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What are We Asking Patients to Do? A Critical Ethical Review of the Limits of Patient Self-Advocacy in the Oncology Setting. 我们要求患者做什么?对肿瘤治疗中患者自我辩护局限性的批判性伦理审查》(Critical Ethical Review of the Limits of Patient Self-Advocacy in the Oncology Setting)。
IF 1.2 Q2 ETHICS Pub Date : 2023-06-01 Epub Date: 2022-11-14 DOI: 10.1080/20502877.2022.2143742
Daniel A Wilkenfeld, Teresa Hagan Thomas

Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (i.e., health-related, trust-based, and psychological); we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient's perspective relative to the challenges they are experiencing and work with them to meet their needs.

越来越多地强调患者的自我管理,包括让患者为自己的需求和优先事项代言,这通常是件好事,但并不总是患者想要或能够实现的。这篇批判性伦理评论的目的是通过揭示患者在自我倡导方面所面临的各种困境,深化当前关于患者自我倡导的讨论。利用肿瘤患者群体的实例,我们对自我主张的不同概念进行了区分,然后提出了对要求较高的各种自我主张的限制(即与健康相关、基于信任和心理的自我主张);我们认为,这些限制造成了伦理困境,即鼓励患者进行自我主张是否总是可取的。我们的结论是,就癌症患者的获益程度而言,自我倡导既可能被低估,也可能被高估,很多情况下是不确定的。归根结底,医疗服务提供者必须了解病人对其所经历的挑战的看法,并与他们合作以满足他们的需求。
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引用次数: 0
Sunni Islamic perspectives on lab-grown sperm and eggs derived from stem cells - in vitro gametogenesis (IVG). 逊尼派伊斯兰教对从干细胞中获得的实验室培养精子和卵子的观点——体外配子发生(IVG)。
IF 1.2 Q2 ETHICS Pub Date : 2023-06-01 DOI: 10.1080/20502877.2022.2142094
Gamal Serour, Mohammed Ghaly, Shaikh Mohd Saifuddeen, Ayaz Anwar, Noor Munirah Isa, Alexis Heng Boon Chin

An exciting development in the field of assisted reproductive technologies is In Vitro Gametogenesis (IVG) that enables production of functional gametes from stem cells in the laboratory. Currently, development of this technology is still at an early stage and has demonstrated to work only in rodents. Upon critically examining the ethical dimensions of various possible IVG applications in human fertility treatment from a Sunni Islamic perspective, together with benefit-harm (maslahah-mafsadah) assessment; it is concluded that utilization of IVG, once its efficacy and safety are guaranteed, could be permissible by strictly adhering to Islamic ethical principles related to marriage, biological/genetic relatedness, sexual intercourse, and moral status of the embryo/fetus versus that of the gamete. As a result, IVG will be acceptable for treating primary infertility, age-related infertility, and preventing genetic diseases. However, it will be unacceptable for application in posthumous reproduction, donor gametes, genetic enhancement, and procreation in same-sex couples.

体外配子发生(IVG)是辅助生殖技术领域的一个令人兴奋的发展,它使干细胞在实验室中产生功能性配子成为可能。目前,这项技术的发展仍处于早期阶段,并已证明仅适用于啮齿动物。从逊尼派伊斯兰的角度,结合益-害(maslahah-mafsadah)评估,批判性地审查了IVG在人类生育治疗中各种可能应用的伦理层面;结论是,一旦IVG的有效性和安全性得到保证,就可以通过严格遵守与婚姻、生物/遗传关系、性交和胚胎/胎儿相对于配子的道德地位有关的伊斯兰伦理原则来允许使用IVG。因此,IVG将可用于治疗原发性不孕症、年龄相关性不孕症和预防遗传性疾病。然而,它在死后生殖、供体配子、基因增强和同性伴侣的生殖方面的应用是不可接受的。
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引用次数: 1
Coerced Abortion - The Neglected Face of Reproductive Coercion. 强迫堕胎——生育强迫被忽视的一面。
IF 1.2 Q2 ETHICS Pub Date : 2023-06-01 DOI: 10.1080/20502877.2022.2136026
Gregory K Pike

Reproductive coercion encompasses a collection of pregnancy promoting and pregnancy avoiding behaviours. Coercion may vary in severity and be perpetrated by intimate partners or others. Research is complicated by the inclusion of behaviours that do not necessarily involve an intention to influence reproduction, such as contraceptive sabotage. These behaviours are the most common, but are not always included in survey instruments. This may explain why the prevalence of reproductive coercion varies widely. Prevalence also varies when coerced abortion is included in survey instruments. When it is, it seems roughly comparable in prevalence to coercion intended to impregnate. The extent and nature of coerced abortion can also be derived from studies that explore the reasons why women access abortion, the relationship between abortion and intimate partner violence, and online blogs and forums. This narrative review of reproductive coercion examines the evidence and attempts to comprehend why coerced abortion has been neglected.

