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ELSA and RRI--Editorial. ELSA和RRI——社论。
IF 3.1 Q1 Arts and Humanities Pub Date : 2015-01-01 Epub Date: 2015-01-29 DOI: 10.1186/s40504-014-0021-8
Ellen-Marie Forsberg

This editorial presents the background for the article collection 'ELSA and RRI'. It sets the stage for the topics discussed in the collection and briefly presents the different contributions. It concludes by opening up for continued discussion of the relations between ELSA and RRI.

这篇社论介绍了文章集“ELSA和RRI”的背景。它为文集中讨论的主题奠定了基础,并简要介绍了不同的贡献。最后,它为继续讨论ELSA和RRI之间的关系打开了大门。
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引用次数: 10
Challenges of web-based personal genomic data sharing. 基于网络的个人基因组数据共享的挑战。
IF 3.1 Q1 Arts and Humanities Pub Date : 2015-01-01 Epub Date: 2015-03-27 DOI: 10.1186/s40504-014-0022-7
Mahsa Shabani, Pascal Borry

In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. Personal webpages and on-line data sharing platforms such as Consent to Research (Portable Legal Consent), Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals' control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration.

为了研究基因与疾病之间的关系,越来越多的表现型和基因型数据的可获得性和共享已成为科学界的当务之急。与临床医生和研究人员的数据共享实践并行,最近已经观察到个人共享个人基因组数据的举措。私人测试提供商提供的个人基因组数据的可访问性增加,以及在线网络的可用性,促进了个人参与此类举措。个人网页和在线数据共享平台,如“研究同意”(便携式法律同意)、“释放数据”和“解压缩基因组”,正被用于托管和共享个人上传的基因型、电子健康记录和家族史。尽管个人基因组数据共享倡议的性质各不相同,但强调个人对其数据的控制,以便有利于研究并最终有利于医疗保健,已被视为贯穿这些倡议的一个关键主题。随着个人基因组数据共享的实践日益增多,本文旨在阐明围绕这些举措的潜在挑战。在这些倡议的过程中,个人被要求单独平衡分享他们的基因组数据的风险和利益,他们意识到个人基因组数据共享对他们自己和他们的家庭成员的影响是必要的。此外,鉴于基因组数据的敏感性以及围绕其完全去识别性的争议,必须考虑到数据意外使用所带来的潜在隐私风险和危害。
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引用次数: 28
We have never been ELSI researchers - there is no need for a post-ELSI shift. 我们从来都不是ELSI的研究人员——没有必要进行后ELSI的转变。
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-12-01 Epub Date: 2014-04-05 DOI: 10.1186/s40504-014-0009-4
Bjørn Kåre Myskja, Rune Nydal, Anne Ingeborg Myhr

This article criticizes recent suggestions that the current ELSI research field should accommodate a new direction towards a 'post-ELSI' agenda. Post-ELSI research seeks to avoid the modernist division of responsibility for technical and social issues said to characterize ELSI research. Collaboration and integration are consequently the key terms of post-ELSI strategies that are to distinguish it from ELSI strategies. We argue that this call for a new direction relies on an inadequate generalized analysis of ELSI research as modern that will affect the construal of post-ELSI strategies. We are concerned that the call for post-ELSI shift will exclude imaginative proposals and intellectual freedom by narrowing down the scope and methodologies of ELSI and thereby missing opportunities to play a critical and constructive normative role. Instead of framing current trends in ELSI research as a radical and progressive shift from ELSI to post-ELSI, we suggest an alternative story of expansion and diversification described in terms of a drift from ELSA 1 to ELSA 2, pertaining to acronyms in use in Europe. ELSI research has never been modern. It has been experimenting from the very start on ways to mesh the works of humanist, social and natural scientist in order to bridge and build alignments of emerging scientific and societal goals and matters of concern. The development from ELSA 1 to ELSA 2 expands in our account the range of intellectual and methodological capacities of analysis and engagement of complex and dynamic science-society relationships. We present three areas of ELSA expertise to illustrate that the expertise within the field builds on scholarly achievements within the humanities, social sciences as well as the natural sciences. The plurality of disciplinary background of ELSA researchers represents a valuable diversity that enables mutual criticism and formulations of complementary approaches that together constitute a viable ELSA field.

