自我倡导者对自闭症遗传检测的看法:一种定性研究
Robert Klitzman1, Ekaterina Bezborodko2, Wendy K Chung3
1Department of Psychiatry, Columbia University, New York, NY, USA.
AJOB empirical bioethics
|April 21, 2024
概括
自我倡导自闭症的人认为,自闭症的基因检测并非本质上是好的或坏的. 它的可接受性取决于结果的使用方式,强调有益的应用而不是潜在的危害.
科学领域:
- 遗传学 遗传学 是一个
- 自闭症谱系障碍研究研究
- 生物伦理学生物伦理学
背景情况:
- 了解自闭症自我倡导者对遗传测试的看法至关重要.
- 关于他们对遗传诊断工具的看法,仍然存在关键问题.
研究的目的:
- 探索自闭症自我倡导者关于自闭症遗传检测的细微观点.
- 从自我倡导者的角度来看,理解被认为的优点,缺点和道德考虑.
主要方法:
- 对11名自闭症自我倡导者进行了深入的定性访谈.
- 参与者通过自闭症自我宣传网站招募.
主要成果:
- 自我倡导者认为基因测试是基于个人挑战,包括耻辱,歧视和社会误解.
- 对遗传测试的看法不是二元的,取决于结果的应用;确定了潜在的好处 (例如,诊断证据,服务访问) 和缺点 (例如,优生学).
- 参与者区分了个人和社区的好处,对接受测试的决定受到科学支持和减少自我责备的可能性等因素的影响.
结论:
- 对自闭症的基因测试被视为既不是完全积极的,也不是完全消极的,而是取决于其使用的上下文.
- 基因测试的伦理应用至关重要,需要以有益而不是有害的方式使用它.
- 这些发现对临床实践,利益相关者教育,研究和自闭症遗传学政策制定有重大影响.
相关概念视频
Autism Spectrum Disorder
88
Autism spectrum disorder (ASD) is a neurodevelopmental condition marked by persistent deficits in social communication and interaction alongside restrictive and repetitive behaviors or interests. ASD is sometimes accompanied by intellectual impairment.
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
88
Behavioral Genetics and Its Designs
363
Behavior genetics explores how genetic inheritance influences human behavior. It focuses on how genes, passed from parents to offspring, contribute to the development of behavioral traits and tendencies. This branch of genetics seeks to understand the complex interplay between inherited genetic factors and environmental influences in shaping our behaviors.
The primary methodologies used in behavior genetics include family studies, twin studies, and adoption studies, each providing unique...
The primary methodologies used in behavior genetics include family studies, twin studies, and adoption studies, each providing unique...
363
Genome-wide Association Studies-GWAS
13.4K
Genome-wide association studies or GWAS are used to identify whether common SNPs are associated with certain diseases. Suppose specific SNPs are more frequently observed in individuals with a particular disease than those without the disease. In that case, those SNPs are said to be associated with the disease. Chi-square analysis is performed to check the probability of the allele likely to be associated with the disease.
GWAS does not require the identification of the target gene involved in...
GWAS does not require the identification of the target gene involved in...
13.4K
Human Genetics
565
Human genetics provides a profound framework for understanding the interplay between genetic predispositions and human psychology. At the heart of this discipline lies the study of how genes influence physical traits, behaviors, and susceptibility to diseases. Each person carries a unique genetic code that subtly or significantly shapes their psychological and behavioral landscape.
The complex relationship between genetics and psychology is observable through common biological components such...
The complex relationship between genetics and psychology is observable through common biological components such...
565
Modeling in Therapy
72
Modeling, a key technique in therapy, uses observational learning to help clients acquire and practice new skills by watching therapists demonstrate desired behaviors. This approach, rooted in Albert Bandura's concept of vicarious learning, plays a significant role in therapeutic interventions for various psychological conditions, including social anxiety, ADHD, and depression.
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
72
Pedigree Analysis
84.2K
Overview
84.2K


