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比利时 DNA 辩论:一个关于基因组学伦理、法律和社会问题的在线审议平台。

The Belgian DNA Debate: An Online Deliberative Platform on the Ethical, Legal, and Social Issues of Genomics.

机构信息

Cancer Centre, Sciensano, Brussels, Belgium.

出版信息

Public Health Genomics. 2021;24(3-4):149-159. doi: 10.1159/000515356. Epub 2021 May 5.

DOI:10.1159/000515356
PMID:33951658
Abstract

INTRODUCTION

Genomics is increasingly being implemented in the society. To fully realise this implementation, citizens should be consulted about their perspectives on genomics and its associated ethical, legal, and social issues (ELSI) to enable them to co-create with experts a society-supported framework in genomics.

METHODS

A Belgian online DNA debate was organised, where 1,127 citizens contributed to its deliberative platform.

RESULTS

Contributors expressed a dual attitude towards the societal use of genomic information throughout 5 main themes. Firstly, contributors considered DNA to have a significant but nondeterministic impact on identity. The second theme describes how genomic information may guide people's behaviour but has unfavourable effects such as psychological distress. The third theme covers the tension between a genomics-based responsibility and the rejection of genetic discrimination. The fourth theme depicts how genomic information may be useful for the common good and society at large but how, nevertheless, it should be people's free choice to use this information. In the fifth theme, contributors expressed both willingness to share their data and caution towards the harm and abuses this may engender. Finally, contributors formulated some recommendations for the responsible implementation of genomics.

DISCUSSION AND CONCLUSION

The attitude of contributors towards the societal use of genomic information and its ELSI aligns with a soft precautionary approach, in which prudence and the weighing of different values should result in protective measures against potential risks and harms. Further societal implementation of genomics should include these values and concerns.

摘要

简介

基因组学在社会中的应用日益广泛。为了充分实现这一应用,应该就民众对基因组学及其相关伦理、法律和社会问题(ELSI)的看法征求意见,使他们能够与专家共同制定一个得到社会支持的基因组学框架。

方法

在比利时组织了一次在线 DNA 辩论,有 1127 名公民参与了该辩论的审议平台。

结果

参与者通过 5 个主要主题表达了他们对社会使用基因组信息的双重态度。首先,参与者认为 DNA 对身份有重大但非决定性的影响。第二个主题描述了基因组信息如何指导人们的行为,但会产生心理困扰等不利影响。第三个主题涵盖了基于基因组的责任与拒绝遗传歧视之间的紧张关系。第四个主题描绘了基因组信息如何有益于共同利益和整个社会,但人们应该有自由选择使用这些信息的权利。在第五个主题中,参与者既表示愿意分享他们的数据,又对可能产生的伤害和滥用表示警惕。最后,参与者为负责任地实施基因组学提出了一些建议。

讨论与结论

参与者对社会使用基因组信息及其 ELSI 的态度符合软谨慎方法,即谨慎和权衡不同的价值观应导致采取保护措施,以防范潜在的风险和危害。进一步实施基因组学应该考虑到这些价值观和关切。

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