本文批评了最近关于当前ELSI研究领域应该适应“后ELSI”议程的新方向的建议。后ELSI研究试图避免现代主义对技术和社会问题的责任划分,这被认为是ELSI研究的特征。因此,协作和整合是后ELSI战略区别于ELSI战略的关键术语。我们认为,这种对新方向的呼吁依赖于对ELSI研究作为现代研究的不充分的广义分析,这将影响后ELSI战略的解释。我们担心,呼吁后ELSI的转变会缩小ELSI的范围和方法,从而排除富有想象力的建议和知识自由,从而失去发挥关键和建设性规范作用的机会。与其将ELSI研究的当前趋势视为从ELSI到后ELSI的激进和渐进转变,我们建议根据ELSA 1到ELSA 2的漂移来描述扩展和多样化的另一种故事,这与欧洲使用的首字母缩略词有关。ELSI研究从来都不是现代的。它从一开始就在尝试如何将人文主义、社会和自然科学家的工作结合起来,以便在新兴的科学和社会目标以及关注的问题之间建立联系和联系。从ELSA 1到ELSA 2的发展在我们的账户中扩展了分析和参与复杂和动态科学-社会关系的智力和方法能力的范围。我们提出了ELSA专业知识的三个领域,以说明该领域的专业知识建立在人文科学、社会科学和自然科学的学术成就之上。ELSA研究人员的学科背景多元化代表了一种有价值的多样性,使相互批评和制定互补方法成为可能,共同构成一个可行的ELSA领域。
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引用次数: 26
The intersection of relational autonomy and narrative ethics for the patient unwilling to disclose genetic diagnosis information. 不愿透露遗传诊断信息的患者的关系自主与叙事伦理的交集。
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-12-01 Epub Date: 2014-03-18 DOI: 10.1186/s40504-014-0007-6
Michael Gallagher

The rare case of the patient unwilling to disclose genetic data to his or her family provides an opportunity to expand the atomistic conception of the autonomous individual in medical decision-making. Medical practitioners naturally avoid violating patient autonomy and privacy. However, unwilling disclosure can damage the health of people other than the patient. In this situation, professionals must weigh the principle of autonomy against the nature of relationships, duties, and confidentialities between patient, professional, and family. The paradigm case studied is that of a patient with a potentially dangerous heart condition, Long QT Syndrome 3. Patients with Long QT 3 are at high risk for dying of ventricular tachycardia during rest, especially from ages 40-60. Once familial genetic testing was completed, the proband's mother, who was positive for the mutation, chose not to inform her estranged sister of the diagnosis.This paper examines the ethical duties of the physician to inform a patient's extended family of a serious genetic diagnosis, with a focus on the emotional and psychological effects of genetic testing. The need to adapt the process of violating confidentiality around considerations for the patient's emotional state and narrative will be addressed. This approach considers the patient's narrative, standpoint, and relationships as a way to develop a support plan and will present a guideline for cases where the probability of significant harm to others supersedes the patient's preference of non-disclosure as well as the physician's respect of confidentiality. The paper seeks to expand the conversation on genetic testing and autonomy beyond principles by considering all parties involved and emphasizes the use of the varied resources available to medical practitioners, especially to provide the best help possible without overburdening physicians with duties.

患者不愿向其家人透露基因数据的罕见情况,为扩大医疗决策中自主个体的原子概念提供了机会。医生自然会避免侵犯病人的自主权和隐私。然而,不情愿的披露会损害病人以外的人的健康。在这种情况下,专业人员必须权衡自主原则与病人、专业人员和家属之间关系、职责和保密的本质。研究的典型案例是一个患有潜在危险心脏病的患者,长QT综合征3。长QT 3期患者在休息期间死于室性心动过速的风险很高,尤其是40-60岁的患者。家族基因检测完成后,先证者的母亲选择不告诉她疏远的妹妹这个诊断结果,她的基因突变呈阳性。本文探讨了医生的道德责任,告知病人的大家庭严重的遗传诊断,重点是基因检测的情感和心理影响。需要适应的过程中违反保密的考虑病人的情绪状态和叙述将被解决。这种方法将患者的叙述、立场和关系作为制定支持计划的一种方式,并将在对他人造成重大伤害的可能性取代患者不愿透露的偏好以及医生对保密的尊重的情况下提供指导方针。该文件试图通过考虑所有相关方来扩大关于基因检测和自主权的对话,超越原则,并强调利用医疗从业者可用的各种资源,特别是在不增加医生职责负担的情况下提供尽可能最好的帮助。
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引用次数: 0
Ethical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan. 个人基因组分析研究政策的伦理考量:日本基因组科学计划的方法。
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-12-01 Epub Date: 2014-04-05 DOI: 10.1186/s40504-014-0004-9
Jusaku Minari, Tetsuya Shirai, Kazuto Kato

As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than heretofore. These developments present a challenge to the conventional framework of biomedical ethics; under these changing circumstances, each research project has to develop a pragmatic research policy. Based on the experience with a new large-scale project-the Genome Science Project-this article presents a novel approach to conducting a specific policy for personal genome research in the Japanese context. In creating an original informed-consent form template for the project, we present a two-tiered process: making the draft of the template following an analysis of national and international policies; refining the draft template in conjunction with genome project researchers for practical application. Through practical use of the template, we have gained valuable experience in addressing challenges in the ethical review process, such as the importance of sharing details of the latest developments in genomics with members of research ethics committees. We discuss certain limitations of the conventional concept of informed consent and its governance system and suggest the potential of an alternative process using information technology.

