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Can biosampling really be "non-invasive"? An examination of the socially invasive nature of physically non-invasive biosampling in urban and rural Malawi. 生物采样真的可以 "非侵入性 "吗?对马拉维城市和农村地区非侵入性生物采样的社会侵入性进行研究。
Q1 Arts and Humanities Pub Date : 2024-09-09 eCollection Date: 2024-01-01 DOI: 10.1080/11287462.2024.2398303
Myness Kasanda Ndambo, Christopher Bunn, Martyn Pickersgill, Robert C Stewart, Amelia C Crampin, Maisha Nyasulu, Beatson Kanyenda, Wisdom Mnthali, Eric Umar, Rebecca M Reynolds, Lucinda Manda-Taylor

Glucocorticoids are understood to represent useful biomarkers of stress and can be measured in saliva, hair, and breastmilk. The collection of such biosamples is increasingly included in biobank and cohort studies. While collection is considered "non-invasive" by biomedical researchers (compared to sampling blood), community perspectives may differ. This cross-sectional, qualitative study utilising eight focus groups aimed to determine the feasibility and acceptability of collecting ostensibly "non-invasive" biological samples in Malawi. Breastfeeding women, couples, field workers, and healthcare providers were purposively sampled. Data about prior understandings of, barriers to, and feasibility of "non-invasive" biosampling were analysed. Participants described biomaterials intended for "non-invasive" collection as sometimes highly sensitive, with sampling procedures raising community concerns. Sampling methods framed as physically "non-invasive" within biomedicine can consequently be considered socially "invasive" by prospective sample donors. Biomedical and community framings of "invasiveness' can therefore diverge, and the former must respond to and be informed by the perspectives of the latter. Further, considerations of collection procedures are shaped by therapeutic misconceptions about the immediate health-related utility of biomedical and public health research. When researchers engage with communities about biosampling, they must ensure they are not furthering therapeutic misconceptions and actively seek to dispel these.

据了解,糖皮质激素是压力的有用生物标志物,可在唾液、头发和母乳中测量。在生物库和队列研究中,收集此类生物样本的工作越来越多。虽然生物医学研究人员认为采集生物样本是 "非侵入性 "的(与血液采样相比),但社区的观点可能有所不同。这项横断面定性研究利用八个焦点小组,旨在确定在马拉维收集表面上 "非侵入性 "生物样本的可行性和可接受性。研究人员有目的地对哺乳期妇女、夫妇、现场工作人员和医疗服务提供者进行了抽样调查。对有关 "非侵入性 "生物采样的先前理解、障碍和可行性的数据进行了分析。据参与者描述,用于 "非侵入性 "采集的生物材料有时非常敏感,采样程序引起了社区的关注。在生物医学中被视为物理上 "非侵入性 "的采样方法,可能会被潜在的样本捐献者视为社会上的 "侵入性 "采样方法。因此,生物医学和社区对 "侵入性 "的定义可能会有分歧,前者必须对后者的观点做出回应,并从后者的观点中获得信息。此外,关于生物医学和公共卫生研究对健康的直接效用的治疗误解也会影响对采集程序的考虑。当研究人员就生物采样问题与社区接触时,他们必须确保不会进一步加深治疗误解,并积极设法消除这些误解。
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引用次数: 0
The expressivist argument for recent policy changes regarding the provision of prenatal testing in Japan. 日本最近关于提供产前检查的政策变化的表达论证。
Q1 Arts and Humanities Pub Date : 2024-09-02 eCollection Date: 2024-01-01 DOI: 10.1080/11287462.2024.2398299
Aya Enzo

The Japanese government and medical professionals have negative attitudes toward the provision of prenatal testing and related information due to social concern regarding discrimination against persons with disabilities. However, with the rapid increase in the number of non-invasive prenatal tests, particularly at non-certificated medical facilities, in response to the growing demand from pregnant women, the Japanese government and medical professional associations have enacted radical changes marking an active commitment to the provision of information on these services. While a major justification for these policy changes is to ensure respect for reproductive autonomy and women's self-determination, they may reinforce the concern regarding discrimination. This article investigated the argument that these new policies may reinforce discrimination and examined three objections to this argument. The results revealed that the recent policy changes, particularly for specific fetal traits, may imply a negative belief about people living with the same traits. Consequently, fundamental institutional changes are necessary.

