Health Research Authority, London, UK.
Department of Paediatric Oncology, Leeds Children's Hospital, Leeds, UK.
Arch Dis Child. 2019 Apr;104(4):385-388. doi: 10.1136/archdischild-2018-315117.
There is evidence abroad of a cautious if not protective approach to research involving children and young people (CYP). We are sensitive to these views but believe they are based on a misconception that we must address together. In this introductory article we look at the complexities and risks of this research, how we must involving CYP and their families in the all aspects of research, how to seek valid consent and assent and how research findings should be reported. Considering how we should conduct this ongoing debate, we outline seven principles that we believe should underpin the necessary dialogue between all with legitimate interest. Our debate should be: (1) evidence informed: arguments should be supported by appropriate and reasonably accurate factual claims; (2) transparent about the grounds for decisions; (3) balanced: arguments should be met by contrary arguments; (4) conscientious: we must be willing to talk and listen, with civility and respect; (5) substantive: arguments should be considered sincerely on their merits, not on how they are made or by who is making them; (6) comprehensive: all points of view held by significant portions of the population should receive attention; and (7) with procedures for revising decisions in light of challenges, and it should be our responsibility to ensure we have met all of these.
国外有证据表明,人们对涉及儿童和青少年(CYP)的研究采取了谨慎的态度,如果不是保护的态度。我们对这些观点很敏感,但我们认为这些观点基于一个误解,我们必须共同解决这个误解。在这篇介绍性文章中,我们探讨了这项研究的复杂性和风险,我们如何必须让 CYP 和他们的家人参与研究的各个方面,如何寻求有效的同意和同意,以及如何报告研究结果。考虑到我们应该如何进行这场持续的辩论,我们概述了我们认为应该为所有有合法利益的人之间的必要对话奠定基础的七个原则。我们的辩论应该是:(1)证据为基础:论点应该以适当和合理准确的事实主张为依据;(2)对决策依据透明;(3)平衡:论点应该与相反的论点相对应;(4)认真:我们必须愿意以礼貌和尊重的态度进行交谈和倾听;(5)实质性:论点应该根据其优点进行认真考虑,而不是根据其提出的方式或提出者是谁;(6)全面:应该关注人口中重要部分持有的所有观点;(7)有程序根据挑战修改决定,我们有责任确保我们已经满足了所有这些要求。