Ethical dimensions of genetics in pediatric neurology: a look into the future.
Health care providers and families with children who participate in genetic research or who need specialized genetic services, including genetic testing, will encounter not only medical but difficult social, ethical, and legal questions surrounding pediatric genetic neurology. Children are often at the center of much of the genetic revolution and their unique needs raise special concerns about the risks and benefits associated with genetic research, particularly the issues of consent, the use of genetic databases, and gene therapy. Moreover, genetic research and testing raise important psychosocial risks. In this article we discuss some of the benefits and consequences of genetic technologies for children in relation to national and international guidelines. In particular, physicians, policy-makers, and families should be knowledgeable about the guidelines and have a good understanding of the psychosocial and ethical issues associated with genetics in pediatric neurology.
Avard
Denise M
DM
Centre de recherche en droit public, Université de Montréal, Quebec, Canada.
Knoppers
Bartha M
BM
D002170:Canada; D002648:Child; D030541:Databases, Genetic / Q000331:legislation & jurisprudence; D004992:Ethics, Medical; D015316:Genetic Therapy / Q000331:legislation & jurisprudence; D005823:Genetics / Q000331:legislation & jurisprudence*; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D009422:Nervous System Diseases / Q000235:genetics*; D014481:United States