■发展科学中的数据共享越来越受到鼓励,由开放数据访问的资助者和发布者授权支持。数据共享可以加速发现,将具有高质量分析专业知识的研究人员与具有大型数据集的研究人员联系起来,并使研究环境民主化,以使资金有限的研究人员能够访问大样本量。然而,还有重大的隐私和安全问题,除了概念和道德考虑。这些对于发展科学尤其重要,儿童参与者不能同意自己。随着我们进入数据开放的新时代,在设计数据共享工作时,我们必须充分代表利益相关者社区的观点。
■我们对195位父母对发展科学数据共享的看法进行了全面调查。调查主题包括父母愿意分享孩子的数据的程度,他们会与哪种类型的组织共享数据,以及他们愿意提供的同意类型。
■结果表明,父母普遍支持策展,但不开放,数据共享。除了个人隐私和安全问题,围绕研究目的的更多利他主义的考虑是重要的。父母压倒性地支持细微差别的同意模型,其中特定类型的数据共享的偏好可以随着时间的推移而改变。此模型与绝大多数发展科学研究中实施的模型不同,并且与许多资助者或出版商的要求背道而驰。
■该领域应着眼于创建共享存储库,以实现动态同意和策划共享机制等功能,从而考虑所解决的科学问题。需要更好的沟通和推广,以建立对数据共享的信任,和先进的分析方法将需要了解选择性共享对研究数据集的可重复性和代表性的影响。
UNASSIGNED: Data sharing in developmental science is increasingly encouraged, supported by funder and publisher mandates for open data access. Data sharing can accelerate discovery, link researchers with high quality analytic expertise to researchers with large datasets and democratise the research landscape to enable researchers with limited funding to access large sample sizes. However, there are also significant privacy and security concerns, in addition to conceptual and ethical considerations. These are particularly acute for developmental science, where child participants cannot
consent themselves. As we move forward into a new era of data openness, it is essential that we adequately represent the views of stakeholder communities in designing data sharing efforts.
UNASSIGNED: We conducted a comprehensive survey of the opinions of 195 parents on data sharing in developmental science. Survey themes included how widely parents are willing to share their child\'s data, which type of organisations they would share the data with and the type of
consent they would be comfortable providing.
UNASSIGNED: Results showed that parents were generally supportive of curated, but not open, data sharing. In addition to individual privacy and security concerns, more altruistic considerations around the purpose of research were important. Parents overwhelmingly supported nuanced consenting models in which preferences for particular types of data sharing could be changed over time. This model is different to that implemented in the vast majority of developmental science research and is contrary to many funder or publisher mandates.
UNASSIGNED: The field should look to create shared repositories that implement features such as dynamic
consent and mechanisms for curated sharing that allow consideration of the scientific questions addressed. Better communication and outreach are required to build trust in data sharing, and advanced analytic methods will be required to understand the impact of selective sharing on reproducibility and representativeness of research datasets.