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Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data.
European Journal of Human Genetics ( IF 3.7 ) Pub Date : 2020-02-21 , DOI: 10.1038/s41431-020-0585-0
Gaia Barazzetti 1, 2 , Francesca Bosisio 1, 2 , Daria Koutaissoff 3 , Brenda Spencer 3
Affiliation  

Broad consent is increasingly recommended as an acceptable consent model for biobanking human samples and health data with a view to their future use in research. Empirical evidence on the practice of broad consent and its implementation in the hospital setting, however, is still very limited. We analyse and discuss results from a qualitative study of perceptions of a sample of patients and biobank recruiters regarding broad consent to participate in a hospital-based biobank for prospective research on genomic and health data. Our findings suggest that contextual and relational factors play an important role in the practice of broad consent, and illustrate that broad consent relies as much on intuition as on reasoning. Moreover, we show that seeking broad consent in the hospital affects patient-recruiter interaction and that "conditional" trust plays a significant role in broad-consent decision-making. In conclusion, we provide recommendations to improve patient autonomy in the context of hospital-based broad consent.

中文翻译:

实践中的广泛同意:从一家医院生物库中吸取的经验教训,用于对基因组和医学数据进行前瞻性研究。

越来越多地建议将广泛同意作为可接受的同意模型,用于对人体样本和健康数据进行生物存储,以期将来在研究中使用。但是,关于广泛同意的实践及其在医院中的实施的经验证据仍然非常有限。我们分析和讨论了定性研究结果的定性研究,该研究对患者和生物库招募人员的样本关于广泛同意参加基于医院的生物库进行基因组和健康数据前瞻性研究的看法。我们的发现表明,上下文和关系因素在广泛同意的实践中起着重要作用,并说明广泛同意不仅取决于直觉,还取决于推理。而且,我们表明,在医院寻求广泛同意会影响患者与招聘者之间的互动,并且“有条件的” 信任在广泛同意的决策中起着重要作用。总之,我们提供了在基于医院的广泛同意的背景下改善患者自主性的建议。
更新日期:2020-02-21
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