The ethics of complexity. Genetics and autism, a literature review

Abstract

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.

Autism spectrum disorder and genetic testing: Parental perceptions and decision‐making

“…Ethical concerns related to the interpretation of variance of unknown significance, identification of incidental genomic findings, and potential discrimination or increased stigmatization based upon genetic diagnoses have all been raised (Driessnack et al, 2013;Miller, 2010). Currently, there is a lack of bioethical empirical studies on autism genetics querying the opinions of all parties, including persons with ASD themselves (Hens, Peeters, & Dierickx, 2016 (Baker & Jeste, 2015;Gurrieri, 2012;Pellicano & Stears, 2011).…”

Parents’ Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder—Data from a Norwegian Sample

“…These issues include respecting the patients’ autonomy and privacy and their need for protection from discriminations [12]. Good involvement of caregivers is needed to improve the accuracy of diagnosis, and to enable effective clinical management, tailored education [13,14], and genetic counseling, which involves complicated issues [15,16,17] that require a high degree of ethical reflection [15] informed by up-to-date knowledge about technological advancements [18,19] as well as of the views of those involved.…”

“…Clarifying the role of specific genetic factors may contribute to parents’ understanding of why their child has ASD [5]. Clinical relevance of genetic factors may include impact on the diagnostic process [15,21,22], on pharmacological and behavioral treatment [23], on adequate planning of actions [15] and on preparing parents for a life with an ASD child [22]. …”

No Association between Polymorphisms of Vitamin D and Oxytocin Receptor Genes and Autistic Spectrum Disorder in a Sample of Turkish Children

“…Supporting this view, the known genetic variations account for only 10.0% to 20.0% of patients with ASD. 6,12,13) Therefore, rather than a single causative factor, the combination and interplay of heritability and environmental risk factors may be important in etiology of ASD.…”