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Between Rocks and Hard Places: Good Governance in Ethically Divided Communities. 在岩石和坚硬的地方之间:种族分裂社区的良好治理。
IF 1.2 Q2 ETHICS Pub Date : 2023-09-01 DOI: 10.1080/20502877.2022.2149300
Roger Brownsword

This article, prompted by Heidi Crowter's campaign to eliminate the discriminatory aspects of current abortion law, outlines the challenges to good governance in a context of bioethical plurality. First, the nature of the plurality is sketched. Secondly, some reflections are presented on how those who have governance responsibilities might ease the tensions engendered by the plurality; and, at the same time, how the discontented governed might reasonably press their views. Thirdly, a model of good governance (demanding integrity by those who govern and respect for the global commons) is introduced. The conclusion is that good faith governance merits our respect, but it does not guarantee particular outcomes or positions that will meet with the approval of all bioethical constituencies or individuals. Accordingly, we have to learn not only to live with rocks and hard places but also to find civilized ways of debating our differences.

这篇文章是由Heidi Crowter发起的消除现行堕胎法歧视性方面的运动所推动的,它概述了在生物伦理多元化的背景下善治面临的挑战。首先,概述了多数的性质。其次,对那些有治理责任的人如何缓解多元化所产生的紧张局势进行了一些思考;与此同时,不满意的统治者如何合理地表达他们的观点。第三,介绍了一种善治模式(要求执政者廉正并尊重全球公域)。结论是,诚信治理值得我们尊重,但它并不能保证特定的结果或立场会得到所有生物伦理支持者或个人的认可。因此,我们不仅要学会与岩石和坚硬的地方共存,而且要找到文明的方式来辩论我们的分歧。
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引用次数: 1
Public Health England and Co-Production with the Fetal Anomaly Screening Programme. 英国公共卫生部与胎儿异常筛查项目联合制作。
IF 1.2 Q2 ETHICS Pub Date : 2023-09-01 DOI: 10.1080/20502877.2022.2147444
Colette Lloyd, Elizabeth Corcoran, Lynn Murray

As the new Cell-free DNA (Cf-DNA) prenatal screening test for Down syndrome was being introduced into the UK's fetal anomaly screening program, Down syndrome charities had an opportunity to participate. An experience of co-production where we were the minority voice then followed. This paper explores that process and our experience as a charity. Institutional and societal structures meant that it was difficult to be heard and a significant amount of bias was noted within the program. Consequently, our viewpoints were often considered and then dismissed. However, at times we were listened to, and feel that there were some valuable changes made resulting from our involvement. The end product was far from reflective of all that we stand for, and there are still lessons to be learned in England about the need to place a higher value on minority voices of lived experience in a co-production exercise.

