权益分类	功能权益	普通用户	{{item.name}}会员
{{category.name}}	{{benefitItem.name}}

Carriers: genetic knowledge and the emergence of a new biosocial identity

载体：遗传知识和新的生物社会身份的出现

基本信息

批准号：
275165774
负责人：
Privatdozent Dr. Peter Wehling
金额：
--
依托单位：
Professur für Soziologie mit dem Schwerpunkt Biotechnologie, Natur und Gesellschaft
依托单位国家：
德国
项目类别：
Research Grants
财政年份：
2015
资助国家：
德国
起止时间：
2014-12-31 至 2019-12-31
项目状态：
已结题

来源：
https://gepris.dfg.de/gepris/projekt/275165774?language=en
关键词：
Carriers genetic knowledge emergence new

项目摘要

The research project focuses on the social contexts, implications and effects of expanded carrier screening (ECS), a genetic technology which emerged in recent years. ECS aims at providing couples, who wish to have children, with information, ideally prior to a pregnancy, whether both of them carry the genetic variant for the same recessively inheritable and usually rare condition, which means that both of them are „carriers“. In this case each child of the couple would have a 25 percent chance of inheriting the disease-related variant from both parents, whereas the carriers themselves are asymptomatic and not at risk of being affected by the condition. Given the fact that almost all humans are held to be carriers of at least one recessive genetic variant, the whole population becomes the target group of ECS.ECS has been developed by commercial laboratories and, since 2009, is offered directly to consumers via the internet. In the project it was analysed how the emerging social category of carriers is shaped by ascribing specific risks, responsibilities and agency to them in commercial marketing as well as in medical and bioethical discourse. In addition, it was investigated to what extent such framings are adopted, modified or rejected in self-interpretations of individuals or couples. There is evidence that the fact of being a putative carrier is rarely understood in terms of an identity but rather linked to assuming highly gendered and subjectifying responsibilities which are held to result from carrier status. However, the aim of testing individuals or couples who are asymptomatic and do not have a family history of genetic disease even prior to pregnancy to date appears to meet a lack of interest among the target group. Therefore, strategies of „successfully“ motivating the target group are crucial both for the uptake of ECS and its social effects.The need for additional research results from two recent developments which both are able to substantially transform the current market-based features of ECS. Both the international debates on „responsible“ and „successful implementation“ of ECS in public health services which have started around 2015 and the simultaneous tendencies and efforts to combine carrier screening with other reproductive or genetic technologies are likely to produce novel forms of targeted communication, responsibilisation and gender asymmetries. Analysing these developments will therefore add to and complement the project’s research focus in a crucial manner. Moreover, it will also provide important insights for discussions on the implementation of ECS which might come up in the near future in Germany as well.

该研究项目的重点是社会背景，扩大载体筛选（ECS）的影响和效果，这是近年来出现的一种遗传技术。ECS旨在为希望生育子女的夫妇提供信息，最好是在怀孕之前，他们是否都携带相同的可遗传和通常罕见的遗传变异，这意味着他们都是“携带者”。在这种情况下，这对夫妇的每个孩子都有25%的机会从父母双方继承与疾病相关的变异，而携带者本身没有症状，没有受到这种疾病影响的风险。鉴于几乎所有人都被认为是至少一种隐性遗传变异的携带者，整个人群成为ECS的目标群体。ECS由商业实验室开发，自2009年以来，通过互联网直接向消费者提供。在该项目中，分析了在商业营销以及医学和生物伦理学讨论中，如何通过将具体风险、责任和代理权赋予新出现的携带者社会类别。此外，它是调查在何种程度上，这种框架被采用，修改或拒绝在自我解释的个人或夫妇。有证据表明，人们很少从身份的角度来理解作为推定承运人的事实，而是将其与承担高度性别化和主观化的责任联系在一起，而这些责任被认为是承运人身份造成的。然而，对无症状、甚至在怀孕前也没有遗传病家族史的个人或夫妇进行检测的目的似乎在目标群体中缺乏兴趣。因此，“成功地”激励目标群体的战略是至关重要的，无论是吸收ECS和其社会效应。需要额外的研究结果，从两个最近的发展，这两个都能够大大改变目前的ECS的市场为基础的功能。2015年左右开始的关于在公共卫生服务中“负责任”和“成功实施”ECS的国际辩论，以及同时将联合收割机携带者筛查与其他生殖或遗传技术相结合的趋势和努力，都可能产生新形式的有针对性的沟通，责任和性别不对称。因此，分析这些发展将以至关重要的方式增加和补充该项目的研究重点。此外，它还将为不久的将来可能在德国举行的关于执行环境控制系统的讨论提供重要的见解。