由于社会对歧视残疾人的担忧,日本政府和医疗专业人员对提供产前检查和相关信息持消极态度。然而,随着无创产前检测数量的快速增长,特别是在非认证医疗机构,为满足孕妇日益增长的需求,日本政府和医疗专业协会已经做出了彻底的改变,标志着对提供这些服务信息的积极承诺。虽然这些政策变化的主要理由是确保尊重生育自主权和妇女的自决权,但它们可能会加深人们对歧视的担忧。本文调查了这些新政策可能会加剧歧视的论点,并研究了对这一论点的三种反对意见。研究结果表明,最近的政策变化,尤其是针对特定胎儿特征的政策变化,可能暗示了人们对具有相同特征的人的负面看法。因此,有必要进行根本性的制度改革。
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引用次数: 0
A youth advisory group on health and health research in rural Cambodia. 柬埔寨农村地区健康和健康研究青年咨询小组。
Q1 Arts and Humanities Pub Date : 2024-06-07 eCollection Date: 2024-01-01 DOI: 10.1080/11287462.2024.2361968
Mom Ean, Rupam Tripura, Phann Sothea, Uch Savoeun, Thomas J Peto, Sam Bunthynn, James J Callery, Ung Soviet, Lek Dysoley, Phaik Yeong Cheah, Bipin Adhikari

Engaging young people in health research has been promoted globally. We explored the outcomes of youth advisory group on health and research engagement (YAGHRE) in rural Cambodia. In May 2021, the Mahidol Oxford Tropical Medicine Research Unit (MORU) partnered with a local health centre and a secondary school to establish a youth engagement group. Ten students underwent training and led health engagement activities in schools and communities. Activities were documented as field notes and audio-visual materials which underwent content analysis using theory of change supplemented by iterative discussions with YAGHRE members and stakeholders. Five major outcomes were identified: 1. Increased respect. Engagement activities developed based on input from students and stakeholders may have fostered greater respect. 2. Built trust and relationships. Frequent visits to MORU's laboratory and interactions with researchers appeared to contribute to the building of trust and relationship. 3. Improved health and research literacy. Learning new health and research topics, through participatory activities may have improved literacy; 4. Improved uptake of health and research interventions. Health promotional activities and communication with research participants potentially increased the uptake of interventions; 5. Improved community health. YAGHRE's health promotional interventions may have contributed in enhancing community's health.

让年轻人参与健康研究已在全球范围内得到推广。我们探讨了柬埔寨农村地区青年健康与研究参与咨询小组(YAGHRE)的成果。2021 年 5 月,玛希隆牛津大学热带医学研究中心(Mahidol Oxford Tropical Medicine Research Unit,MORU)与当地一家健康中心和一所中学合作成立了青年参与小组。十名学生接受了培训,并在学校和社区开展了健康参与活动。这些活动以现场笔记和音像资料的形式记录下来,并通过与 YAGHRE 成员和利益相关者的反复讨论,使用变革理论对其进行了内容分析。确定了五项主要成果:1.增强尊重。根据学生和利益相关者的意见制定的参与活动可能会促进更多的尊重。2.建立信任和关系。经常参观莫鲁实验室并与研究人员互动似乎有助于建立信任和关系。3.提高健康和研究素养。通过参与性活动学习新的健康和研究课题可能会提高素养; 4. 提高对健康和研究干预措施的接受程度。健康宣传活动以及与研究参与者的交流可能会提高干预措施的使用率; 5. 改善社区健康。YAGHRE 的健康促进干预措施可能有助于提高社区的健康水平。
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引用次数: 0
May Artificial Intelligence take health and sustainability on a honeymoon? Towards green technologies for multidimensional health and environmental justice. 人工智能能带着健康和可持续性度蜜月吗?实现多维健康和环境正义的绿色技术。
Q1 Arts and Humanities Pub Date : 2024-03-11 eCollection Date: 2024-01-01 DOI: 10.1080/11287462.2024.2322208
Cristian Moyano-Fernández, Jon Rueda, Janet Delgado, Txetxu Ausín

The application of Artificial Intelligence (AI) in healthcare and epidemiology undoubtedly has many benefits for the population. However, due to its environmental impact, the use of AI can produce social inequalities and long-term environmental damages that may not be thoroughly contemplated. In this paper, we propose to consider the impacts of AI applications in medical care from the One Health paradigm and long-term global health. From health and environmental justice, rather than settling for a short and fleeting green honeymoon between health and sustainability caused by AI, it should aim for a lasting marriage. To this end, we conclude by proposing that, in the upcoming years, it could be valuable and necessary to promote more interconnected health, call for environmental cost transparency, and increase green responsibility. Highlights Using AI in medicine and epidemiology has some benefits in the short term.AI usage may cause social inequalities and environmental damage in the long term.Health justice should be rethought from the One Health perspective.Going beyond anthropocentric and myopic cost-benefit analysis would expand health justice to include an environmental dimension.Greening AI would help to reconcile public and global health measures.

