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Expanding the notion of “benefit”: comparing public, parent, and professional attitudes towards whole genome sequencing in newborns 扩大“利益”的概念:比较公众、家长和专业人士对新生儿全基因组测序的态度

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-04-03 DOI: 10.1080/14636778.2022.2091533

C. Clark, F. Boardman

Whole genome sequencing (WGS) is being considered as a tool to deliver newborn screening (NBS) internationally. Its use would dramatically increase the number of genetic variants identified, presenting a host of ethical, social, and practical considerations. A scoping review was conducted to examine the acceptability of WGS-NBS among parents, the public, and health professionals. Parent/public groups were enthusiastic about WGS-NBS, holding panoramic views of current/future benefits, incorporating family and wider society. While actionable early-onset findings were prioritized, non-actionable and uncertain results were still viewed as empowering. Conversely, professionals preferred selective results disclosure, prioritized by clinical need. They emphasized the need for meaningful consent and protection of the child’s autonomy. All groups outlined the importance of properly considered implementation (e.g. resources, governance) to minimize harms and prevent a reduction in NBS participation. As genomic medicine integrates into healthcare, divergent conceptualizations of “harms” and “benefits” across social groups must be considered.

全基因组测序(WGS)正在国际上被视为提供新生儿筛查(NBS)的工具。它的使用将极大地增加已确定的基因变异的数量，提出了一系列伦理、社会和实际考虑。进行了一项范围审查，以检查家长、公众和卫生专业人员对WGS-NBS的接受程度。家长/公众团体对WGS-NBS充满热情，对当前/未来的利益有全局性的看法，将家庭和更广泛的社会结合起来。虽然可操作的早期发现被优先考虑，但不可操作和不确定的结果仍被视为授权。相反，专业人员更喜欢选择性结果披露，优先考虑临床需要。他们强调需要有意义的同意和保护儿童的自主权。所有小组都概述了适当考虑实施(例如资源、治理)的重要性，以尽量减少危害并防止减少国家统计局的参与。随着基因组医学融入医疗保健，必须考虑不同社会群体对“危害”和“益处”的不同概念。

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引用次数: 3

The new stage of public engagement with science in the digital media environment: citizen science communicators in the discussion of GMOs on Zhihu 数字媒体环境下公众参与科学的新阶段:知乎上转基因生物讨论中的公民科学传播者

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-04-03 DOI: 10.1080/14636778.2022.2063826

Zheng Yang

In the digital media environment, public engagement with science around controversial scientific topics such as genetically modified organisms (GMOs) has greatly expanded. But the public's role as science communicators in such engagement has been virtually ignored. Through an online ethnography of the discussion of GMOs on Zhihu, the biggest Chinese knowledge-sharing network, this study identifies a new group: citizen science communicators involved in online science communication. The emergence and popularity of this new group brings public engagement with science to a new stage – public engagement with science communication – and changes the role of the public in science communication from audiences to communicators. The development of digital platforms and the revolution of the understanding of science communication all contribute to the emergence and popularity of this group in the Chinese digital environment.

在数字媒体环境中，公众对诸如转基因生物(GMOs)等有争议的科学话题的科学参与已经大大扩大。但是公众在这种参与中作为科学传播者的角色实际上被忽视了。通过对知乎(中国最大的知识共享网络)上转基因生物讨论的在线人种志研究，本研究确定了一个新的群体:参与在线科学传播的公民科学传播者。这一新群体的出现和普及将公众参与科学带入了一个新的阶段——公众参与科学传播——并将公众在科学传播中的角色从受众转变为传播者。数字平台的发展和对科学传播认识的变革都促成了这一群体在中国数字环境中的出现和普及。

引用次数: 3

Environmental sustainability and biobanking: a pilot study of the field 环境可持续性和生物银行:该领域的试点研究

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-04-03 DOI: 10.1080/14636778.2022.2093707

