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The Belgian DNA Debate: An Online Deliberative Platform on the Ethical, Legal, and Social Issues of Genomics
Public Health Genomics ( IF 1.3 ) Pub Date : 2021-05-05 , DOI: 10.1159/000515356
Chloé Mayeur 1 , Marlies Saelaert 1 , Wannes Van Hoof 1
Affiliation  

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.
Public Health Genomics


中文翻译:

比利时 DNA 辩论:关于基因组学伦理、法律和社会问题的在线协商平台

简介:基因组学越来越多地在社会中实施。为了充分实现这一实施,应该就他们对基因组学及其相关伦理、法律和社会问题 (ELSI) 的看法咨询公民,使他们能够与专家共同创建一个社会支持的基因组学框架。方法:组织了一场比利时在线 DNA 辩论,其中 1,127 名公民为其审议平台做出了贡献。结果:贡献者在 5 个主要主题中对基因组信息的社会使用表达了双重态度。首先,贡献者认为 DNA 对身份具有显着但不确定的影响。第二个主题描述了基因组信息如何指导人们的行为,但会产生不利影响,例如心理困扰。第三个主题涉及基于基因组学的责任与拒绝基因歧视之间的紧张关系。第四个主题描述了基因组信息如何对公共利益和整个社会有用,但无论如何,人们应该如何自由选择使用这些信息。在第五个主题中,贡献者表示愿意分享他们的数据,并警告这可能导致的伤害和滥用。最后,讨论和结论:贡献者对基因组信息及其 ELSI 的社会使用的态度与软预防方法一致,其中谨慎和权衡不同的价值应该导致针对潜在风险和危害的保护措施。基因组学的进一步社会实施应包括这些价值观和关注点。
公共卫生基因组学
更新日期:2021-05-05
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