正如高通量测序仪所证明的那样,基因组技术最近经历了根本性的进步。这些技术使个人基因组的全面测序比以前更有效,更便宜。这些发展对传统的生物医学伦理框架提出了挑战;在这些不断变化的环境下,每个研究项目都必须制定一个务实的研究政策。基于一个新的大规模项目——基因组科学项目的经验,本文提出了一种在日本背景下实施个人基因组研究具体政策的新方法。在为项目创建原始知情同意书模板时,我们提出了一个两层流程:根据对国家和国际政策的分析制定模板草案;与基因组计划的研究人员一起完善模板草案,以供实际应用。通过实际使用模板,我们在应对伦理审查过程中的挑战方面获得了宝贵的经验,例如与研究伦理委员会成员分享基因组学最新发展细节的重要性。我们讨论了知情同意的传统概念及其治理系统的某些局限性,并建议使用信息技术的替代过程的潜力。
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引用次数: 4
Limiting and facilitating access to innovations in medicine and agriculture: a brief exposition of the ethical arguments. 限制和促进获取医药和农业创新成果:伦理论点简述。
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-12-01 Epub Date: 2014-04-05 DOI: 10.1186/s40504-014-0008-5
Cristian Timmermann

Taking people's longevity as a measure of good life, humankind can proudly say that the average person is living a much longer life than ever before. The AIDS epidemic has however for the first time in decades stalled and in some cases even reverted this trend in a number of countries. Climate change is increasingly becoming a major challenge for food security and we can anticipate that hunger caused by crop damages will become much more common.Since many of the challenges humanity faced in the past were overcome by inventive solutions coming from the life sciences, we are compelled to reconsider how we incentivize science and technology development so that those in need can benefit more broadly from scientific research. There is a huge portion of the world population that is in urgent need for medicines to combat diseases that are currently neglected by the scientific community and could immensely benefit from agricultural research that specifically targets their environmental conditions. At the same time efforts have to be made to make the fruits of current and future research more widely accessible. These changes would have to be backed by a range of moral arguments to attract people with diverging notions of global justice. This article explores the main ethical theories used to demand a greater share in the benefits from scientific progress for the poor. Since life sciences bring about a number of special concerns, a short list of conflictive issues is also offered.

以人的寿命作为衡量美好生活的标准,人类可以自豪地说,普通人的寿命比以往任何时候都要长得多。然而,艾滋病的流行数十年来首次在一些国家停滞不前,在某些情况下甚至逆转了这一趋势。由于人类过去面临的许多挑战都是通过生命科学的创造性解决方案来克服的,我们不得不重新考虑如何激励科技发展,使有需要的人能够更广泛地受益于科学研究。世界上有很大一部分人急需药物来防治目前被科学界忽视的疾病,他们可以从专门针对其环境条件的农业研究中获益匪浅。与此同时,还必须努力使当前和未来的研究成果能够得到更广泛的利用。这些变化必须得到一系列道德论据的支持,以吸引对全球正义有着不同看法的人们。本文探讨了用于要求让穷人分享更多科学进步成果的主要道德理论。由于生命科学带来了一些特殊的问题,本文还提供了一份冲突问题的简短清单。
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引用次数: 0
Early detection of criminality concerns and the social link. 早期发现犯罪问题与社会联系密切。
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-12-01 Epub Date: 2014-05-14 DOI: 10.1186/s40504-014-0013-8
Laurence Perbal

In modern societies, rhetoric focused on body and health is common as biomedical sciences have taken a big place in people's lives. They must enhance the society, health and living conditions of citizens. Solving criminality problems remains a major challenge and the early detection of antisocial children - future offenders - promises to offer a solution to criminality thanks to science and medical advances. But in a democratic society that values ​​solidarism and pluralism and tends to preserve the social link, it is necessary to question the ethical relevance of this method of managing criminality. This paper proposes to analyze these questions in the light of debates that have troubled France for a number of years.