G. Samuel, F. Hardcastle, A. Lucassen

Biobanks have expanded dramatically over the past few decades, as have their storage and computational requirements. These requirements have environmental impacts, including mineral extraction and manufacturing processes associated with digital infrastructures, carbon emissions related to sample storage and data storage and analysis, and associated waste. Here we analyse whether biobanks have any specific policies about these environmental impacts. We also explore the ethical assumptions associated with how people with a professional stake in these discussions - those researchers using biobank resources, digital sustainability experts – think about these issues, and the implications embedded within them. Biobanks we spoke to had no specific relevant policies and researchers reported little awareness of issues. When researchers did discuss the issues, they often drew on consequentialist narratives and/or appealing to worse problems. Some researchers and digital sustainability experts suggested approaches to improving existing and future biobanking practices, though not in a standardised way.

在过去的几十年里，生物银行的存储和计算需求急剧增长。这些要求会对环境产生影响，包括与数字基础设施相关的矿物开采和制造过程，与样品存储和数据存储和分析相关的碳排放，以及相关的废物。在这里，我们分析了生物银行是否对这些环境影响有任何具体的政策。我们还探讨了与这些讨论中有专业利害关系的人(那些使用生物银行资源的研究人员，数字可持续性专家)如何思考这些问题以及其中隐含的含义相关的伦理假设。我们采访的生物银行没有具体的相关政策，研究人员也表示对这些问题的认识很少。当研究人员讨论这些问题时，他们经常采用结果主义的叙述和/或诉诸于更糟糕的问题。一些研究人员和数字可持续性专家提出了改进现有和未来生物银行实践的方法，尽管不是以标准化的方式。

引用次数: 4

Exploring “quality” in cord blood transfusion: uncertainties, bionetworks, and collaborations 探索脐带血输血的“质量”:不确定性、生物网络和合作

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-04-03 DOI: 10.1080/14636778.2022.2077183

B. Lonergan, R. Williams, T. Matsushige, L. Machin

Umbilical cord blood unit (CBU) “quantity” continues to grow internationally, while cord blood transplantation (CBT) “quality” remains poorly defined and subject to uncertainty. CBT “quality” is affected by both the product (i.e. CBUs) and CBT processes, with “best practice” varying across countries. To improve overall CBT “quality”, we need to better understand the uncertainty associated with CBUs and CBT processes and how staff manage it. In this qualitative study, we conducted in-depth semi-structured interviews with individuals working in CBT in UK and Japan. We found that understanding of CBT quality by the cord blood community is underpinned by the quality of the CBU, the expertise and collaboration of scientific and clinical stakeholders, trust in collection and testing processes and international accreditation. Importantly, we found that local and individual experience is used to manage uncertainty within CBT, and we propose that selection guidelines should acknowledge the extent of uncertainty in decision-making.

国际上脐带血单位(CBU)“数量”持续增长，而脐带血移植(CBT)“质量”仍然定义不清，且存在不确定性。CBT“质量”受到产品(即cbu)和CBT过程的影响，“最佳做法”因国家而异。为了提高CBT的整体“质量”，我们需要更好地了解与cbu和CBT过程相关的不确定性，以及员工如何管理它。在这项定性研究中，我们对英国和日本从事CBT工作的个人进行了深入的半结构化访谈。我们发现，脐带血社区对CBT质量的理解是由CBU的质量、科学和临床利益相关者的专业知识和合作、对收集和测试过程的信任以及国际认证所支撑的。重要的是，我们发现当地和个人经验被用于管理CBT中的不确定性，我们建议选择指南应该承认决策中的不确定性程度。

引用次数: 0

Conviction: the making and unmaking of the violent brain 信念:暴力大脑的形成和瓦解

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-03-08 DOI: 10.1080/14636778.2022.2045482

