Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium.
BMC Med Ethics. 2021 May 17;22(1):61. doi: 10.1186/s12910-021-00627-1.
Research with cerebral organoids is beginning to make significant progress in understanding the etiology of autism spectrum disorder (ASD). Brain organoid models can be grown from the cells of donors with ASD. Researchers can explore the genetic, developmental, and other factors that may give rise to the varieties of autism. Researchers could study all of these factors together with brain organoids grown from cells originating from ASD individuals. This makes brain organoids unique from other forms of ASD research. They are like a multi-tool, one with significant versatility for the scope of ASD research and clinical applications. There is hope that brain organoids could one day be used for precision medicine, like developing tailored ASD drug treatments.
Brain organoid researchers often incorporate the medical model of disability when researching the origins of ASD, especially when the research has the specific aim of potentially finding tailored clinical treatments for ASD individuals. The neurodiversity movement-a developmental disability movement and paradigm that understands autism as a form of natural human diversity-will potentially disagree with approaches or aims of cerebral organoid research on ASD. Neurodiversity advocates incorporate a social model of disability into their movement, which focuses more on the social, attitudinal, and environmental barriers rather than biophysical or psychological deficits. Therefore, a potential conflict may arise between these perspectives on how to proceed with cerebral organoid research regarding neurodevelopmental conditions, especially ASD.
Here, we present these perspectives and give at least three initial recommendations to achieve a more holistic and inclusive approach to cerebral organoid research on ASD. These three initial starting points can build bridges between researchers and the neurodiversity movement. First, neurodiverse individuals should be included as co-creators in both the scientific process and research communication. Second, clinicians and neurodiverse communities should have open and respectful communication. Finally, we suggest a continual reconceptualization of illness, impairment, disability, behavior, and person.
利用大脑类器官研究自闭症谱系障碍 (ASD) 的病因学正取得重大进展。大脑类器官模型可以由 ASD 供体的细胞生长而来。研究人员可以探索可能导致自闭症的各种遗传、发育和其他因素。研究人员可以用源自 ASD 个体的细胞培养的大脑类器官一起研究所有这些因素。这使大脑类器官与其他形式的 ASD 研究不同。它们就像一个多用途工具，对于 ASD 研究和临床应用的范围具有显著的多功能性。人们希望大脑类器官有朝一日能用于精准医学，例如开发针对 ASD 的定制药物治疗。
大脑类器官研究人员在研究 ASD 的起源时，通常会采用残疾的医学模式，尤其是当研究的目的是为 ASD 个体寻找潜在的定制临床治疗方法时。神经多样性运动——一种将自闭症理解为自然人类多样性的一种形式的发育障碍运动和范例——可能会不同意大脑类器官对 ASD 的研究方法或目标。神经多样性倡导者将残疾的社会模式纳入其运动中，该模式更关注社会、态度和环境障碍，而不是生物物理或心理缺陷。因此，在如何进行与神经发育障碍相关的大脑类器官研究方面，这些观点之间可能会出现潜在冲突，尤其是在 ASD 方面。
在这里，我们介绍了这些观点，并提出了至少三个初步建议，以实现更全面和包容的 ASD 大脑类器官研究方法。这三个初步起点可以在研究人员和神经多样性运动之间架起桥梁。首先，应让神经多样性个体作为共同创造者参与科学过程和研究交流。其次，临床医生和神经多样性社区应该进行开放和尊重的沟通。最后，我们建议不断重新概念化疾病、损伤、残疾、行为和个体。
