

In response to the COVID-19 pandemic, Korean society has sought to vaccinate most of its population. Consequently, the Korean government has attempted to make vaccination compulsory by promoting awareness of its benefits. The administration has pushed for mandatory vaccination by claiming that vaccination is more beneficial than harmful, based on a utilitarian view. However, this view is difficult to justify based on the two levels of utilitarianism presented by R. M. Hare. Compulsory vaccination cannot satisfy the universalizability, nor the satisfaction of preference, and exposes the difficulties of utilitarianism. In addition, mandatory vaccination is difficult to justify based on the perspective of fairness theory, that is, “justice as the fairness” of John Rawls and H. L. A. Hart’s principle of fairness. From the point of view of Hare’s utilitarianism and fairness theory, it has been shown that mandatory vaccination is not easily justified. In reality, the power of the state continues to strengthen, and we should examine this situation from a critical point of view.

为应对新冠肺炎疫情,韩国社会已寻求为大部分人口接种疫苗。因此,韩国政府试图通过提高人们对疫苗益处的认识来强制接种疫苗。政府基于功利主义的观点,声称接种疫苗是有益的,而不是有害的,从而推动了强制性疫苗接种。然而,基于R·M·黑尔提出的两个层次的功利主义,这种观点很难被证明是合理的。强制接种既不能满足普遍性,也不能满足偏好,暴露出功利主义的困境。此外,基于公平理论的观点,即约翰·罗尔斯和H.L.A.哈特的公平原则的“公平即正义”,强制接种疫苗是很难证明的。从黑尔的功利主义和公平理论的角度来看,强制接种疫苗并不容易。事实上,国家的权力在不断加强,我们应该从批判的角度来审视这种情况。
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引用次数: 1
Is the Cure Worse than the Disease? The Ethics of Imposing Risk in Public Health 治愈比疾病更糟糕吗?公共卫生中的风险伦理
IF 2.9 Q1 Arts and Humanities Pub Date : 2022-09-10 DOI: 10.1007/s41649-022-00218-1
Diego S. Silva, Maxwell J. Smith

Abstract

Efforts to improve public health, both in the context of infectious diseases and non-communicable diseases, will often consist of measures that confer risk on some persons to bring about benefits to those same people or others. Still, it is unclear what exactly justifies implementing such measures that impose risk on some people and not others in the context of public health. Herein, we build on existing autonomy-based accounts of ethical risk imposition by arguing that considerations of imposing risk in public health should be centered on a relational autonomy and relational justice approach. Doing so better captures what makes some risk permissible and others not by exploring the importance of power and context in such deliberations. We conclude the paper by applying a relational account of risk imposition in the cases of (a) COVID-19 measures and (b) the regulation of sugar-sweetened beverages to illustrate its explanatory power.

摘要在传染病和非传染病的背景下,改善公共卫生的努力往往包括采取措施,使一些人面临风险,为这些人或其他人带来好处。尽管如此,在公共卫生的背景下,实施这些给一些人带来风险而不是给其他人带来风险的措施的确切理由尚不清楚。在此,我们在现有的基于自主性的道德风险施加解释的基础上,认为在公共卫生中施加风险的考虑应该以关系自主和关系正义的方法为中心。通过探索权力和背景在此类审议中的重要性,这样做可以更好地捕捉到允许一些风险和不允许其他风险的原因。最后,我们在(a)新冠肺炎措施和(b)含糖饮料监管的情况下应用了风险施加的关系描述,以说明其解释力。
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引用次数: 0
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Asian Bioethics Review
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