Owen Whooley

the cost of reproducing debilitating falsehoods about the true source of most disease threats. The material and rhetorical risks in this strategy became evident as COVID-19 spread across from a prosperous China into Europe and North America. PPE was stockpiled and vaccines pre-emptively bought up for their own populations by the wealthy states. The iron lock of global patent law remained in place. Moreover, since the threat was internal to the northern hemisphere, the south was initially ignored, then favoured with sporadic charitable donations all made with an eye to geopolitical advantage. In the face of the indifference of the global north and the failure of global health, attention has been directed to south-south solutions, including negotiating coalitions in international organisations, the creation of local vaccine manufacturing capacity, and the development of continental multilateralism in health, for example through the African Union. Of course, it is important not to romanticise the nation state or to overlook its historical failings, and indeed D’Arcangelis is careful not to do so. Nonetheless, as she suggests, within the current situation it offers a space of ‘ethical exception’ from which to resist the injustices of health imperialism.

对大多数疾病威胁的真正来源再生产使人衰弱的谎言的代价。随着COVID-19从繁荣的中国蔓延到欧洲和北美，这一战略的物质和言辞风险变得明显。富裕国家囤积个人防护装备，并为本国民众预先购买疫苗。全球专利法的铁锁依然存在。此外，由于威胁是北半球内部的，南半球最初被忽视，然后得到零星的慈善捐赠，所有这些都是着眼于地缘政治优势。面对全球北方的冷漠和全球卫生的失败，人们把注意力转向了南南解决办法，包括在国际组织中建立谈判联盟、建立当地疫苗制造能力，以及发展大陆卫生方面的多边主义，例如通过非洲联盟。当然，重要的是不要把民族国家浪漫化，也不要忽视它的历史失败，事实上，达安杰利斯也小心翼翼地避免这样做。尽管如此，正如她所建议的，在目前的情况下，它提供了一个“道德例外”的空间，从中抵制卫生帝国主义的不公正。

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引用次数: 7

Gene drive communication: exploring experts' lived experience of metaphor use. 基因驱动沟通:探索专家隐喻使用的生活经验。

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-01-12 eCollection Date: 2022-01-01 DOI: 10.1080/14636778.2021.2020633

Brigitte Nerlich, Aleksandra Stelmach

Metaphors have been crucial in making genetics and genomics public, from the code and the book of life to genetic scissors and gene surgery. A new field is emerging called "gene drive" - a range of controversial technologies that can potentially be used for the eradication or conservation of animal species. At the same time, metaphors are emerging to talk about the promises and dangers of "gene drive". In this article we use thematic analysis to examine thirty interviews with gene drive science and communication experts, and stakeholders, focusing on how they talk about their lived experience of metaphor use in the context of gene drive communication, including their struggle to remember salient metaphors and their reflections on which metaphors to use and which to avoid. We discuss the significance of our findings for research and practice of responsible science communication.

从密码和生命之书到基因剪刀和基因手术，隐喻在遗传学和基因组学的公开中起着至关重要的作用。一个叫做“基因驱动”的新领域正在兴起——这是一系列有争议的技术，有可能用于消灭或保护动物物种。与此同时，有关“基因驱动”的承诺和危险的隐喻也在不断涌现。在这篇文章中，我们使用主题分析来检查30位基因驱动科学和传播专家以及利益相关者的访谈，重点关注他们如何谈论他们在基因驱动传播背景下使用隐喻的生活经验，包括他们如何努力记住突出的隐喻，以及他们对使用和避免使用哪些隐喻的思考。我们讨论了我们的发现对负责任的科学传播的研究和实践的意义。

引用次数: 1

In Memoriam of Andrew Webster 纪念安德鲁·韦伯斯特

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-01-02 DOI: 10.1080/14636778.2022.2050033

R. Tutton, A. Hedgecoe, G. Thomas, Rosalynd Williams, Clancy Pegg

引用次数: 0

Laboring bodies and the quantified self 劳动的身体和量化的自我

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-01-02 DOI: 10.1080/14636778.2022.2029694

M. Crawley

引用次数: 0

"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens. “如果亲属遗传了基因，他们就应该继承数据。”把家人带进发生生物伦理的房间。

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-01-01 DOI: 10.1080/14636778.2021.2007065

Deborah R Gordon, Barbara A Koenig

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant's genetic results, since prevailing U.S. practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics- in which genetic information, privacy, and autonomy are considered to be familial- endorsed in UK genomic medicine and by participants in a multi-method study of U.S. research participants presented here. The dilemma reflects a conflict between U.S. legal and ethical frameworks that privilege "the individual" and exclude "the family" versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics' hegemonic individualism to recognize and place the family at the center of the room where bioethics happens?

