Romano Virginia, Milne Richard, Mascalzoni Deborah
Center for Research, Ethics and Bioethics, Uppsala University, Uppsala, Sweden, SE-751 05, Sweden.
Medical Ethics, Lund University, Lund, Sweden, 22362, Sweden.
Wellcome Open Res. 2021 Jul 12;6:180. doi: 10.12688/wellcomeopenres.16909.1. eCollection 2021.
: The collection and sharing of genomic and health data underpins global efforts to develop genomic medicine services. 'Your DNA, Your Say' is a cross-sectional survey with the goal of gathering lay public attitudes toward the access and sharing of deoxyribonucleic acid (DNA) information and medical information. It suggests significant international variation in the willingness to share information, and in trust in the actors associated with the collection and use of this information. This paper explores these questions in the Italian context. : The Italian Your DNA, Your Say campaign led to the collection of 1229 valid questionnaires. The sample was analysed using standard descriptive statistics. We described the sample in terms of gender, age ranges and self-reported religiosity, and split the sample amongst the five typically studied Italian macro-areas to explore regional variation. We analysed the relationship between these factors and trust and willingness to share medical and DNA information. : The majority of the sample, across all socio-demographics, were willing to share DNA and health information with all entities considered except for-profit researchers. Respondents tended not to trust institutions beyond their own doctor. There was no difference between Italian regions. : Despite the generally positive attitude towards sharing, we suggest that the lack of trust in non-profit researchers and the government needs to be better understood to inform public communication projects around genomics in the future and to enhance awareness of DNA and medical information in Italy.
基因组和健康数据的收集与共享是全球发展基因组医学服务努力的基础。“你的DNA,你做主”是一项横断面调查,旨在收集普通公众对脱氧核糖核酸(DNA)信息和医疗信息的获取与共享的态度。调查表明,在信息共享意愿以及对与这些信息的收集和使用相关的行为者的信任方面,存在显著的国际差异。本文在意大利背景下探讨这些问题。
意大利的“你的DNA,你做主”活动共收集到1229份有效问卷。使用标准描述性统计方法对样本进行了分析。我们从性别、年龄范围和自我报告的宗教信仰等方面描述了样本,并将样本划分到五个典型的意大利大区域,以探讨区域差异。我们分析了这些因素与信任以及共享医疗和DNA信息意愿之间的关系。
在所有社会人口统计学特征方面,样本中的大多数人愿意与除营利性研究人员之外的所有被考虑的实体共享DNA和健康信息。受访者往往不信任自己医生以外的机构。意大利各地区之间没有差异。
尽管总体上对共享持积极态度,但我们认为,对非营利性研究人员和政府缺乏信任的问题需要得到更好的理解,以便为未来围绕基因组学的公众宣传项目提供参考,并提高意大利民众对DNA和医疗信息的认识。
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