人工智能(AI)在医疗保健和流行病学中的应用无疑会给人们带来许多好处。然而,由于其对环境的影响,人工智能的使用可能会产生社会不平等和长期的环境破坏,而这些问题可能没有得到充分考虑。在本文中,我们建议从 "一个健康 "范式和全球长期健康的角度来考虑人工智能应用于医疗保健的影响。从健康与环境正义出发,与其满足于人工智能带来的健康与可持续发展之间短暂而短暂的绿色蜜月,不如以持久的联姻为目标。为此,我们在总结中提出,在未来几年里,促进更多相互关联的健康、呼吁环境成本透明化以及增强绿色责任,可能是有价值和必要的。亮点 在医学和流行病学中使用人工智能在短期内会带来一些益处,但从长远来看,人工智能的使用可能会造成社会不平等和环境破坏,应从 "一个健康 "的角度重新思考健康正义问题,超越以人类为中心和近视的成本效益分析,将健康正义扩展到环境层面,人工智能的绿色化将有助于协调公共和全球健康措施。
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引用次数: 0
Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework 南非生物库研究的广泛同意--建立有利的伦理-法律框架
Q1 Arts and Humanities Pub Date : 2023-12-20 DOI: 10.1080/11287462.2023.2288331
M. Maseme, Jillian Gardner, Safia Mahomed
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引用次数: 0
Applying the ecosystem approach to global bioethics: building on the Leopold legacy 将生态系统方法应用于全球生物伦理:以利奥波德的遗产为基础
Q1 Arts and Humanities Pub Date : 2023-11-21 DOI: 10.1080/11287462.2023.2280289
Antoine Boudreau LeBlanc, B. Williams-Jones
ABSTRACT For Van Rensselaer Potter (1911–2001), Global Bio-Ethics is about building on the legacy of Aldo Leopold (1887–1948), one of the most notable forest managers of the twentieth century who brought to light the importance of pragmatism in the sciences and showed us a new way to proceed with environmental ethics. Following Richard Huxtable and Jonathan Ives's methodological 'Framework for Empirical Bioethics Research Projects' called 'Mapping, framing, shaping,' published in BMC Medicine Ethics (2019)), we propose operationalizing a framework for Global Bio-Ethics by hybridizing approaches in empirical bioethics and ecosystem management. We explain this framework using the metaphor of forest management. This mixed approach is articulated through three phases: (1) mapping the “landscape” to build a working theory, (2) framing the “scene” to prepare the fieldwork, and (3) shaping bioethics “tools” to stimulate cooperation. Applying this methodology, an adaptive management cycle is outlined to help ensure that political processes are sustainable and socially acceptable, still based on strategic and ethical thinking, but also capable of reshaping failing policies. GRAPHICAL ABSTRACT
ABSTRACT For Van Rensselaer Potter (1911-2001), Global Bio-Ethics is about building on the legacy of Aldo Leopold (1887-1948), one of the most famous forest managers of the 20th century who brought to light of pragmatism in the sciences and showed us a new way to proceed with environmental ethics.理查德-哈克斯塔布(Richard Huxtable)和乔纳森-艾夫斯(Jonathan Ives)在《BMC Medicine Ethics》(2019年)上发表了名为 "Mapping, framing, shaping "的 "实证生物伦理学研究项目框架"(Framework for Empirical Bioethics Research Projects)的方法论。我们用森林管理的比喻来解释这一框架。这种混合方法分为三个阶段:(1) 绘制 "景观 "图以建立工作理论,(2) 构建 "场景 "以准备实地工作,(3) 塑造生物伦理 "工具 "以促进合作。运用这种方法,概述了一个适应性管理周期,以帮助确保政治进程是可持续的和社会可接受的,仍然以战略和伦理思考为基础,但也能够重塑失败的政策。图表摘要
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引用次数: 0
"'It is very difficult in this business if you want to have a good conscience': pharmaceutical governance and on-the-ground ethical labor in Ghana": a letter to editors. “‘如果你想问心无愧,这在这个行业是非常困难的’:加纳的制药治理和实地道德劳动”:致编辑的一封信。
Q1 Arts and Humanities Pub Date : 2023-10-18 eCollection Date: 2023-01-01 DOI: 10.1080/11287462.2023.2268885
Livia Maria de Souza Gonçalves, Felipe Felizardo Mattos Vieira, Ariadne Botto Fiorot, Sthefany Brito Salomão, Luciano Soares

