The Amish: Perceptions of genetic disorders and services |
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Authors: | Jill D. Brensinger Renata Laxova |
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Affiliation: | (1) Genetics Counseling Program, University of Wisconsin, Madison, Wisconsin;(2) Clinical Genetics Center, University of Wisconsin, Madison, Wisconsin;(3) The Johns Hopkins Hospital, 550 N. Broadway, Suite 108, 21205 Baltimore, Maryland |
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Abstract: | Previous studies of the closed Amish population have proven to be valuable in the field of genetics, however they have not explored the Amish parents' opinions and attitudes concerning genetic conditions and services. This exploration is necessary in order to provide culturally sensitive health care to a population at an increased risk for certain genetic conditions. The purpose of the present study was to examine the Amish population's general knowledge of genetic disorders, services, and the terminology used in describing inherited conditions, as well as their attitudes toward medical care and ethical and reproductive issues. Information was obtained from 17 Amish families, 12 who had an incidence of a genetic condition and five who had one or more children with other special health care needs, during personal interviews conducted in their homes in Lancaster, Pennsylvania. Results of the interviews showed that the birth of an affected child did not deter subsequent reproduction, that the majority of the parents were never offered genetic counseling or prenatal testing, and that the parents are interested in understanding the cause of their children's problems and recurrence risks. |
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Keywords: | Amish inbreeding cross-cultural genetic counseling |
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