生殖强迫包括一系列促进怀孕和避免怀孕的行为。胁迫的严重程度可能不同,可能由亲密伴侣或其他人实施。由于纳入了不一定涉及影响生殖意图的行为,例如破坏避孕措施,研究变得复杂。这些行为是最常见的,但并不总是包括在调查工具中。这也许可以解释为什么生育强迫的流行程度差异很大。当调查工具中包括强迫堕胎时,患病率也有所不同。当这种情况发生时,其流行程度似乎与强迫怀孕大致相当。强迫堕胎的程度和性质也可以从探讨妇女堕胎原因、堕胎与亲密伴侣暴力之间的关系以及在线博客和论坛的研究中得出。这篇关于生殖强迫的叙述性评论审查了证据,并试图理解为什么强迫堕胎被忽视了。
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引用次数: 2
Life Is All About Choices. 生活就是选择。
IF 1.2 Q2 ETHICS Pub Date : 2023-06-01 DOI: 10.1080/20502877.2023.2214772
Matt James
As we attempt to move on from the Covid-19 pandemic, the mounting pressures on health and social care are striking for all to see. Many of the articles in this issue speak to this theme: access to treatment, standards of care and practice and what it means to deliver patient-centred care. Pike’s article helps to bring some valuable insight to the collective understanding concerning Reproductive Coercion (RC). Much has been written in the literature about reproductive autonomy and how this can be influenced and impeded by others, but use of the term RC has opened up the discussion still further concerning decision making in the realm of reproductive health. As Pike notes, whilst research in the field is helpful in illuminating the extent of the issue, it is complicated by the inclusion of behaviours that do not necessarily involve an intention to influence reproduction, such as contraceptive sabotage. Pike helpfully unpacks and explores the fact that coercion and reproductive autonomy are each ‘conceptually complex ideas as much as they are pragmatically complex ones’. Discussion cannot simply be reduced to stating that one is good or bad. More precision is needed as to the severity and detail of the coercion to better understand the extent of the problem. To this end, Pike argues that to do this survey questions should aim not only to equally address all elements of RC, but also to distinguish between actions that intentionally coerce someone into pregnancy and those that override autonomy but without intent to induce pregnancy. In cases where contraceptive interference takes place, with no intention to induce pregnancy, it may even be better understood not as RC, but instead as behaviours impinging on sexual consent and openness between partners and deserving separate consideration. The degree of recognition and understanding of RC as pregnancy pressure and contraceptive sabotage has improved, yet the same cannot be said of coerced abortion. It is hoped that a response to this takes place far quicker than the time it has taken to recognize and respond to coerced adoption. As Pike comments, ‘The first step is to recognize that it does happen, that it is relatively common, and that it not only leads to more adverse outcomes than when coercion is absent, but also denies women their fundamental right to informed consent.’ Keeping with this theme of reproductive health, if the arrival of the first ‘test tube’ baby in 1978 is recognized as transforming human fertility, then advances in In Vitro Gametogenesis (IVG) look set to usher in a new era of assisted reproduction. the new bioethics, Vol. 29 No. 2, 2023, 81–84
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引用次数: 0
'Swear by Thy Gracious Self': North American Medical Oath-Taking in 2014/2015. “以你仁慈的自我起誓”:2014/2015年度北美医学宣誓
IF 1.2 Q2 ETHICS Pub Date : 2023-06-01 DOI: 10.1080/20502877.2022.2150129
Nathan Gamble, Benjamin Holler, Stephen Murata

Over the past century, six studies - the most recent data from 2000 - and one review have comprehensively examined the content of medical oaths and oath-taking practices, all focusing on North America, providing an insight into the ethical beliefs of each era. Our study sought to establish a new point of reference. In 2014/2015, oaths from 150 of all 153 US and Canadian medical schools were collected and analyzed. All but one school administered medical oaths and most schools administered more than one. Since 2000, student-written oaths became more popular, and new themes, such as self-care and professionalism, were identified in the oaths for the first time. However, as was identified in 2000, the oaths' contents are disparate and even conflicting at times, raising questions as to whether medicine is being taught or practiced with a coherent ethical worldview.

