Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
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DOI：
10.1007/s00439-019-02062-0
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发表时间：
2019-12-01
期刊：
影响因子：
5.3
通讯作者：
Middleton, Anna
中科院分区：
文献类型：
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作者：
Milne, Richard;Morley, Katherine I.;Middleton, Anna
信任在塑造公众对遗传学的态度以及参与基因组学研究和大数据计划的意图方面可能很重要。因此，我们研究了公众对数据共享的信任。一项横断面在线调查收集了来自美国、加拿大、英国和澳大利亚（n = 8967）代表性公众的回复。参与者最有可能信任他们的医生，而不太可能信任其他被命名的实体。公司研究人员最不可能被信任。使用潜在类别分析定义低、可变和高信任类别。高信任阶层的成员更有可能是50岁以下，男性，有孩子，有宗教信仰，有遗传学的个人经验，来自美国。他们最有可能愿意捐赠他们的基因组和健康数据用于临床和研究用途。低信任阶层比其他受访者更不放心防止利用捐赠信息的法律。信任的变化，它与基因组数据的使用和潜在的立法关注领域的关系被认为是。这些发现对于扩大基因组医学和数据共享的努力具有相关性，而不仅仅是那些具有遗传学或研究参与者个人经验的人。
Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.