The Gene and the Genie: Tradition, Medicalization and Genetic Counseling in a Bedouin Community in Israel

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.