在过去的一个世纪里,有六项研究——最新的数据来自2000年——和一篇综述全面考察了医学宣誓和宣誓实践的内容,所有这些研究都集中在北美,提供了对每个时代伦理信仰的洞察。我们的研究试图建立一个新的参考点。2014/2015年,我们收集和分析了美国和加拿大153所医学院中的150所医学院的誓言。除了一所学校外,所有学校都有医学宣誓,大多数学校都有不止一项。自2000年以来,学生写的誓言变得更加流行,自我保健和专业等新主题首次出现在誓言中。然而,正如2000年所发现的那样,这些誓言的内容是完全不同的,有时甚至是相互冲突的,这引发了人们对医学教学或实践是否带有连贯的伦理世界观的质疑。
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引用次数: 0
Ethical Challenges Associated with Pathogen and Host Genetics in Infectious Disease. 与传染病病原体和宿主遗传学相关的伦理挑战。
IF 1.2 Q2 ETHICS Pub Date : 2023-03-01 DOI: 10.1080/20502877.2022.2109697
Richard Milne, Christine Patch

The Covid-19 pandemic has demonstrated the potential of genomic technologies for the detection and surveillance of infectious diseases. Pathogen genomics is likely to play a major role in the future of research and clinical implementation of genomic technologies. However, unlike human genetics, the specific ethical and social challenges associated with the implementation of infectious disease genomics has received comparatively little attention. In this paper, we contribute to this literature, focusing on the potential consequences for individuals and communities of the use of these technologies. We concentrate on areas of challenges related to privacy, stigma, discrimination and the return of results in the cases of the surveillance of known pathogens, metagenomics and host genomics.

2019冠状病毒病大流行证明了基因组技术在检测和监测传染病方面的潜力。病原体基因组学可能在基因组技术的未来研究和临床应用中发挥重要作用。然而,与人类遗传学不同,与实施传染病基因组学相关的具体伦理和社会挑战受到的关注相对较少。在本文中,我们对这一文献做出了贡献,重点关注使用这些技术对个人和社区的潜在后果。我们专注于与隐私、污名化、歧视和已知病原体、宏基因组学和宿主基因组学监测结果返回相关的挑战领域。
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引用次数: 3
The New Social Contract for Genomics. 基因组学的新社会契约。
IF 1.2 Q2 ETHICS Pub Date : 2023-03-01 DOI: 10.1080/20502877.2022.2139621
Edward Hockings

The belief that genomics requires rethinking the 'social contract' to realize its potential has received backing from leading figures within bioethics. The case for a new social contract is anchored in notions of solidarity, altruism or the common good. But national genome sequencing is playing out against a backdrop of greatly increased involvement, and investment, of governments in their life science sectors - creating a sort of international race to drive innovation, stimulate growth, and create the most competitive life science sectors. Recent developments in the UK suggest this agenda is detrimental to openness and transparency, as well as independent oversight, and meaningful public consultation. These aspects of governance, I argue, should be reconceived as part of the requirements of good governance. Further, a new social contract should involve a commitment by government, and industry, to educate the public about life science - and should be extended to life science more generally.

基因组学需要重新思考“社会契约”以实现其潜力的观点得到了生物伦理学领军人物的支持。建立新社会契约的理由是建立在团结、利他主义或共同利益的概念之上的。但是,国家基因组测序是在政府对其生命科学部门的参与和投资大大增加的背景下进行的——这创造了一种推动创新、刺激增长和创造最具竞争力的生命科学部门的国际竞赛。英国最近的事态发展表明,这一议程不利于公开性和透明度,也不利于独立监督和有意义的公众咨询。我认为,治理的这些方面应该被重新视为良好治理要求的一部分。此外,新的社会契约应该包括政府和工业界对公众进行生命科学教育的承诺——并且应该更广泛地扩展到生命科学。
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引用次数: 0
Ethical Considerations in Research with Genomic Data. 基因组数据研究中的伦理考虑。
IF 1.5 Q2 ETHICS Pub Date : 2023-03-01 Epub Date: 2022-04-28 DOI: 10.1080/20502877.2022.2060590
Rachel Horton, Anneke Lucassen

Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices.

