Department of Public Health and Monitoring, Cancer Center, Sciensano, Brussels, Belgium.
Health Expect. 2021 Apr;24(2):468-477. doi: 10.1111/hex.13187. Epub 2021 Jan 16.
The development of large data sets, including genomic data, coupled with rapid advances in personalized medicine where citizens increasingly face complex choices about the use of their genomic information implies that citizens are essential stakeholders in genomics. They should be engaged in the ethical, legal and societal issues to produce a framework that fosters trust and allows them to guide the technology based on their values.
This article highlights that citizens' conceptions of the human genome inform about and make sense of their main values regarding the use of genomic information, which is critical for policymakers, experts and stakeholders to understand to maintain the public support in genomics.
Through an inductive thematic approach, we reanalysed data collected for the Belgian citizen forum, which aimed to produce recommendations for the Ministry of Public Health and other stakeholders.
Citizens expressed four conceptions of the genome that determined which uses of genomic information they supported: the most intimate part of individuals; 'I am more than my genome'; the individual's property vs the common good; and uncertainty and fear.
Diversity in their conceptions reveals remaining conflicts of values among citizens, mainly regarding a conception of the genome as an individual property or a common good. However, despite differing conceptions, shared values emerged such as solidarity, privacy, no genetic discrimination and the right to an open future, where individual and common interests coexist.
The panel of the citizen forum consisted of 32 citizens.
大型数据集的发展，包括基因组数据，加上个性化医疗的快速发展，使公民越来越多地面临关于使用其基因组信息的复杂选择，这意味着公民是基因组学的重要利益相关者。他们应该参与到伦理、法律和社会问题中，制定一个框架，以促进信任，并使他们能够根据自己的价值观来引导技术。
本文强调了公民对人类基因组的概念，这些概念为他们提供了有关使用基因组信息的主要价值观的信息和意义，这对于政策制定者、专家和利益相关者来说是至关重要的，以维持公众对基因组学的支持。
通过一种归纳主题的方法，我们重新分析了为比利时公民论坛收集的数据，该论坛旨在为公共卫生部门和其他利益相关者提供建议。
公民表达了四种对基因组的概念，这决定了他们支持哪些使用基因组信息：个体最私密的部分；“我不仅仅是我的基因组”；个人的财产与共同利益；以及不确定性和恐惧。
他们对基因组概念的多样性揭示了公民之间仍然存在的价值观冲突，主要涉及将基因组视为个人财产还是共同利益。然而，尽管存在不同的概念，也出现了一些共同的价值观，如团结、隐私、没有基因歧视和开放未来的权利，在这些价值观中，个人和共同利益共存。
公民论坛的小组由 32 名公民组成。
