Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.
Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.
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DOI：
10.1038/s41431-021-00997-5
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发表时间：
2022-03
期刊：
影响因子：
--
通讯作者：
Otten S
中科院分区：
文献类型：
--
作者：
Broekstra R;Aris-Meijer JL;Maeckelberghe ELM;Stolk RP;Otten S
数据存储库，如研究生物银行，寻求优化响应参与者的数量，同时试图增加每个参与者捐赠的数据量。这些努力的目的是增加储存库在医学研究中的使用价值，以促进改善保健，特别是在参与者允许数据连接的情况下。我们调查了个人参与这些项目的动机，以及他们退出基于人口的生物库的潜在原因。此外，我们还分析了这些动机与参与者的各种特征以及他们是否愿意将数据链接到他们的个人数据进行研究。这些问题进行了探讨，使用荷兰生命线生物银行（n = 2615）的参与者的样本。研究结果表明，参与和退出的动机取决于对社会和个人本身的利益或危害。虽然一般的价值观和信任都发挥了关键作用，参与，潜在的退出和愿意允许数据链接，他们是不同的参与和退出的动机。这些研究结果通过强调参与或退出数据捐赠决策的独特性和复杂性来支持和细微差别先前的研究结果。我们提出了一些新的方向，以改善招聘，保留和保障生物库的战略。此外，我们的数据提供了初步的证据，有关因素如何可能与个人同意数据联系的概率，当控制其独特的影响。未来的研究应进一步调查如何损害和利益的看法可能会影响决策退出参与。
Data repositories, like research biobanks, seek to optimise the number of responding participants while simultaneously attempting to increase the amount of data donated per participant. Such efforts aim to increase the repository’s value for its uses in medical research to contribute to improve health care, especially when data linkage is permitted by participants. We investigated individuals’ motives for participating in such projects and potential reasons for their withdrawal from participation in a population-based biobank. In addition, we analysed how these motives were related to various characteristics of the participants and their willingness to permit data linkage to their personal data for research. These questions were explored using a sample of participants in the Dutch Lifelines biobank (n = 2615). Our results indicated that motives for participation and withdrawal were premised on benefits or harm to society and to the individuals themselves. Although general values and trust both played key roles in participation, potential withdrawal and willingness to permit data linkage, they were differentially associated with motives for participation and withdrawal. These findings support and nuance previous findings by highlighting the distinctiveness and complexity of decision making regarding participation in or withdrawal from data donation. We suggest some new directions for improving recruitment, retention and safeguarding strategies in biobanking. In addition, our data provide initial evidence regarding how factors may relate with the probability that individuals will agree to data linkages, when controlling for their unique effects. Future research should further investigate how perceptions of harm and benefits may influence decision making on withdrawal of participation.
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影响因子：
2.7
作者：
Aitken M;de St Jorre J;Pagliari C;Jepson R;Cunningham-Burley S
通讯作者：
Cunningham-Burley S
影响因子：
4.4
作者：
Critchley, Christine R.;Nicol, Dianne;Stranger, Mark J. A.
通讯作者：
Stranger, Mark J. A.
影响因子：
4.1
作者：
Critchley, Christine;Nicol, Dianne;McWhirter, Rebekah
通讯作者：
McWhirter, Rebekah
影响因子：
--
作者：
Johnsson, Linus;Hansson, Mats G.;Helgesson, Gert
通讯作者：
Helgesson, Gert
影响因子：
1.6
作者：
Hewitt, Robert;Watson, Peter
通讯作者：
Watson, Peter