Biogenetic technologies and social transformations in kinship and relatedness in Iceland?

冰岛的生物遗传技术和亲属关系和相关性的社会变革？

• 批准号: 2222521
• 金额: --
• 依托单位: University of Sussex
• 依托单位国家: 英国
• 项目类别: Studentship
• 财政年份: 2019
• 资助国家: 英国
• 起止时间: 2019 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=studentship-2222521
• 关键词: Biogenetic; technologies; social; transformations; kinship

This research investigates how biobanking and genetic testing modify ideas of the family in Icelandic society. With the means to develop societal knowledge of disease and genomics in the Icelandic population, the national biobank deCODE can discriminate which kind of foetuses deserve a birth and integration into Icelandic society.In 2006 all Icelandic women were offered 'the combination test' - a prenatal screening technology that detects with 95% accuracy genetic abnormalities such as Down Syndrome - and has since seen the non-invasive prenatal test (NIPT) become a more efficient practise with a near 100% accuracy rate (see Halle and Fjose 2006). In 2013, deCODE collaborated with students to create the 'Islendiga App' (App of Icelanders); a dating app allowing people to see how closely they are related using an online genealogical database stretching back over 1200 years (see The Associated Press 2013). Thus, the impacts of genetic testing for Icelandic society has clearly affected the ideas of the self and family during multiple stages of the life course; an immense scenario where abortion and eugenics interlink to instil a belief in the molecular value of Icelandic culture. This is increasingly confusing considering that Iceland is often venerated for its egalitarian structure and welfare ideology, including various political groups such as The People's Party; The Social Democratic Alliance; and the Left-Green Movement who are sympathetic to the values of feminism and disability rights. The politics of biobanking and the availability of genetic practices in Iceland is a lens into societal discourses of identity and relatedness underpinned by a morality of disability. Following Carsten's (2014) idea of the proximity of kinship to science and technology, this research foregrounds a critical approach of how deCODE and wider society participate to shape particular ideologies of Icelandic culture, disability, and the family.Sociologically, implications of genetic screening and engineering has been carefully opened up with Margaret Sleeboom-Faulkner's concept of 'life assemblages' (see Sleeboom-Faulkner 2010, 2014), in a bid to question the relationship between science, technology and society. However, references to Iceland's relationships have either fixated on the history of biotechnology (see Árnason and Simpson 2003); the dynamics of gender and parental responsibility for prospective parents receiving prenatal care (see Gottfredsdóttir 2009a, 2009b); or the political debates of deCODE and property rights to biological material (see Pálsson 1999, 2002, 2011). While Gisli Palssons' insights into the political relationships of deCODE and Icelandic society are extremely useful in this regard, this research builds upon his ideas as a link to a societal question about how Icelander's can form cultural ideas of the family at a cost of harrowing a discourse of eugenics and disability. In so doing, this research revises the ideas of those with a monopoly on Icelandic ethnography with a contemporary focus on family making in Iceland with its alarming costs for a narrowing population of disabled people.The University of Sussex is a perfect institutional fit with this project: Margaret Sleeboom-Faulkner's specialisms of genomics and prenatal testing in Asia (Sleeboom-Faulkner: 2009, 2010, 2014, 2018) and Karis Petty's (2014) ideas on the ways that peoples with impaired vision experience their environment take seriously the issues of how physical and social objects obstruct and reinvigorate people's abilities to form social relations. Furthermore, the 'Centre for Cultures of Reproduction, Technologies and Health' [CORTH] shares a concern of reproductive health that is essential to this project's objective (see: http://www.sussex.ac.uk/corth/). CORTH holds an impressive record for producing truly innovate and interdisciplinary research, and this project offers to complement its achievements to the field as a whole.

这项研究调查了生物银行和基因检测如何改变冰岛社会的家庭观念。有了在冰岛人口中发展疾病和基因组学社会知识的手段，国家生物库deCODE可以辨别哪种胎儿应该出生并融入冰岛社会。2006年，所有冰岛妇女都接受了“组合测试”--一种产前筛查技术，可以95%的准确率检测出唐氏综合症等遗传异常--从那以后，侵入性产前检查（NIPT）成为一种更有效实践，准确率接近100%（参见Halle和Fjose 2006）。2013年，deCODE与学生合作创建了“Islendiga应用程序”（冰岛人的应用程序）;这是一个约会应用程序，允许人们使用在线家谱数据库查看他们之间的关系有多密切，该数据库可以追溯到1200多年前（见美联社2013）。因此，基因检测对冰岛社会的影响显然影响了生命过程多个阶段的自我和家庭观念;堕胎和优生学相互联系，灌输对冰岛文化分子价值的信念。考虑到冰岛经常因其平等主义结构和福利意识形态而受到尊敬，包括各种政治团体，如人民党;社会民主联盟;和左翼绿色运动，他们同情女权主义和残疾人权利的价值观，这越来越令人困惑。冰岛的生物库政治和遗传实践的可用性是一个透镜，可以看到以残疾道德为基础的身份和相关性的社会话语。根据Carsten（2014）关于亲属关系与科学和技术接近的想法，这项研究突出了一种批判性的方法，即deCODE和更广泛的社会如何参与塑造冰岛文化，残疾和家庭的特定意识形态。玛格丽特·斯利布姆-福克纳的“生命集合”概念仔细地揭示了基因筛选和工程的含义（参见Sleeboom-Faulkner 2010，2014），试图质疑科学，技术和社会之间的关系。然而，提到冰岛的关系时，要么关注生物技术的历史（见Árnason和Simpson，2003年）;性别动态和接受产前护理的准父母的父母责任（见Gottfredsdóttir，2009年a，2009年b）;要么关注deCODE和生物材料产权的政治辩论（见Pálsson，1999年，2002年，2011年）。虽然Gisli Palssons对deCODE和冰岛社会的政治关系的见解在这方面非常有用，但这项研究建立在他的想法基础上，将其作为一个社会问题的联系，即冰岛人如何以痛苦的优生学和残疾话语为代价来形成家庭的文化观念。在这样做的过程中，这项研究修正了那些垄断冰岛民族志的人的想法，并将当代的重点放在冰岛的家庭建设上，以及为缩小残疾人人口所付出的惊人代价。苏塞克斯大学是这个项目的完美机构：玛格丽特·斯利布姆-福克纳在亚洲的基因组学和产前检测方面的专长（Sleeboom-Faulkner：2009，2010，2014，2018）和卡里斯佩蒂（2014）关于视力受损的人体验环境的方式的想法认真对待物理和社会对象如何阻碍和重振人们形成社会关系的能力的问题。此外，“生殖、技术和健康文化中心”也关注生殖健康，这对实现该项目的目标至关重要（见http：//www.sussex.ac.uk/corth/）。CORTH在产生真正的创新和跨学科研究方面拥有令人印象深刻的记录，该项目提供了对整个领域成就的补充。