| The New Genetics: From Research Into Health Care: Social and Ethical Implications for Users and Providers 1999 Edition Contributor(s): Nippert, Irmgard (Editor), Neitzel, Heidemarie (Editor), Wolff, Gerhard (Editor) |
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ISBN: 354065920X ISBN-13: 9783540659204 Publisher: Springer OUR PRICE: $161.49 Product Type: Paperback Published: July 1999 Annotation: The ultimate goals of human genome research are the treatment, cure and eventual prevention of genetic disorders but treatment and cure lag behind the ability to detect disease or increased suceptibility to disease. Most genetic services today deliver diagnosis and counseling, effective treatment is rare. As more genes are identified there is growing pressure to implement new testing programs or broaden existing programs and otherwise increase both the number of available genetic tests and the amount of genetic information. The main issues concerned among others are: voluntariness of services, freedom of choices, patient autonomy, informed consent, confidentiality of genetic information, privacy, testing of minors, social discrimination and stigmatization. |
| Additional Information |
| BISAC Categories: - Medical | Ethics - Medical | Genetics - Science | Life Sciences - Biology |
| Dewey: 174.25 |
| LCCN: 99-31137 |
| Physical Information: 0.38" H x 6.14" W x 9.21" (0.57 lbs) 169 pages |
| Descriptions, Reviews, Etc. |
| Publisher Description: ciples and recommendations on genetic service provision in a multidisciplinary way. At the workshop the main issues and principles that are presently emerging as integral parts of national and international recommendations on genetic service provision such as: - voluntary provision of services - protection of choices - patient autonomy - informed consent - nondirective counseling - confidentiality were discussed and the participants tried to assess how these principles are known, met or violated in practice according to the newest up-to-date research findings and to identify existing gaps in data provision, research and policy analy- sis. The workshop brought together an international multidisciplinary group of well known experts including health professionals, molecular biologists, social scientists and ethicists as well as representatives of patient organizations and pol- icy makers who presented and discussed the newest data and survey findings on selected ethical and social issues in the provision of new genetic tests. The main scientific contributors to this meeting have been awarded grants from ELSI, ESLA, BIOMED 1 and BIOMED 2 programs as well as national grants. |
