title: Lowering the burden of hereditary diseases in a traditional, inbred community: ethical aspects of genetic research and its application.
abstract: The remarkable progress in modern genetic technology enables the identification of genes causing devastating diseases and thereby the development of tools for prenatal diagnosis and carrier detection. To implement the results of genetic research in traditional societies, where genetic diseases are more prevalent due to inbreeding, necessitates a culturally appropriate approach that also promotes traditional and societal values important to the relevant community. This paper presents our experience with implementing the results of modern genetic research among the traditional community of the Negev Bedouin of Israel. Although the benefit of using those results for the prevention of genetic diseases seems obvious, successful implementation relies on a carefully designed educational program aimed at changing culturally related attitudes and perceptions. Such a program should attend to the needs of the community and be sensitive to its traditional values.
authors.forename: R
authors.initials: R
authors.lastname: Carmi
authors.forename: K
authors.initials: K
authors.lastname: Elbedour
authors.forename: D
authors.initials: D
authors.lastname: Wietzman
authors.forename: V
authors.initials: V
authors.lastname: Sheffield
authors.forename: I
authors.initials: I
authors.lastname: Shoham-Vardi
mesh_terms: D018912:Arabs / Q000235:genetics*; D003241:Consanguinity; D003469:Culture; D006580:Genetic Carrier Screening; D005817:Genetic Counseling; D030342:Genetic Diseases, Inborn / Q000208:ethnology* / Q000517:prevention & control*; D036281:Genetic Research / Q000941:ethics*; D005820:Genetic Testing; D006801:Humans; D007557:Israel