Genetics Services in a Social, Ethical and Policy Context: A Collaboration Between Consumers and Providers
Wertz, Dorothy C.
Journal of Medical Ethics. 2000 Aug; 26(4): 261-265.
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.
Attitudes; Autonomy; Clinical Ethics; Comparative Studies; Counseling; Consultation; Diagnosis; Directive Counseling; Disclosure; Ethics; Focus Groups; Genetic Counseling; Genetic Services; Genetics; Genetic Screening; Health; Health Personnel; Knowledge; Patient Care; Patient Care Team; Physicians; Prenatal Diagnosis; Privacy; Professional Ethics; Public Participation; Referral and Consultation;
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