Call for moral recognition as part of paediatric assent.
Call for moral recognition as part of paediatric assent.
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DOI：
10.1136/jme-2023-109013
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发表时间：
2023-07
影响因子：
4.1
通讯作者：
Blumenthal-Barby, Jennifer
中科院分区：
文献类型：
--
作者：
Smith, Jared;Blumenthal-Barby, Jennifer
在“涉及那些缺乏能力的人的研究的具体化和同意”中，Smajdor认为，授予知情同意权（AWIC）的能力受损的成年人通常被排除在生物医学研究之外，因为他们不能提供知情同意，导致AWIC从此类研究中受益的机会减少。Smajdor使用Honneth的物化概念提出，在涉及AWIC的案件中获得同意（而不是同意）为患者提供了与其能力无关的道德认可。同意通过将病人纳入一个共同的道德领域来提供这种承认，突出她的能动性和价值，而不是将她贬低为无能或需要管理的东西。同意也避免了接地，或依赖，未来的发展自主权（pp。第5-6段）。1我们最近对潜在儿科脑深部电刺激（pDBS）治疗难治性强迫症（OCD）和肌张力障碍的患者和护理人员的研究表明，儿科神经外科患者希望获得Smajdor与同意相关的那种认可，他们的护理人员基本上同意。2 3由于（通常）美国的儿科患者无法给予知情同意，他们的护理人员必须提供。这就提出了如何将儿科患者正确纳入DBS决策过程的问题。沿着明显的一个方面是，许多患者表示，如果他们正在考虑pDBS，他们希望参与决策过程，即使这些患者承认他们的护理人员有最终发言权。参与决策的愿望本身就是一种自我约束的要求，即没有我的参与，任何事情都不能对我做。当被问到他们希望如何参与时，一位病人说：“我不希望我的父母根据......为我做决定......因为我是一个必须忍受它的人。所以我想，只是参与医生所说的话，并接受它将要做什么的教育。”我想知道关于它的一切，如果它会在我的大脑中，“（PT 15）。
In ‘Reification and Assent in Research Involving Those Who Lack Capacity’, Smajdor argues that adults with impaired capacity to grant informed consent (AWIC) are often excluded from participating in biomedical research because they cannot provide informed consent, leading to decreased chances AWIC will benefit from such research. Smajdor uses Honneth’s concept of reification to propose that securing assent (rather than consent) in cases involving AWIC offers patients moral recognition that is not tied to their capacities. Assent provides this recognition by including the patient in a shared moral sphere, highlighting her agency and worth without reducing her to her incapacity or a thing-to-bemanaged. Assent also avoids grounding in, or a reliance on, the future development of autonomy (pp. 5–6). 1 Our recent research on patient and caregiver perspectives of potential paediatric deep brain stimulation(pDBS) for refractory obsessive–compulsive disorder (OCD) and dystonia demonstrates that paediatric neurosurgery patients desire the kind of recognition Smajdor associates with assent, and their caregivers largely agree. 2 3 Since (generally) paediatric patients in the USA are unable to grant informed consent, their caregivers must provide it instead. This raises the question of how to properly integrate paediatric patients into the DBS decision-making process. One dimension along which this is evident is that many patients expressed that they would want to be involved in the decision-making process if they were considering pDBS, even when these patients acknowledge that their caregivers had the final say. The desire to participate in the decision-making itself is a demand for recognition—that nothing be done to me without my input. When asked how they would want to be involved, one patient remarked:‘I wouldn’t want my parents to make decisions for me based on… because I’m the one who is going to have to live with it. So I guess, just being present in what the doctor has to say and being educated on what it’s going to do. I would want to know everything about it if it’s going to be in my brain,’(PT15).
影响因子：
4.1
作者：
Smajdor, Anna
通讯作者：
Smajdor, Anna
影响因子：
7.7
作者：
Muñoz KA;Kostick K;Torgerson L;Zuk P;Kalwani L;Sanchez C;Blumenthal-Barby J;Storch EA;Lázaro-Muñoz G
通讯作者：
Lázaro-Muñoz G
影响因子：
1.8
作者：
Munoz, Katrina A.;Blumenthal-Barby, Jennifer;Storch, Eric A.;Torgerson, Laura;Lazaro-Munoz, Gabriel
通讯作者：
Lazaro-Munoz, Gabriel