随着新的无细胞DNA (Cf-DNA)产前筛查唐氏综合症测试被引入英国胎儿异常筛查计划,唐氏综合症慈善机构有机会参与其中。随后,我们开始了合作制片的经历,成为少数人的声音。本文探讨了这一过程和我们作为慈善机构的经验。制度和社会结构意味着它很难被听到,并且在程序中注意到大量的偏见。因此,我们的观点经常被考虑,然后被驳回。然而,有时我们的意见被听取了,并且感觉由于我们的参与而产生了一些有价值的变化。最终的作品远没有反映出我们所主张的一切,在英国,我们仍然需要吸取教训,在合作制作的过程中,需要更加重视少数群体的生活经验。
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引用次数: 0
Prenatal Testing, Disability, and the Ethical Society. 产前检测,残疾和道德社会。
IF 1.2 Q2 ETHICS Pub Date : 2023-09-01 DOI: 10.1080/20502877.2023.2240173
Heloise Robinson
This special issue of The New Bioethics follows on from a conference that took place at St Stephen’s House, University of Oxford, in March 2022, on ‘Prenatal Testing, Disability, and the Ethical Society: Reflections Following Crowter’. The conference title refers to an important decision from the High Court, R (Crowter) v Secretary of State for Health and Social Care. In this case, the claimants challenged the law on abortion on the grounds of disability under the Abortion Act 1967, and their arguments raised a number of difficult ethical questions about prenatal testing, disability, and what kind of society we wish to have – and what is needed for it to be an ‘ethical society’. Heidi Crowter, the first claimant in this case, spoke at the conference, as did Máire Lea-Wilson, the second claimant and the mother of Aidan Lea-Wilson, a young boy who was the third claimant. Both Heidi Crowter and Aidan Lea-Wilson have Down syndrome, although the issues raised in the case, and in the conference, relate to disability more broadly. The conference was interdisciplinary, and featured presentations relating to the law, philosophy, theology, medical practice, and it also included testimony based on the lived experience of disabled people. Likewise, this special issue includes articles written from the perspective of different disciplines. While the wider ethical issues relating to prenatal testing for disability are not new, and have been subject to extensive analysis in the academic literature, there was an original framing of rights-based arguments in Crowter, and, even though the claim was dismissed, the claimants did succeed in the sense that they drew significant attention to important issues. This case raised the possibility for fresh insights and new avenues for discussion. Of course, it should go without saying that even if the claimants did not convince the court of their particular legal arguments, this does not mean that there are not significant and difficult ethical issues to address. It also does not mean that the law as it stands is morally justified. Perhaps one of the best ways to frame the case is through the words of Heidi Crowter herself, who expressed her motivations for challenging the law in the following manner, during the conference: ‘The reason why I wanted to go to court is
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引用次数: 0
'A Knife into My Heart': Cries, Compassion and Ethical Life. “一刀插进我的心”:哭泣、同情和道德生活。
IF 1.2 Q2 ETHICS Pub Date : 2023-09-01 DOI: 10.1080/20502877.2022.2124604
Joshua Hordern

The subtitle to the conference upon which this journal issue is based invited us to 'follow Crowter'. This paper does so primarily by following the person and only thereby attends to the legal judgment. In particular, it will attend to her comment that When mum told me about the discrimination against babies like me in the womb, I felt like a knife had been put into my heart. It made me feel less valued than other people. The argument is that (I) there are strong reasons for such an approach from the field of theological ethics and that this is valuable for pastoral theology and for bioethics. With this case made, the argument proceeds (II) by following and building on three elements of Heidi Crowter's words concerning (a) the knife (b) the heart and (c) the person. The argument concludes (III) with theological reflection and deliberation regarding institutions, practices and actions which will make for 'ethical society', principally focussed on ecclesial life.

这期杂志所依据的会议的副标题邀请我们“关注克劳特”。本文主要通过对人的跟踪来做到这一点,只有这样才能关注法律判决。特别是,她说:“当妈妈告诉我像我这样的婴儿在子宫里受到歧视时,我感觉就像一把刀插进了我的心脏。”这让我觉得自己没有别人受重视。论点是:(1)从神学伦理领域来看,有充分的理由采用这种方法,而且这对教牧神学和生命伦理学是有价值的。有了这个案例,这个论点通过遵循和建立Heidi Crowter关于(a)刀(b)心和(c)人的话的三个要素来进行(II)。论证以神学的反思和思考来结束(III),这些反思和思考是关于“伦理社会”的制度、实践和行动,主要集中在教会生活上。
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引用次数: 0
Prospects for limiting access to prenatal genetic information about Down syndrome in light of the expansion of prenatal genomics. 鉴于产前基因组学的扩展,限制获取唐氏综合症产前遗传信息的前景。
IF 1.2 Q2 ETHICS Pub Date : 2023-09-01 DOI: 10.1080/20502877.2022.2130720
Chris Kaposy

Down syndrome (Trisomy 21) is a mild to moderate intellectual disability. Historically, this condition has been a primary target for prenatal testing. However, Down syndrome has not been targeted for prenatal testing because it is an especially severe illness. The condition was just one that could be easily identified prenatally using the techniques first available decades ago. We are moving into an era in which we can prenatally test for a vast range of human traits. I argue that when we can test for anything, there is no longer any reason to continue targeting Down syndrome. I present an argument based on the value of nondiscrimination. It is justified to set limits on access to prenatal information if the information is going to be used for discriminatory purposes. I use the examples of (1) prenatal testing for misogynistic fetal sex selection, and (2) homophobia-motivated prenatal testing for potential homosexuality, as compelling analogies.