Establishing effective pharmaceutical governance is a challenge for government agencies, private enterprises, and professionals working on the ground, demanding complex ethical decisions from the actors involved, especially in a lower-middle-income country like Ghana. This letter aims to share the author's perspectives and additional considerations on the analyses of the reports in the paper "It is very difficult in this business if you want to have a good conscience": pharmaceutical governance and on-the-ground ethical labor in Ghana by Hampshire et al. The letter's authors discuss the need to advance universal health coverage in Ghana, the everyday ethics, and the disparities between the collective and individual moral consciousness of the participants, as well as other aspects of governance in the pharmaceutical sector.

建立有效的药品治理对政府机构、私营企业和在当地工作的专业人员来说是一项挑战,要求相关行为者做出复杂的道德决策,尤其是在加纳这样的中低收入国家。这封信旨在分享作者对汉普郡等人撰写的《如果你想问心无愧,在这个行业是非常困难的》一文中报告分析的观点和其他考虑:加纳的药品治理和实地道德劳动,参与者的集体和个人道德意识之间的差异,以及制药部门治理的其他方面。
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引用次数: 0
Ethical implications for children's exclusion in the initial COVID-19 vaccination in Ghana. 加纳将儿童排除在最初的COVID-19疫苗接种之外的伦理影响。
Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1080/11287462.2023.2168170
Samuel Asiedu Owusu

Bioethics provides various models of fair allocation of scarce health resources like COVID-19 vaccines. Even though these models are grounded in some ethical principles like justice and beneficence, there were severe inequalities in global access to COVID-19 vaccines. In Ghana, about 21.5 million COVID-19-doses have been administered but comprise mainly members of the adult population. As a result, ethical issues related to vaccinating children have been largely ignored in the country. This paper explores some of the ethical implications related to children's exclusion in the initial COVID-19 vaccination programs in Ghana. It provides a general overview of the COVID-19 pandemic in Ghana and how it related to children and discusses the risks to which Ghanaian children were exposed by delaying their COVID-19 vaccination. A guide to facilitating the full rollout of COVID-19 vaccination in Ghana for children has been proposed that indicates that a fair vaccine distribution for children should prioritize children on admission at health facilities, those diagnosed with severe underlying health conditions, and children who could play an instrumental role in promoting vaccine uptake. It concludes that children must not be placed at the peripheries of the COVID-19 vaccination program in Ghana.

生物伦理学为公平分配COVID-19疫苗等稀缺卫生资源提供了多种模式。尽管这些模式以正义和慈善等道德原则为基础,但在全球获得COVID-19疫苗方面存在严重不平等。在加纳,已接种了约2150万剂covid -19疫苗,但主要是成年人。因此,与儿童接种疫苗有关的伦理问题在该国基本上被忽视。本文探讨了加纳最初的COVID-19疫苗接种计划中与儿童被排除在外有关的一些伦理问题。它概述了COVID-19在加纳的大流行及其与儿童的关系,并讨论了加纳儿童因推迟接种COVID-19疫苗而面临的风险。已经提出了一份促进在加纳全面推广COVID-19儿童疫苗接种的指南,该指南指出,公平的儿童疫苗分配应优先考虑在卫生机构入院的儿童、被诊断患有严重潜在健康问题的儿童以及可以在促进疫苗接种方面发挥重要作用的儿童。报告的结论是,加纳不应将儿童置于COVID-19疫苗接种计划的边缘。
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引用次数: 0
Participant views on practical considerations for feedback of individual genetic research results: a case study from Botswana. 与会者对个别遗传研究结果反馈的实际考虑的看法:来自博茨瓦纳的案例研究。
Q1 Arts and Humanities Pub Date : 2023-01-01 DOI: 10.1080/11287462.2023.2192329
Dimpho Ralefala, Mary Kasule, Olivia P Matshabane, Ambroise Wonkam, Mogomotsi Matshaba, Jantina de Vries

