A response to commentators on "Should children decide whether they are enrolled in nonbeneficial research?".

A response to commentators on "Should children decide whether they are enrolled in nonbeneficial research?".
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对评论者“孩子们应该决定是否参加无益研究吗?”的回应。

DOI:
10.1162/152651603322614805
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发表时间:
2003
期刊:
The American journal of bioethics : AJOB
影响因子:
--
通讯作者:
Shah,Seema
Shah,Seema
中科院分区:
--
文献类型:
--
作者:
Wendler,David;Shah,Seema

文献摘要

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Similarly, the principle of respect for persons only tells us to treat children as they ought to be treated. Whether asking children to make research decisions is integral to respecting them is a further question. Should investigators solicit children’s assent at the point they can nod their heads, when they can understand at least one aspect of research participation, when they can understand several aspects (and which ones?), when they can understand all the elements of informed consent, or only when they become emancipated from their parents? The principle of respect for persons, while obviously relevant and important, does not answer this question. Some objected that a specific age cutoff, like the one we recommend, ignores the fact that children’s ability to make decisions develops at very different rates. Yet, we often base public policy on somewhat arbitrary cutoffs. We don’t mandate that teenagers can obtain a driver’s license at a particular age because we think all children suddenly develop the ability to drive at that age. Instead, we recognize variation, but make compromises given the costs of more nuanced approaches. We speculated that assessing the assent capacity of each child individually would be difficult, and not worth the cost, assuming investigators inform children of the proposed research, and respect their dissent. But, as several commentators pointed out, this is just speculation, and a more nuanced approach may work. It is hard to be sure since, as far as we know, no one has developed an assent assessment tool, or even described what such a tool would assess. Here too, final conclusions must await further research. To consider one final argument, several commentators claimed that children’s role in research decision making should be patterned on how families involve their children in decision making in other areas of life. This argument deserves future consideration. Presumably, families involve their children in decision making to different degrees, and the extent to which they do so varies by the decision in question and diverse cultural and social norms. Hence, without further argument, this view seems to imply that no substantive regulatory stance should be adopted. Instead, the regulations should state simply that the research should be presented to the family, and the family allowed to make a decision as they prefer. To privilege a particular approach, to say that children’s assent is or is not required, suggests that this approach is preferable. To endorse this view, then, we need reasons independent of the way that families actually make decisions.