Genetics services in a social, ethical and policy context: a collaboration between consumers and providers
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 exper...
| Autores principales: | ; |
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| Tipo de documento: | Electrónico Artículo |
| Lenguaje: | Inglés |
| Verificar disponibilidad: | HBZ Gateway |
| Journals Online & Print: | Gargar...
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Publicado: |
BMJ Publ.
2000
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| En: |
Journal of medical ethics
Año: 2000, Volumen: 26, Número: 4, Páginas: 261-265 |
| Acceso en línea: |
Volltext (JSTOR) Volltext (kostenfrei) Volltext (kostenfrei) |
| Sumario: | 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. |
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| ISSN: | 1473-4257 |
| Obras secundarias: | Enthalten in: Journal of medical ethics
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| Persistent identifiers: | DOI: 10.1136/jme.26.4.261 |