Hens Kristien, Peeters Hilde, Dierickx Kris
Department of Philosophy, University of Antwerp, Antwerpen, Belgium.
Department of Human Genetics, KU Leuven, Leuven, Belgium.
Am J Med Genet B Neuropsychiatr Genet. 2016 Apr;171B(3):305-16. doi: 10.1002/ajmg.b.32432. Epub 2016 Feb 12.
It is commonly believed that the etiology of autism is at least partly explained through genetics. Given the complexity of autism and the variability of the autistic phenotype, genetic research and counseling in this field are also complex and associated with specific ethical questions. Although the ethics of autism genetics, especially with regard to reproductive choices, has been widely discussed on the public fora, an in depth philosophical or bioethical reflection on all aspects of the theme seems to be missing. With this literature review we wanted to map the basic questions and answers that exist in the bioethical literature on autism genetics, research, counseling and reproduction, and provide suggestions as to how the discussion can proceed. We found 19 papers that fitted the description of "bioethics literature focusing on autism genetics," and analyzed their content to distill arguments and themes. We concluded that because of the complexity of autism, and the uncertainty with regard to its status, more ethical reflection is needed before definite conclusions and recommendations can be drawn. Moreover, there is a dearth of bioethical empirical studies querying the opinions of all parties, including people with autism themselves. Such empirical bioethical studies should be urgently done before bioethical conclusions regarding the aims and desirability of research into autism genes can be done. Also, fundamental philosophical reflection on concepts of disease should accompany research into the etiology of autism.
人们普遍认为,自闭症的病因至少部分可通过遗传学来解释。鉴于自闭症的复杂性以及自闭症表型的变异性,该领域的基因研究和咨询也很复杂,且涉及特定的伦理问题。尽管自闭症遗传学的伦理问题,尤其是与生殖选择相关的问题,已在公共论坛上广泛讨论,但似乎缺少对该主题所有方面的深入哲学或生物伦理反思。通过这篇文献综述,我们希望梳理出生物伦理文献中关于自闭症遗传学、研究、咨询和生殖方面存在的基本问题及答案,并就如何推进讨论提供建议。我们找到了19篇符合“聚焦自闭症遗传学的生物伦理文献”描述的论文,并分析其内容以提炼论点和主题。我们得出结论,由于自闭症的复杂性及其状况的不确定性,在得出明确结论和建议之前,需要更多的伦理反思。此外,缺乏询问包括自闭症患者本人在内的各方意见的生物伦理实证研究。在就自闭症基因研究的目标和可取性得出生物伦理结论之前,应尽快开展此类实证生物伦理研究。此外,在对自闭症病因进行研究的同时,应伴随对疾病概念的基本哲学思考。