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Disclosure of insurability risks in research and clinical consent forms 在研究和临床同意书中披露保险风险
Q1 Arts and Humanities Pub Date : 2016-01-02 DOI: 10.1080/11287462.2016.1183442
S. Salman, Ida Ngueng Feze, Y. Joly
ABSTRACT Genetic testing results and research findings raise concerns about access to genetic information by insurers. Recently, the Canadian Life and Health Insurance Association reaffirmed its prerogative to request, for underwriting purposes, the disclosure of clinical and research genetic test results if the participant/patient or his physician has knowledge of the results. Studies have shown that access to genetic information to determine insurability can, in limited instances, lead to actual, or fear of, genetic discrimination, result in individuals refusing to undergo testing or declining participation in genomic research, and being asked to pay higher premiums or denied access to certain types of insurance. Obtaining informed consent for genetic testing and genomic research is crucial and should take into account the potential need to disclose possible insurability risks to patients and participants. Our study analyzed clinical and research consent forms, templates and guidelines from Quebec to investigate two questions: (1) whether consent forms include clauses providing information on potential insurability risks and (2) when such potential risks are included, what information is provided and how it is formulated. Our findings show that current information on insurability risks in Quebec’s forms/guidelines lack coherence, potentially resulting in patients/participants receiving inconsistent information.
基因检测结果和研究发现引起了人们对保险公司获取基因信息的担忧。最近,加拿大生命和健康保险协会重申,如果参与者/患者或其医生知道临床和研究基因检测结果,它有权为承保目的要求披露这些结果。研究表明,在有限的情况下,获得遗传信息以确定可保性可能导致实际的或对遗传歧视的恐惧,导致个人拒绝接受检测或拒绝参与基因组研究,并被要求支付更高的保费或被拒绝获得某些类型的保险。获得基因检测和基因组研究的知情同意至关重要,并应考虑到向患者和参与者披露可能的保险风险的潜在需要。我们的研究分析了来自魁北克的临床和研究同意书、模板和指南,以调查两个问题:(1)同意书是否包括提供潜在保险风险信息的条款;(2)当这些潜在风险包括在内时,提供了哪些信息以及如何制定。我们的研究结果表明,目前魁北克表格/指南中关于保险风险的信息缺乏一致性,可能导致患者/参与者接收到不一致的信息。
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引用次数: 2
“There are many eggs in my body”: medical markets and commodified bodies in India “我的身体里有很多鸡蛋”:印度的医疗市场和商品化的身体
Q1 Arts and Humanities Pub Date : 2015-10-02 DOI: 10.1080/11287462.2015.1112625
Sunita Reddy, T. Patel
With breakthroughs in science and reproductive technologies, “natural” birthing has undergone change due to the “assisted” use of conceptive technologies. Bodies and their parts have become commodities, to be sold and purchased in medical markets. In the literature, there have been numerous debates on commercialization and commodification, which have addressed the biopolitical and bioethical aspects of organ, egg and sperm donations, and gestational commercial surrogacy. This paper examines the everyday experiences of surrogates and egg donors, coerced and enticed into selling their reproductive services (for familial and socio-economic reasons), which become commodities for the larger medical markets of India's In Vitro Fertilization (IVF) industry. Based on a qualitative study of 4 IVF clinics and 28 surrogates in a state capital city of a southern state in India, this paper addresses the issue of commodification of women's bodies, where the women from lower socio-economic families are either lured or pushed to respond to the demands of reproductive markets. However, legal gestational commercial surrogacy in India, without clear laws and regulations to guide it, is a complex issue and raises many bioethical concerns. This paper limits itself to addressing the commodification of surrogates’ bodies.
