The Amish: Perceptions of genetic disorders and services

Jill D. Brensinger, Renata Laxova

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)27-47
Number of pages21
JournalJournal of Genetic Counseling
Volume4
Issue number1
DOIs
StatePublished - Mar 1 1995
Externally publishedYes

Keywords

  • Amish
  • cross-cultural genetic counseling
  • inbreeding

ASJC Scopus subject areas

  • Genetics(clinical)

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