Mayeur Chloé, Mertes Heidi, Van Hoof Wannes
Sciensano, Ixelles, Belgium.
Ghent University, Ghent, Belgium.
Humanit Soc Sci Commun. 2023;10(1):83. doi: 10.1057/s41599-023-01580-7. Epub 2023 Mar 4.
Since genomics is becoming commonplace in healthcare for the diagnosis, treatment, and prevention, the prospect of generating a genomic passport for all citizens is gaining traction. While this would have many advantages, it raises ethical issues requiring societal debate alongside academic reflection. Hence, Sciensano-the Belgian scientific Institute of Public Health-organised an online citizen engagement on genomic information usage, including a question on a genomic passport for all. The inductive thematic analysis of participants' contributions highlighted vulnerability as a fundamental concern, while this has not received sufficient attention so far in genomics. Participants expressed their vulnerability in two ways. First, the genomic passport would inform them about their ontological vulnerability. By revealing their constitutional weaknesses (predisposition to diseases), it reminds them that everyone is unavoidably and perennially at risk of being harmed. Second, the misuse of the genomic passport can add situational vulnerabilities (e.g., discrimination causing psychological and economic harm). Moreover, the fundamental uncertainty in genomics-how will such sensitive information be used, and how will the science evolve?-exacerbates these vulnerabilities. This article ends with recommendations to alleviate these vulnerabilities in genomics now and in the future in which the genomic passport may become a reality.
由于基因组学在医疗保健领域用于诊断、治疗和预防正变得越来越普遍,为所有公民生成基因组护照的前景越来越受到关注。虽然这将带来许多好处,但它也引发了伦理问题,需要社会辩论以及学术思考。因此,比利时公共卫生科学研究所Sciensano组织了一次关于基因组信息使用的在线公民参与活动,其中包括一个关于为所有人发放基因组护照的问题。对参与者贡献的归纳主题分析突出了脆弱性这一基本问题,而这在基因组学领域迄今为止尚未得到足够的关注。参与者通过两种方式表达了他们的脆弱性。首先,基因组护照会让他们了解自己在本体论上的脆弱性。通过揭示他们的体质弱点(对疾病的易感性),它提醒他们每个人都不可避免且长期面临受到伤害的风险。其次,基因组护照的滥用会增加情境性脆弱性(例如,歧视导致心理和经济伤害)。此外,基因组学中的根本不确定性——这些敏感信息将如何被使用,以及科学将如何发展——加剧了这些脆弱性。本文最后提出了一些建议,以减轻基因组学领域现在以及未来基因组护照可能成为现实时的这些脆弱性。