随着科学和生殖技术的突破,由于受孕技术的“辅助”使用,“自然”分娩发生了变化。身体和身体部位已经成为商品,可以在医疗市场上买卖。在文献中,有许多关于商业化和商品化的争论,这些争论涉及器官、卵子和精子捐赠以及妊娠商业代孕的生物政治和生物伦理方面。本文考察了代孕母亲和卵子捐赠者的日常经历,他们被强迫和引诱出售生殖服务(出于家庭和社会经济原因),这些服务成为印度体外受精(IVF)行业更大的医疗市场的商品。基于对印度南部一个邦首府城市的4家试管婴儿诊所和28名代孕者的定性研究,本文探讨了女性身体商品化的问题,即来自社会经济地位较低家庭的女性要么被引诱,要么被推动,以满足生殖市场的需求。然而,在印度,由于没有明确的法律法规来指导,合法的妊娠商业代孕是一个复杂的问题,并引发了许多生物伦理问题。这篇论文仅限于解决代孕身体的商品化问题。
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引用次数: 5
Social determinants of health inequalities: moving toward a socio-constructivist model supported by information and communication technologies 健康不平等的社会决定因素:向信息和通信技术支持的社会建构主义模式迈进
Q1 Arts and Humanities Pub Date : 2015-10-02 DOI: 10.1080/11287462.2015.1101213
Ivana Matteucci
There is a proven connection between an individual's social condition and his/her life expectancy and likelihood of contracting diseases. Indeed, a large body of scientific evidence shows that social inequalities, in particular, are the main “cause” of harm to health. The interpretation provided by the theory of specific determinants, according to which health inequalities are caused by lifestyles and a propensity for unhealthy behaviors, has contributed greatly to focusing scholars’ attention on social contexts, believed to influence an individual's inclination/exposure to risk, and therefore, health inequalities. Nevertheless, the theory of the social determinants of health provides a very rigid representation of the factors responsible for health, which are placed in categories with varying levels of centrality. In short, the theory sets out a hierarchy that goes from the general to the particular, with the more external layers (socio-cultural conditions and environmental context) influencing the internal layers (genetic and biological factors), but not vice versa. Reciprocal influences among the factors are excluded, as are interactions among the processes that put subjects at risk or protect them. The adopted explicative model is linear, reductionist, and based on a cause-and-effect relationship. However, today we know that interactions between the body, individual, and society are difficult to reconcile with a deterministic view of social inequalities in health; hence, there appears to be an urgent need to formulate hypotheses and develop approaches based on complex strategies regarding the construction of reality. This article sets out a pathway that, starting from the theory of the social determinants of health, goes on to show the necessity of a socio-constructivist approach supported by information and communication technologies. Moreover, it outlines the preconditions of a culture – and communication-based intervention model that can aid institutions in making choices in the field of social architecture that can reduce health inequalities.
一个人的社会状况与他/她的预期寿命和感染疾病的可能性之间的联系已得到证实。事实上,大量科学证据表明,特别是社会不平等是危害健康的主要"原因"。具体决定因素理论认为,健康不平等是由生活方式和不健康行为的倾向造成的,这一理论的解释极大地促进了学者们将注意力集中在社会背景上,因为社会背景被认为会影响个人的风险倾向/暴露程度,因此也会影响健康不平等。然而,健康的社会决定因素理论对负责健康的因素提供了非常严格的表述,这些因素被按不同的中心程度分类。简而言之,该理论提出了一个从一般到特殊的层次结构,更多的外部层次(社会文化条件和环境背景)影响内部层次(遗传和生物因素),但反之亦然。排除了各因素之间的相互影响,以及使受试者处于危险或保护他们的过程之间的相互作用。所采用的解释模型是线性的,简化的,基于因果关系。然而,今天我们知道,身体、个人和社会之间的相互作用很难与健康方面社会不平等的确定性观点相协调;因此,似乎迫切需要在构建现实的复杂策略的基础上制定假设和发展方法。本文提出了一条途径,从健康的社会决定因素理论出发,继续表明有必要采用一种由信息和通信技术支持的社会建构主义方法。此外,它还概述了以文化和交流为基础的干预模式的先决条件,这种模式可以帮助各机构在社会结构领域做出选择,从而减少卫生不平等。
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引用次数: 5
Mitochondrial replacement therapy and parenthood 线粒体替代疗法和亲子关系
Q1 Arts and Humanities Pub Date : 2015-07-17 DOI: 10.1080/11287462.2015.1066082
M. Garasic, D. Sperling
The year 2015 has been a decisive year for the future of mitochondrial replacement therapy (MRT) – at least in the Western world. Currently, the UK and the US governments are undergoing a process of ethical and scientific evaluation of the technique to decide whether to allow its implementation or not. MRT requires the fusion of the DNA of three parents (although of a minimal percentage in the case of one of the two female genitors) into an embryo – and this creates a number of worries as to what this scientific innovation will lead to. These worries might be well placed and worthy of consideration, but not on the grounds presented by some opponents. In this paper, we will analyse a recent European Union (EU) petition that urged the UK government (but which could be applied to the US government as well) to refrain from legalising MRT, stressing that other techniques, such as preimplantation genetic diagnosis (PGD), already have a more direct eugenic potential than MRT. Although the UK Parliament recently voted in favour of MRT, an analysis of the EU petition can nonetheless still contribute to understanding some of the key aspects of the debate. Our conclusion is that what seems to be really at stake, instead, is whether or not we are willing to reconceptualise our notion of parenthood as something not necessarily binominal and genetically related.
