Does benefit justify research with children?

Does benefit justify research with children?
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DOI:
10.1111/bioe.12385
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发表时间:
2018-01
期刊:
影响因子:
2.2
通讯作者:
Binik A
Binik A
中科院分区:
人文科学2区
文献类型:
--
作者:
Binik A

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将儿童纳入研究引起了一个棘手的伦理问题:当儿童不能提供知情同意时,他们参与研究和暴露于研究风险的理由是什么?这一问题的产生是因为一方面需要获得受试者对研究参与的知情同意,另一方面大多数儿童提供知情同意的能力有限,两者之间存在着紧张关系。大多数人都认为儿童参与临床研究是合理的。但在未经同意的情况下将儿童暴露在研究风险中的伦理理由仍然不清楚。一组流行的论点旨在通过呼吁利益的概念来证明儿童的风险暴露是合理的。我称之为“利益论证”。这一论点的突出版本捍卫了这样一种观点,即扩大我们对利益概念的理解,包括非医疗利益(如道德教育的利益)有助于证明儿童参与研究的合理性。我认为,现有的利益的论点是没有说服力的,并提出了问题的战略,呼吁更广泛的利益的概念,以证明儿童的研究风险。
The inclusion of children in research gives rise to a difficult ethical question: What justifies children's research participation and exposure to research risks when they cannot provide informed consent? This question arises out of the tension between the moral requirement to obtain a subject's informed consent for research participation, on the one hand, and the limited capacity of most children to provide informed consent, on the other. Most agree that children's participation in clinical research can be justified. But the ethical justification for exposing children to research risks in the absence of consent remains unclear. One prevalent group of arguments aims to justify children's risk exposure by appealing to the concept of benefit. I call these ‘benefit arguments’. Prominent versions of this argument defend the idea that broadening our understanding of the notion of benefit to include non‐medical benefits (such as the benefit of a moral education) helps to justify children's research participation. I argue that existing benefit arguments are not persuasive and raise problems with the strategy of appealing to broader notions of benefit to justify children's exposure to research risk.