Bioethical Issues in Neuropsychiatric Genetic Disorders

Neurogenetic disorders share many characteristics with other rare disorders and raise complex bioethical issues for clinical practice and research. Because patients frequently present with cognitive or communicative impairments, special measures to guarantee consent and assent are required. Many neurogenetic disorders present with autistic behavior or borderline sociocommunicative aspects. The likelihood that early educational intervention benefits the adaptive skills of these persons leads to screening programs that pose bioethical challenges. The biggest conflicts come from the lack of research in clinical care and the limited application of biomedical ethics in the personal support services arena. Alternatives include the development of personal services portfolios, establishing and supporting bioethical committees, reviewing and improving ethical aspects in research initiatives in this population, and empowering clients (and their legally authorized representatives) for participation and representation.