对于线粒体替代疗法(MRT)的未来来说,2015年是决定性的一年——至少在西方世界是这样。目前,英国和美国政府正在对这项技术进行伦理和科学评估,以决定是否允许实施。MRT需要将三个父母的DNA融合到一个胚胎中(尽管对于两个女性祖先中的一个来说,这一比例很小),这就产生了许多关于这一科学创新将导致什么的担忧。这些担忧可能是有道理的,值得考虑,但不是基于一些反对者提出的理由。在本文中,我们将分析最近欧盟(EU)的一份请愿书,该请愿书敦促英国政府(但也可以适用于美国政府)避免将MRT合法化,并强调其他技术,如植入前遗传学诊断(PGD),已经比MRT具有更直接的优生潜力。尽管英国议会最近投票支持MRT,但对欧盟请愿书的分析仍然有助于理解这场辩论的一些关键方面。我们的结论是,真正关键的似乎是,我们是否愿意重新定义父母的概念,认为它不一定是二项和基因相关的。
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引用次数: 9
The rediscovery of Potterian bioethics 波特生命伦理学的重新发现
Q1 Arts and Humanities Pub Date : 2015-05-05 DOI: 10.1080/11287462.2015.1034472
Teodoro Brescia
In 1927, Fritz Jahr coined the term “bioethics” to indicate an “environmental ethics based on biopsychics”. In 1970, Van Rensselaer Potter (without knowing Jahr) also coined the term “bioethics” to indicate a “new global ethics based on biology”. As the same Potter wrote, after 1971 “in the USA there was an immediate explosion of the use of the word bioethics” but with a completely different meaning which became dominant and spread worldwide. He went on to say, “their [the public's] image of bioethics delayed the [global] emergence of what now exists”. Elsewhere I have analyzed how this happened, here I analyze why.
1927年,弗里茨·雅尔创造了“生物伦理学”一词来表示“基于生物心理学的环境伦理学”。1970年,Van Rensselaer Potter(不知道Jahr)也创造了“生物伦理学”一词来表示“基于生物学的新的全球伦理学”。正如同一个波特所写的那样,1971年之后“在美国,生物伦理学这个词的使用立即出现了爆炸式增长”,但其含义完全不同,并在全球范围内占据主导地位。他接着说,“他们(公众)对生物伦理学的形象推迟了现在存在的(全球)出现。”在其他地方,我分析了这种情况是如何发生的,在这里,我分析了原因。
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引用次数: 0
Where will I plant my potatoes? Development and the power to decide 我把土豆种在哪里?发展和决定权
Q1 Arts and Humanities Pub Date : 2015-04-03 DOI: 10.1080/11287462.2015.1035525
D. Billings
“Development” all over the world has been thrust upon unwilling victims. In some cases, well-meaning researchers have tried to engage local owners in “participatory” projects where indigenous knowledge is invited to lead efforts to increase a reliable food supply and provide some of the benefits of a cash economy. Unfortunately, the clear assertions of local people, anthropologists, nongovernmental organizations, and common sense have rarely held out against the power of corporations. In this paper I look at examples, some that bring despair and others that give hope to people trying to maintain not only their identities but also their lives.
