Book Description

The Gene and the Genie looks at a genetic counseling program developed for a Bedouin community in Israel, where congenital hearing loss is passed through the generations at elevated rates. The program, modeled on an innovative and worldwide premarital counseling protocol developed by and for ultra-orthodox Ashkenazi Jews, takes into account arranged consanguineous marriages and Muslim opposition to abortion, weaving these community concerns into the genetic counseling. The situation is further complicated because hearing loss is not a life-threatening condition, which raises the question of which diseases should be screened for. The book describes these dilemmas and their consequences by following the implementation of the program's various stages. The book's empirical strength lies in its detailed analysis of genetic counseling across cultural and ethnic differences. This analysis involves a dynamic juxtaposition, through interviews and observations, of indigenous perspectives held by Bedouin men and women, as well as the professional views of Israeli and Bedouin counselors. The book's theoretical focus critiques the assumptions and limits of Western, individualistic bioethics as a framework for resolving dilemmas that may, in fact, have no resolution at the level of the individual because they are informed by kinship and communal norms. While the development of genetics exerts a tremendous impact on our society, health, and culture, we are still largely ignorant of its social, legal, and ethical implications. Genetic counseling is understood by many of its counselees to provide moral guidance and not merely information about test results. At a time when mapping the human genome is considered by many as the epitome of scientific progress, Raz's study moves toward the construction of a moral map of the debates in the genetic counseling and public health arenas. This book is part of the Ethnographic Studies in Medical Anthropology Series, edited by Pamela J. Stewart and Andrew Strathern, Department of Anthropology, University of Pittsburgh.