南亚基于遗传信息的歧视:对宪法和相关法律的探索性研究

Akash, S. Sarker
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引用次数: 0

摘要

精准医疗的进步导致基因组技术在全球范围内普及。这引起了人们对基因数据共享和隐私伦理的关注。本文聚焦南亚,首先旨在识别、分析和理解该地区与基因数据隐私权和歧视相关的法律、法规和政策。本文通过对现有的隐私权法律和政策进行定性研究,以及对从孟加拉国、不丹、印度、马尔代夫、尼泊尔、巴基斯坦和斯里兰卡等七个司法管辖区收集的立法进行理论分析来实现这一目标。在介绍了针对具体国家的研究之后,文章转而讨论了研究结果,结果表明,该地区缺乏专门针对个人基因数据保护的国家规范和区域政策。然后,文章提出了造成这种结果的可能原因,并建议这些国家必须制定对文化敏感的法规和普遍适用的遗传隐私权法律原则,尽管目前存在贫穷、人口结构不统一和缺乏政治意愿等挑战。
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Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws
The progress in precision medicine has resulted in genomic technology spreading worldwide. This has raised concerns about the ethics of genetic data sharing and privacy. This article focuses on South Asia and first aims to identify, analyze, and understand the laws, regulations, and policies related to genetic data privacy and discrimination in that region. This is accomplished through a qualitative examination of existing laws and policies on privacy rights and a doctrinal analysis of legislation gathered from seven jurisdictions, viz. Bangladesh, Bhutan, India, the Maldives, Nepal, Pakistan, and Sri Lanka. Following the presentation of the country-specific study, the article turns to discussing the study's results, which suggest that the area lacks both national norms and a regional policy specific to the protection of personal genetic data. The article then offers possible reasons for this outcome and suggests that the countries must formulate culturally sensitive regulations and universally applicable legal principles for genetic privacy notwithstanding the existing challenges of poverty, non-uniform demographics, and an absence of political will.
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