Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.
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DOI：
10.1186/s13073-021-00903-0
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发表时间：
2021-05-25
期刊：
影响因子：
12.3
通讯作者：
Middleton A
中科院分区：
文献类型：
--
作者：
Milne R;Morley KI;Almarri MA;Anwer S;Atutornu J;Baranova EE;Bevan P;Cerezo M;Cong Y;Costa A;Critchley C;Fernow J;Goodhand P;Hasan Q;Hibino A;Houeland G;Howard HC;Hussain SZ;Malmgren CI;Izhevskaya VL;Jędrzejak A;Jinhong C;Kimura M;Kleiderman E;Leach B;Liu K;Mascalzoni D;Mendes Á;Minari J;Nicol D;Niemiec E;Patch C;Pollard J;Prainsack B;Rivière M;Robarts L;Roberts J;Romano V;Sheerah HA;Smith J;Soulier A;Steed C;Stefànsdóttir V;Tandre C;Thorogood A;Voigt TH;Wang N;West AV;Yoshizawa G;Middleton A
公众信任是收集基因组和健康数据以及基因组研究可持续性的核心。为了赢得信任，那些参与收集和共享数据的人需要证明他们是值得信赖的。然而，尚不清楚哪些措施最有可能证明这一点。我们分析了“你的DNA，你的发言权”关于基因组数据共享的公众观点的在线调查，包括来自22个低收入，中等收入和高收入国家的36，268人的回复，以15种语言收集。我们研究了参与者如何看待措施的相对价值，以证明那些使用捐赠的DNA和/或医疗信息的可信度。我们研究国家间的变化，并提出了一个综合排名的措施。提供关于谁将从数据访问中受益的透明信息是增加信任的最重要措施，得到了22个国家中20个国家超过50%的参与者的支持。其次是撤回数据的选项，以及谁在使用数据以及为什么使用数据的透明度。发现措施的重要性存在差异，特别是关于滥用数据的制裁信息-在印度有5%的人认可，但在日本几乎有60%。聚类分析表明，一些国家在评估具体措施时保持一致，如联合王国和加拿大、西班牙和墨西哥、葡萄牙和巴西。中国和俄罗斯在所提出的措施的价值方面与其他国家的关系不那么密切。我们的研究结果强调了数据使用透明度的重要性，以及与数据共享相关的目标和潜在利益的重要性，包括这些利益的产生者。它们表明，公众重视了解使用数据会带来什么好处。该研究强调了随着全球基因组数据共享的继续，当地敏感措施对增加信任的重要性。在线版本包含补充材料，可通过10.1186/s13073-021-00903-0获得。
Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally. The online version contains supplementary material available at 10.1186/s13073-021-00903-0.
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影响因子：
5.2
作者：
Staunton, Ciara;Slokenberga, Santa;Mascalzoni, Deborah
通讯作者：
Mascalzoni, Deborah
DOI：
10.1038/s41576-020-0257-5
发表时间：
2020-10
期刊：
Nature reviews. Genetics
影响因子：
--
作者：
Byrd JB;Greene AC;Prasad DV;Jiang X;Greene CS
通讯作者：
Greene CS
影响因子：
5.3
作者：
Milne, Richard;Morley, Katherine I.;Middleton, Anna
通讯作者：
Middleton, Anna
DOI：
10.1080/15265161.2018.1431322
发表时间：
2018-04
期刊：
The American journal of bioethics : AJOB
影响因子：
--
作者：
Kraft SA;Cho MK;Gillespie K;Halley M;Varsava N;Ormond KE;Luft HS;Wilfond BS;Soo-Jin Lee S
通讯作者：
Soo-Jin Lee S
影响因子：
4.1
作者：
Dheensa S;Samuel G;Lucassen AM;Farsides B
通讯作者：
Farsides B