Lowering the burden of hereditary diseases in a traditional, inbred community: Ethical aspects of genetic research and its application

The remarkable progress in modern genetic technology enables the identifica tion of genes causing devastating diseases and thereby the development of t ools for prenatal diagnosis and carrier detection. To implement the results of genetic research in traditional societies, where genetic diseases are m ore prevalent due to inbreeding, necessitates a culturally appropriate appr oach that also promotes traditional and societal values important to the re levant community. This paper presents our experience with implementing the results of modern genetic research among the traditional community of the N egev Bedouin of Israel. Although the benefit of using those results for the prevention of genetic diseases seems obvious, successful implementation re lies on a carefully designed educational program aimed at changing cultural ly related attitudes and perceptions. Such a program should attend to the n eeds of the community and be sensitive to its traditional values.