在现代社会,随着生物医学科学在人们的生活中占据重要地位,关注身体和健康的修辞很常见。它们必须改善公民的社会、健康和生活条件。解决犯罪问题仍然是一项重大挑战,由于科学和医学的进步,及早发现反社会儿童——未来的罪犯——有望提供解决犯罪问题的办法。但是,在一个重视团结主义和多元化并倾向于保持社会联系的民主社会中,有必要质疑这种管理犯罪方法的道德相关性。本文拟根据困扰法国多年的争论来分析这些问题。
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引用次数: 1
The role of philosophy of science in Responsible Research and Innovation (RRI): the case of nanomedicine. 科学哲学在负责任的研究与创新(RRI)中的作用:以纳米医学为例。
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-12-01 Epub Date: 2014-04-26 DOI: 10.1186/s40504-014-0005-8
Gry Oftedal

Research on ethical, legal and social aspects (ELSA) of life sciences and new technologies has mainly been focused on impacts and consequences, while the emerging framework of Responsible Research and Innovation (RRI) focuses rather on increased involvement and reflexivity in research processes to foster science and technology that better answers the needs of society. I argue that philosophy of science should be a central feature of RRI and demonstrate how the philosophy of science can contribute in this sense. I show how investigating basic assumptions in research, here exemplified by reductive assumptions in causal modeling, can have important ethical and societal implications.

生命科学和新技术的伦理、法律和社会方面(ELSA)研究主要集中在影响和后果上,而新兴的负责任研究与创新(RRI)框架更侧重于在研究过程中增加参与和反思,以促进科学和技术更好地满足社会需求。我认为科学哲学应该是RRI的核心特征,并论证了科学哲学如何在这方面做出贡献。我展示了如何在研究中调查基本假设,这里以因果模型中的简化假设为例,可以产生重要的伦理和社会影响。
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引用次数: 19
The use of agrobiodiversity for plant improvement and the intellectual property paradigm: institutional fit and legal tools for mass selection, conventional and molecular plant breeding. 利用农业生物多样性进行植物改良和知识产权范例:大规模选择、传统和分子植物育种的制度适宜性和法律工具。
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-12-01 Epub Date: 2014-06-27 DOI: 10.1186/s40504-014-0014-7
Fulya Batur, Tom Dedeurwaerdere

Focused on the impact of stringent intellectual property mechanisms over the uses of plant agricultural biodiversity in crop improvement, the article delves into a systematic analysis of the relationship between institutional paradigms and their technological contexts of application, identified as mass selection, controlled hybridisation, molecular breeding tools and transgenics. While the strong property paradigm has proven effective in the context of major leaps forward in genetic engineering, it faces a systematic breakdown when extended to mass selection, where innovation often displays a collective nature. However, it also creates partial blockages in those innovation schemes rested between on-farm observation and genetic modification, i.e. conventional plant breeding and upstream molecular biology research tools. Neither overly strong intellectual property rights, nor the absence of well delineated protection have proven an optimal fit for these two intermediary socio-technological systems of cumulative incremental innovation. To address these challenges, the authors look at appropriate institutional alternatives which can create effective incentives for in situ agrobiodiversity conservation and the equitable distribution of technologies in plant improvement, using the flexibilities of the TRIPS Agreement, the liability rules set forth in patents or plant variety rights themselves (in the form of farmers', breeders' and research exceptions), and other ad hoc reward regimes.

本文着眼于严格的知识产权机制对植物农业生物多样性在作物改良中的应用的影响,深入系统地分析了制度范例与其应用的技术背景之间的关系,确定为大规模选择,控制杂交,分子育种工具和转基因。虽然强属性范式在基因工程的重大飞跃中被证明是有效的,但当扩展到大规模选择时,它面临着系统性的崩溃,在大规模选择中,创新往往表现出集体的性质。然而,它也在农场观察和基因改造之间的创新计划中造成了部分障碍,即传统的植物育种和上游分子生物学研究工具。事实证明,无论是过于强大的知识产权,还是缺乏明确界定的保护,都不适合这两种累积增量创新的中间社会技术系统。为了应对这些挑战,这组作者着眼于适当的制度选择,利用《与贸易有关的知识产权协定》的灵活性、专利或植物品种权本身规定的责任规则(以农民、育种者和研究例外的形式)以及其他特别奖励制度,为就地农业生物多样性保护和植物改良技术的公平分配创造有效的激励。
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引用次数: 8
The past and future of RRI RRI的过去和未来
IF 3.1 Q1 Arts and Humanities Pub Date : 2014-11-06 DOI: 10.1186/s40504-014-0017-4
A. Rip
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引用次数: 1
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Life Sciences, Society and Policy
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