生物亲属共享多达一半的遗传物质，包括对疾病的易感性。因此，在每个个体基因组中发现的具有临床意义的变异可能意味着具有潜在风险的亲属的指数数量。这重新引发了家庭获取研究参与者基因结果的困境，因为美国普遍的做法是将这些视为私人的，由个人控制。这些以个人为基础的伦理与以家庭为基础的伦理形成对比。在家庭为基础的伦理中，遗传信息、隐私和自主权被认为是家族性的，这在英国基因组医学中得到了认可，在一项针对美国研究参与者的多方法研究中也得到了认可。这一困境反映了美国法律和道德框架之间的冲突，即尊重“个人”而排斥“家庭”，而实际的人类基因则同时是个人和家族的。人类遗传学能否成功地挑战生命伦理学的霸权个人主义，承认并将家庭置于生命伦理学发生的中心位置?

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引用次数: 4

"Doing Good" in U.S. Cancer Genomics? Valuation practices across the boundaries of research and care in rural community oncology. 美国癌症基因组学“做得好”?评估实践跨越边界的研究和护理在农村社区肿瘤。

IF 1.8 4区医学 Q2 Social Sciences

New Genetics and Society

Pub Date : 2022-01-01 DOI: 10.1080/14636778.2022.2091532

Katherine Weatherford Darling, Michael Kohut, Susan Leeds, Eric C Anderson, Paul K J Han

Genomic Tumour Testing (GTT) is an emerging site of "experimental care" in oncology [Cambrosio, Alberto, Peter Keating, Etienne Vignola-Gagné, Sylvain Besle, and Pascale Bourret. 2018a. "Extending Experimentation: Oncology's Fading Boundary Bbetween Research and Care." New Genetics and Society 37 (3): 207-226. doi: 10.1080/14636778.2018.1487281]. Few efforts to implement GTT have reached community oncology practices or patients living in rural communities within the US. Drawing on interdisciplinary research on a state-wide cancer genomics initiative in the rural US state of Maine, this paper explores the valuation practices within community oncologist and cancer stakeholders accounts of "doing good" within genomic science and care. We contribute to STS literatures on the bio-economy by highlighting the affective dimensions of strategies for managing economic and non-economic values. Clinician and stakeholders negotiated de-economizing and capitalizing modes of doing good as they built local genomic platforms "for Maine." These situated modes of doing good and feeling good via cancer genomics shaped how they navigated the ethical ambiguities of US biomedical markets across the boundaries of research and care.

基因组肿瘤检测(GTT)是肿瘤学“实验护理”的新兴领域[Cambrosio, Alberto, Peter Keating, Etienne vignola - gagn， Sylvain Besle和Pascale Bourret. 2018a]。扩展实验:肿瘤学研究与护理之间逐渐消失的界限中国生物医学工程学报，37(3):444 - 444。doi: 10.1080 / 14636778.2018.1487281]。实施GTT的努力很少达到社区肿瘤学实践或生活在美国农村社区的患者。借鉴美国缅因州农村地区一项全州范围的癌症基因组学倡议的跨学科研究，本文探讨了社区肿瘤学家和癌症利益相关者在基因组科学和护理中“做好事”的评估实践。我们通过强调经济和非经济价值管理策略的情感维度，为STS关于生物经济的文献做出贡献。临床医生和利益相关者在“为缅因州”建立地方基因组平台的过程中，就去经济化和资本化模式进行了谈判。这些通过癌症基因组学做好事和感觉良好的定位模式，塑造了他们如何跨越研究和护理的界限，在美国生物医学市场的伦理模糊性中导航。

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