在不断变化的社会技术基因组数据环境中,后鉴定性
Kaya Akyüz1,2, Melanie Goisauf1,2, Gauthier Chassang3,4
1Department of Science and Technology Studies, University of Vienna, Universitätsstraße 7/Stiege II/6, Stock (NIG), 1010 Vienna, Austria.
BioSocieties
|June 26, 2023
概括
基因组数据的可识别性带来了超越个人隐私的复杂挑战. 赫拉基因组案例揭示了需要一个新的概念",后鉴定性",以了解不断变化的基因组数据风险.
科学领域:
- 生物医学研究的研究.
- 基因组数据科学是基因组数据科学.
- 社会技术社会技术.
背景情况:
- 生物医学研究数据实践往往假定规范性隐私标准,并要求"道德工作".
- 研究的日益增长的数据化,特别是基因组数据,为识别带来了新的时间和空间维度.
- 现有的框架努力解决在后基因组时代识别的复杂性质.
研究的目的:
- 通过使用有争议的HeLa细胞系基因组出版物,分析基因组鉴定性作为数据问题.
- 探索大数据,多种基因组应用 (生物医学,娱乐,研究) 和社会技术转变对识别能力的影响.
- 提出一种新的概念,即"后识别性",以应对当代基因组数据的挑战.
主要方法:
- 对HeLa细胞系基因组出版物的案例研究分析.
- 检查社会技术和数据环境的发展 (大数据,基因组学).
- 在后基因组时代对可识别性的概念分析.
主要成果:
- 基因组识别风险并不仅仅是HeLa争议,而是代表了一个系统的数据问题.
- 赫拉案例说明了过去的假设和未来的可能性如何融合到基因组识别中.
- "后鉴定性"的概念捕捉了基因组鉴定性的社会技术情况.
结论:
- 为了理解基因组数据的风险,需要对"后鉴定性"进行新的概念化.
- 亲属关系,暂时性和开放性需要根据基因组数据识别和地位的不断变化的理解重新谈判.
- 该研究强调需要更新框架来管理基因组研究中的隐私和伦理考虑.
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