目前,我们生成基因组数据的能力远远超过了我们理解它们含义的能力,这就提出了如何最好地利用它们的挑战。本文考虑伦理方面的工作与这些数据,集中在研究背景与临床护理交织在一起。我们讨论了基因组数据的识别性质,它们内在的医学信息,以及它们在生物家庭中的联系。我们继续考虑这对同意的意义,深思熟虑的基因组数据共享的重要性,构建有意义的发现的挑战,以及基因组数据集中不平等代表性的遗留问题。我们认为,基因组数据研究的持续成功依赖于公众对企业的信任:为了证明这种信任是合理的,我们需要确保强有力的管理,以及对此类实践中固有的道德问题的广泛参与。
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引用次数: 0
Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening. 将全基因组测序引入常规新生儿筛查的心理和伦理挑战:从现有新生儿筛查中吸取的教训。
IF 1.2 Q2 ETHICS Pub Date : 2023-03-01 DOI: 10.1080/20502877.2022.2124582
Fiona Ulph, Rebecca Bennett

As a psychologist and an ethicist, we have explored empirically newborn screening consent and communication processes. In this paper we consider the impact on families if newborn screening uses whole genome sequencing. We frame this within the World Health Organization's definition of health and contend that proposals to use whole genome sequencing in newborn screening take into account the ethical, practical and psychological impact of such screening. We argue that the important psychological processes occurring in the neonatal phase necessitate a clear justification that providing risk information at this stage provides a health benefit. We illustrate how research on current newborn screening can inform whole genome sequencing debates, whilst highlighting important gaps. Obtaining explicit, voluntary, and sufficiently informed consent for newborn screening is challenging, however we stress that such consent is ethically and legally appropriate and psychologically and practically important. We conclude by outling how this might be done.

作为一名心理学家和伦理学家,我们探索了新生儿筛查同意和沟通过程的经验。在本文中,我们考虑对家庭的影响,如果新生儿筛查使用全基因组测序。我们在世界卫生组织对健康的定义中提出了这一点,并认为在新生儿筛查中使用全基因组测序的建议考虑到了这种筛查的伦理、实践和心理影响。我们认为,新生儿阶段发生的重要心理过程需要一个明确的理由,即在这一阶段提供风险信息会对健康有益。我们说明了当前新生儿筛查的研究如何为全基因组测序辩论提供信息,同时强调了重要的差距。为新生儿筛查获得明确、自愿和充分知情的同意是具有挑战性的,但我们强调,这种同意在道德和法律上是适当的,在心理上和实践上都很重要。最后,我们概述了如何做到这一点。
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引用次数: 3
Genomics is here: what can we do with it, and what ethical issues has it brought along for the ride? 基因组学来了:我们能用它做什么?它带来了哪些伦理问题?
IF 1.2 Q2 ETHICS Pub Date : 2023-03-01 DOI: 10.1080/20502877.2023.2180839
Chris Willmott, John Bryant
2023 marks twenty years since the formal completion of the Human Genome Project (HGP). As many readers will know, this monumental international collaboration to determine the sequence of all three billion ‘letters’ (bases) in the human genome had taken legions of scientists more than a decade to achieve. Much was made of the power of this database to revolutionize our understanding of human biology and to herald the transforming potential of genetics for tailored medical treatments. Editorials at the time declared that the Genomic Era had arrived (e.g. Guttmacher and Collins 2003, Roses 2003). The phenomenal technical achievements of the HGP cannot be overstated. However, there was more than a hint of hype in the marketing of the project, not least in justifying the three billion dollars it was estimated to have cost. Between them, the official HGP and the rival Celera project had managed to produce completed reference genomes from a small collection of individuals, fewer than a dozen in total. Yet, much of the power of genomics comes not from the aspects of our DNAwe sharewith others (and those reference sequences), but from the differences that make us distinct, estimated to be roughly one base in every thousand. The available methodologies of the time simply could not deliver the types of personalised analysis promised in an economically viable and timely fashion.
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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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