title: 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.
authors: Department of Philosophy, University of Antwerp, Antwerpen, Belgium.
authors: Kristien
authors: K
authors: Hens
authors: Department of Human Genetics, KU Leuven, Leuven, Belgium.
authors: Hilde
authors: H
authors: Peeters
authors: Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium.
authors: Kris
authors: K
authors: Dierickx
mesh_terms: D001321:Autistic Disorder / Q000235:genetics*; D001675:Bioethics; D035843:Biomedical Research / Q000941:ethics; D005817:Genetic Counseling; D006801:Humans; D012098:Reproduction
keywords: autism; ethics; genetic counseling; reproduction; research ethics; review