全世界的“发展”都被强加在不情愿的受害者身上。在某些情况下,善意的研究人员试图让当地所有者参与“参与式”项目,在这些项目中,土著知识被邀请来领导增加可靠粮食供应的努力,并提供现金经济的一些好处。不幸的是,当地人民、人类学家、非政府组织和常识的明确主张很少能抵挡住企业的力量。在本文中,我列举了一些例子,其中一些给人们带来绝望,另一些则给人们带来希望,这些人不仅要保持自己的身份,还要保持自己的生活。
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引用次数: 3
Urban poor, economic opportunities and sustainable development through traditional knowledge and practices 通过传统知识和做法实现城市贫困、经济机会和可持续发展
Q1 Arts and Humanities Pub Date : 2015-04-03 DOI: 10.1080/11287462.2015.1037141
S. Chaudhuri
The population of a city grows through birth as well as migration. The economy has not been able to provide employment and an income for the vast majority of rural migrants, including the urban poor. Significantly, a large number of urban poor work in the informal sector as they have less skill, less education and less capital. In many developing countries, including India, due to the fast pace of urbanization, many rural areas are gradually becoming part of urban areas, where urban amenities are lacking and open spaces, cultivable lands and water bodies remain, at least in the initial stages of urbanization. Due to growing environmental concerns, there is often a demand to preserve such open spaces to protect the environment. This provides an opportunity for some people to earn a livelihood by following traditional occupations like agriculture and thereby providing fresh vegetables for the urban population. However, these people do not enjoy some of the urban amenities and continue to be connected to the rural world through visits, remittances and social, cultural and economic networks, sometimes recruiting people from their rural areas. Thus, the indigenous, traditional knowledge of cultivation and its practice in urban areas, not only helps a group of people, the poor, to survive in urban situations but it also helps to achieve sustainable development with better environmental conditions.
城市人口的增长既通过出生也通过移民。经济无法为包括城市贫民在内的绝大多数农村移徙者提供就业和收入。值得注意的是,大量城市贫民在非正规部门工作,因为他们缺乏技能、教育和资金。在包括印度在内的许多发展中国家,由于城市化的快速发展,许多农村地区正在逐渐成为城市地区的一部分,至少在城市化的初始阶段,城市设施缺乏,开放空间、可耕地和水体仍然存在。由于环境问题日益严重,人们经常要求保留这些开放空间以保护环境。这为一些人提供了一个谋生的机会,他们可以从事农业等传统职业,从而为城市人口提供新鲜蔬菜。然而,这些人没有享受到城市的一些便利,并继续通过访问、汇款和社会、文化和经济网络与农村世界保持联系,有时还从农村地区招募人员。因此,当地的传统耕作知识及其在城市地区的实践,不仅有助于一群人,即穷人,在城市环境中生存,而且还有助于在更好的环境条件下实现可持续发展。
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引用次数: 25
The rights of indigenous peoples under international law 土著人民根据国际法享有的权利
Q1 Arts and Humanities Pub Date : 2015-04-03 DOI: 10.1080/11287462.2015.1036514
J. S. Phillips
International law guarantees rights to indigenous peoples regarding traditional lands, knowledge, cultural preservation, and human security. This paper will examine the sources of these rights and legal remedies for violations of law. Protection of indigenous peoples’ cultures and resources contribute to the protection of the global environment.