唐氏综合症(21三体)是一种轻度到中度的智力残疾。从历史上看,这种情况一直是产前检测的主要目标。然而,唐氏综合症并不是产前检测的目标,因为它是一种特别严重的疾病。这种情况只是一种可以通过几十年前首次使用的技术轻松识别的情况。我们正在进入一个可以在产前测试大量人类特征的时代。我认为,当我们可以检测任何东西时,就没有理由继续以唐氏综合症为目标。我提出了一个基于不歧视价值的论点。如果产前信息将被用于歧视性目的,那么对获取产前信息设置限制是合理的。我用(1)厌恶女性的胎儿性别选择的产前检测和(2)同性恋恐惧症驱动的潜在同性恋的产前检测作为令人信服的类比。
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引用次数: 0
Assisted suicide and the European convention on human rights 协助自杀和欧洲人权公约
IF 1.2 Q2 ETHICS Pub Date : 2023-08-18 DOI: 10.1080/20502877.2023.2247876
James E. Hurford
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引用次数: 0
Ethical basics for the caring professions 关怀专业的道德基础
IF 1.2 Q2 ETHICS Pub Date : 2023-08-18 DOI: 10.1080/20502877.2023.2247880
Toni C Saad
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引用次数: 0
Why conscience matters: a defence of conscientious objection in healthcare 为什么良心很重要:为医疗保健中的良心反对辩护
IF 1.2 Q2 ETHICS Pub Date : 2023-06-03 DOI: 10.1080/20502877.2023.2219023
Toni C Saad
Why conscience matters is a landmark in the literature on conscientious objection in healthcare. In it, Xavier Symons, bioethicist and postdoctoral research fellow at Harvard University, makes the case for the fundamental role of conscience in healthcare, and rebuts the arguments of those who, over the last two decades, have attempted to undermine rights to conscientious objection. This book now succeeds Mark Wicclair’s Conscientious objection in health care: an ethical analysis (2011) as the required reading on the subject. Daniel Sulmasy makes a point in his forward whose correctness is clear to those following the debates around conscientious objection: ‘it may just be that conscience is not the issue’ (p. vii). He means that the debate hinges not on questions of the nature of conscience and the purposes of medicine but on questions of pluralism and tolerance – politics rather than ethics. Opponents of conscientious objection tend to elide the substantive philosophical questions, and view it solely as a hindrance to medical services, before proposing management solutions filtered through an authoritarian cultural lens. Although Symons’ work is not one of political philosophy, his account of the substantive philosophical questions is illuminating. Chapter 1, Introduction, sets out the book’s purpose and direction. Symons says of conscience:
为什么良心重要是一个里程碑的文献良心反对在医疗保健。在这本书中,哈佛大学生物伦理学家、博士后研究员泽维尔·西蒙斯(Xavier Symons)论证了良心在医疗保健中的基本作用,并反驳了过去20年来试图破坏良心拒服兵役权利的人的论点。这本书现在接替了马克·维克克莱尔的《医疗保健中的良心反对:伦理分析》(2011),成为该主题的必读书目。丹尼尔·苏玛西在他的前言中提出了一个观点,对于那些关注良心反对辩论的人来说,他的正确性很清楚:“良心可能不是问题所在”(第七页)。他的意思是,辩论的关键不是良心的本质和医学的目的,而是多元化和宽容的问题——政治而不是伦理。反对良心拒服兵役的人倾向于回避实质性的哲学问题,只把它看作是医疗服务的障碍,然后再通过专制文化的镜头提出管理解决方案。虽然西蒙斯的作品不是政治哲学,但他对实质性哲学问题的描述是有启发性的。第一章,引言,阐述了本书的目的和方向。西蒙斯谈到良心时说:
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引用次数: 0
Understanding Conscientious Objection and the Acceptability of its Practice in Primary Care. 理解良心反对及其在初级保健实践中的可接受性。
IF 1.2 Q2 ETHICS Pub Date : 2023-06-01 DOI: 10.1080/20502877.2022.2155099
Anne Williams

