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...
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| Contributors: | |
| Format: | Electronic Article |
| Language: | English |
| Check availability: | HBZ Gateway |
| Journals Online & Print: | Drawer...
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| Interlibrary Loan: | Interlibrary Loan for the Fachinformationsdienste (Specialized Information Services in Germany) |
| Published: |
2000
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| In: |
Journal of medical ethics
Year: 2000, Volume: 26, Issue: 4, Pages: 261-265 |
| Online Access: |
Volltext (JSTOR) Volltext (kostenfrei) Volltext (kostenfrei) |
| Summary: | 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 |
| Contains: | Enthalten in: Journal of medical ethics
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| Persistent identifiers: | DOI: 10.1136/jme.26.4.261 |