国际法保障土著人民在传统土地、知识、文化保护和人类安全方面的权利。本文将探讨这些权利的来源以及对违法行为的法律救济。保护土著人民的文化和资源有助于保护全球环境。
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引用次数: 9
Assertions of cultural autonomy: indigenous Maori knowledge in New Zealand's community-based Maungatautari Eco-island project 文化自治的主张:新西兰以社区为基础的Maungatautari生态岛项目中的土著毛利人知识
Q1 Arts and Humanities Pub Date : 2015-04-03 DOI: 10.1080/11287462.2015.1039249
Matthew Harms
This paper describes, situates and evaluates the use of indigenous knowledge by local Maori stakeholders in the Maungatautari Ecological Island Trust and project, a multi-stakeholder community-based biodiversity conservation project located on New Zealand's North Island. Local Maori groups known as Mana Whenua (subtribes with ancestral rights to certain lands) connect through ancestral and tribal ties to Maungatautari, a prominent mountain in the Waikato region and site of the project. They have with varying success asserted cultural rights and sought for inclusion of cultural protocols and indigenous knowledge. In conjunction with the pursuit of their Waitangi Treaty claim for lost land and rights, this has further (re)constructed and crystallised notions of culture and identity for them. These efforts have and will continue to provide leveraging power to Mana Whenua within the project, which enables them to implement their cultural knowledge and protocols in a “culturally safe” and inclusive multi-stakeholder partnership; accentuate their sociocultural uniqueness from other New Zealanders; and contribute on their own terms to the development of Maungatautari as a compelling ecotourism site and a globally significant biodiversity conservation reserve.
本文描述、定位和评估了Maungatautari生态岛信托和项目中当地毛利人利益相关者对土著知识的使用,这是一个位于新西兰北岛的以社区为基础的多利益相关者生物多样性保护项目。被称为Mana Whenua的当地毛利人团体(祖传对某些土地拥有权利的小部落)通过祖先和部落关系与怀卡托地区的一座著名山,也是该项目的所在地蒙加塔塔里山联系在一起。他们在维护文化权利和寻求纳入文化协议和土著知识方面取得了不同程度的成功。这与他们对失去的土地和权利的怀唐伊条约要求相结合,进一步(重新)构建和明确了他们的文化和身份概念。这些努力已经并将继续在项目中为Mana Whenua提供杠杆力量,使他们能够在“文化安全”和包容性的多利益相关者伙伴关系中实施他们的文化知识和协议;强调他们与其他新西兰人的社会文化独特性;并以自己的方式为蒙加陶里的发展做出贡献,使其成为一个引人注目的生态旅游景点和全球重要的生物多样性保护保护区。
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引用次数: 7
Space and time in West Guadalcanal: a political economy 西瓜达尔卡纳尔岛的空间和时间:政治经济学
Q1 Arts and Humanities Pub Date : 2015-04-03 DOI: 10.1080/11287462.2015.1037079
David C. Ryniker
In Guadalcanal, regular contact with European traders beginning in the early 1800s initiated a profound shift in the nature of settlement, a reconfiguration in the pattern of life and a reorientation of economic practices away from the bush and towards the coast. The Vaturanga have come to use directional markers to explain the changes they have experienced as a result of pre-colonial, colonial and post-colonial processes. These include east and west, but are more pronounced in the usage of tasi (towards the sea) and longa (towards the bush). These directions have come to represent change not only in space but in understanding time. The main issues relevant to this are land claims, rights, exchange patterns and notions of identity. The Vaturanga assert ideas about space in order to resist and alter dominant hegemonic constructions made about them by others.
在瓜达尔卡纳尔岛,从19世纪初开始,与欧洲商人的定期接触开始了定居点性质的深刻转变,生活模式的重新配置,以及经济实践的重新定位,从丛林转向海岸。瓦图兰加人已经开始使用方向标记来解释他们在殖民前、殖民和后殖民过程中所经历的变化。这些包括东方和西方,但在tasi(朝向大海)和longa(朝向丛林)的使用中更为明显。这些方向不仅代表了空间的变化,也代表了对时间的理解的变化。与此相关的主要问题是土地要求、权利、交换模式和身份概念。瓦图兰加人主张关于空间的观念是为了抵制和改变他人对他们的支配性霸权建构。
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引用次数: 1
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Global Bioethics
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