■自闭症自我倡导者关于自闭症基因测试的观点很重要,但是关于他们观点的关键问题出现了。
■我们采访了11位自闭症自我倡导者,通过自闭症自我宣传网站招募,每次1小时。
■受访者通过自己的个体感知挑战来看待基因检测及其潜在的利弊,需要和斗争,特别是关于污名和歧视,社会对自闭症缺乏适应和误解,他们对服务的特殊需求,被别人和自己指责为自闭症特征。他们对基因检测的看法往往不是二元的,而是取决于如何使用基因测试结果。受访者认为基因检测的优点在一般情况下和对他们自己(例如,通过提供自闭症的“科学证据”作为诊断,并可能增加服务的可用性)。但他们也意识到测试的缺点和局限性(例如,可能的优生应用)。参与者区分了他们认为对自己和整个自闭症社区最好的东西。当被问及他们是否会接受测试时,如果提供,受访者增加了几个考虑因素(例如,正在进行测试,因为它们总体上支持科学)。受访者对基因诊断是否会或应该减少自责进行了分歧,一些人对测试保持警惕,除非治疗,预防或社会态度发生了变化。权衡这些竞争的利弊可能很困难。
■这项研究,第一个使用深入的定性访谈来评估自闭症自我倡导者关于基因检测的观点,突出了关键的复杂性。受访者认为,这种测试本身并不完全是好的或坏的,而是可以接受的,取决于它是如何使用的,并且应该以有益的方式使用,不是有害的方式。这些发现对实践具有重要意义,多元利益相关者的教育,研究,和政策。
UNASSIGNED: Autism self-advocates\' views regarding genetic tests for autism are important, but critical questions about their perspectives arise.
UNASSIGNED: We interviewed 11 autism self-advocates, recruited through autism self-advocacy websites, for 1 h each.
UNASSIGNED: Interviewees viewed genetic testing and its potential pros and cons through the lens of their own indiviudal perceived challenges, needs and struggles, especially concerning stigma and discrimination, lack of accommodations and misunderstandings from society about autism, their particular needs for services, and being blamed by others and by themselves for autistic traits. Their views of genetic testing tended not to be binary, but rather depended on how the genetic test results would be used. Interviewees perceived pros of genetic testing both in general and with regard to themselves (e.g., by providing \"scientific proof\" of autism as a diagnosis and possibly increasing availability of services). But they also perceived disadvantages and limitations of testing (e.g., possible eugenic applications). Participants distinguished between what they felt would be best for themselves and for the autistic community as a whole. When asked if they would undergo testing for themselves, if offered, interviewees added several considerations (e.g., undergoing testing because they support science in general). Interviewees were divided whether a genetic diagnosis would or should reduce self-blame, and several were wary of testing unless treatment, prevention or societal attitudes changed. Weighing these competing pros and cons could be difficult.
UNASSIGNED: This
study, the first to use in-depth qualitative interviews to assess views of autism self-advocates regarding genetic testing, highlights key complexities. Respondents felt that such testing is neither wholly good or bad in itself, but rather may be acceptable depending on how it is used, and should be employed in beneficial, not harmful ways. These findings have important implications for practice, education of multiple stakeholders, research, and policy.