title: Genetics services in a social, ethical and policy context: a collaboration between consumers and providers.
abstract: We report a unique, collaborative effort by users and providers of genetic services to arrive at outlines for optimal ethics and clinical practice. Using focus groups of consumers (users) and providers (held separately), a provider-consumer project team developed 1) a consumer wish list, 2) an experientially based ethical overview of situations arising in practice, and 3) detailed suggestions for consumer-provider interactions in clinical settings. Consumers were primarily interested in accurate information, respect for persons, a smoothly functioning team, with the consumer as an equal member of the team, family integrity, and providers who knew the limits of their knowledge and were willing to refer. "Non-directive" counselling and privacy were not major issues in consumer focus groups; some thought providers should openly state their own opinions. Providers had a rather different list of priorities. Books and papers on clinical ethics usually originate from bioethicists and physicians. This pilot project is unique in including consumers and providers equally.
authors.affiliation: Eunice Kennedy Shriver Center for Mental Retardation, Inc., Waltham, Massachusetts, USA.
authors.forename: D C
authors.initials: DC
authors.lastname: Wertz
authors.forename: R
authors.initials: R
authors.lastname: Gregg
mesh_terms: D003256:Community Participation; D003299:Cooperative Behavior; D030881:Disclosure; D004992:Ethics, Medical; D005260:Female; D017144:Focus Groups; D005817:Genetic Counseling / Q000592:standards*; D033142:Genetic Services; D005820:Genetic Testing / Q000592:standards; D006282:Health Personnel; D006801:Humans; D009511:New England; D026684:Personal Autonomy; D017410:Practice Guidelines as Topic; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000592:standards; D017009:Professional Autonomy