Ethically challenging or controversial medical procedures have prompted increasing requests for the exercise of conscientious objection, and caused concerns about how and when it should be practised. This paper clarifies definitions, especially with regard to discrimination, and explores the restrictions, duties, and practical limitations, in order to suggest criteria for its practice. It also argues that a conscientious refusal to treat, where there is therapeutic doubt, is a valid form of conscientious objection. An email survey sent to General Practitioners (GPs), explored the adherence to the suggested criteria, and assessed the outcomes, in terms of acceptability, impact, and difficulties experienced by the GPs, their colleagues and their patients. The results demonstrate high acceptability of conscientious objection, and better outcomes when the suggested criteria are adhered to. The GPs would support education to improve the practice of conscientious objection to a professional level, which could further improve outcomes and acceptability.

在道德上具有挑战性或有争议的医疗程序促使越来越多的人提出出于良心拒服兵役的要求,并引起人们对应如何以及何时进行拒服兵役的关切。本文澄清了其定义,特别是关于歧视的定义,并探讨了其限制、责任和实际限制,以便为其实践提出标准。它还认为,在治疗上有疑问的情况下,出于良心拒绝治疗是一种有效的出于良心反对的形式。一项发给全科医生(gp)的电子邮件调查,探讨了对建议标准的遵守情况,并从可接受性、影响和全科医生、他们的同事和病人经历的困难等方面评估了结果。结果表明,良心反对的可接受性很高,当建议的标准被遵守时,结果会更好。全科医生将支持教育,将良心拒服兵役的做法提高到专业水平,这可以进一步改善结果和可接受性。
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引用次数: 0
Toward a Standard of Medical Care: Why Medical Professionals Can Refuse to Prescribe Puberty Blockers. 迈向医疗保健标准:为什么医疗专业人员可以拒绝开青春期阻滞剂。
IF 1.2 Q2 ETHICS Pub Date : 2023-06-01 DOI: 10.1080/20502877.2022.2137906
Ryan Kulesa

That a standard of medical care must outline services that benefit the patient is relatively uncontroversial. However, one must determine how the practices outlined in a medical standard of care should benefit the patient. I will argue that practices outlined in a standard of medical care must not detract from the patient's well-functioning and that clinicians can refuse to provide services that do. This paper, therefore, will advance the following two claims: (1) a standard of medical care must not cause dysfunction, and (2) if a physician is medically rational to not provide some service which fails to meet the above condition (i.e. fails to be a standard of medical care), then she may refuse to do so. I then apply my thesis to the prescription of puberty blockers to children with gender dysphoria.

医疗保健标准必须列出对病人有益的服务,这一点相对来说是没有争议的。但是,必须确定医疗标准中概述的做法如何使患者受益。我认为,医疗保健标准中列出的做法绝不能损害病人的良好功能,临床医生可以拒绝提供这样的服务。因此,本文将提出以下两个主张:(1)标准的医疗护理不能导致功能障碍,(2)如果医生在医学上是合理的,不提供一些不符合上述条件的服务(即不符合标准的医疗护理),那么她可以拒绝这样做。然后,我将我的论文应用于青春期阻滞剂对患有性别焦虑症的儿童的处方。
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引用次数: 0
期刊
New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body
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