Key to discussions around feedback of individual results from genomics research are practical questions on how such results should be fed back, by who and when. However, there has been virtually no work investigating these practical considerations for feedback of individual genetic results in the context of low-and middle-income countries (LMICs), especially in Africa. Consequently, we conducted deliberative focus group discussions with 6 groups of adolescents (n = 44) who previously participated in a genomics study in Botswana as well as 6 groups of parents and caregivers (n = 49) of children who participated in the same study. We also conducted in-depth interviews with 6 adolescents and 6 parents or caregivers. Our findings revealed that both adolescents and parents would prefer to receive their individual genetic results in person, with adolescents preferring researchers to provide feedback, while parents preferred doctors who are associated with the study. Both adolescents and parents further expressed that feedback should be supported by counselling but differed on the timing of feedback, with preferences ranging from feedback as quickly as possible to feedback at project end. In conclusion, decisions on practicalities for feedback of results should be done in account of participants' context and considerations of participants' preferences.

关于基因组学研究的个人结果反馈的讨论的关键是关于这些结果应该如何反馈,由谁以及何时反馈的实际问题。然而,在低收入和中等收入国家(LMICs)的背景下,特别是在非洲,几乎没有研究这些实际考虑的个人遗传结果反馈的工作。因此,我们与6组曾参与博茨瓦纳基因组学研究的青少年(n = 44)以及参与同一研究的6组儿童的父母和看护人(n = 49)进行了审慎的焦点小组讨论。我们还对6名青少年和6名家长或照顾者进行了深度访谈。我们的研究结果表明,青少年和父母都更愿意亲自收到他们的个人基因结果,青少年更喜欢研究人员提供反馈,而父母更喜欢与研究相关的医生。青少年和家长都进一步表示,反馈应得到咨询的支持,但在反馈的时间上存在分歧,从尽快反馈到在项目结束时反馈不等。总之,关于结果反馈的实用性的决定应考虑到参与者的情况和考虑参与者的偏好。
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引用次数: 0
"It is very difficult in this business if you want to have a good conscience": pharmaceutical governance and on-the-ground ethical labour in Ghana. “在这个行业,如果你想问心无愧是非常困难的”:加纳的制药治理和实地道德劳工。
Q1 Arts and Humanities Pub Date : 2022-07-26 eCollection Date: 2022-01-01 DOI: 10.1080/11287462.2022.2103899
Kate Hampshire, Simon Mariwah, Daniel Amoako-Sakyi, Heather Hamill

The governance of pharmaceutical medicines entails complex ethical decisions that should, in theory, be the responsibility of democratically accountable government agencies. However, in many Low- and Middle-Income Countries (LMICs), regulatory and health systems constraints mean that many people still lack access to safe, appropriate and affordable medication, posing significant ethical challenges for those working on the "front line". Drawing on 18 months of fieldwork in Ghana, we present three detailed case studies of individuals in this position: an urban retail pharmacist, a rural over-the-counter medicine retailer, and a local inspector. Through these case studies, we consider the significant burden of "ethical labour" borne by those operating "on the ground", who navigate complex moral, legal and business imperatives in real time and with very real consequences for those they serve. The paper ends with a reflection on the tensions between abstract, generalised ethical frameworks based on high-level principles, and a pragmatic, contingent ethics-in-practice that foregrounds immediate individual needs - a tension rooted in the gap between the theory and the reality of pharmaceutical governance that shifts the burden of ethical labour downwards and perpetuates long-term public health risks.

药物的治理涉及复杂的伦理决策,理论上,这应该是民主问责的政府机构的责任。然而,在许多低收入和中等收入国家,监管和卫生系统的限制意味着许多人仍然无法获得安全、适当和负担得起的药物,这对在“一线”工作的人构成了重大的伦理挑战。根据在加纳18个月的实地考察,我们提出了三个详细的案例研究:城市零售药剂师、农村非处方药零售商和当地检查员。通过这些案例研究,我们考虑到那些“在现场”操作的人所承担的“道德劳动”的重大负担,他们实时处理复杂的道德、法律和商业要求,并为他们所服务的人带来非常现实的后果。论文最后反思了基于高级原则的抽象的、概括的伦理框架与强调个人直接需求的实用的、偶然的实践伦理之间的紧张关系——这种紧张关系植根于制药治理理论与现实之间的差距,这种差距将伦理劳动的负担向下转移,并使长期的公共卫生风险长期存在。
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引用次数: 5
期刊
Global Bioethics
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