The Gene and the Genie

The subject of this book is a genetic counseling program developed for a Bedouin community in Israel, where congenital hearing loss and thalassemia are passed through the generations at elevated rates. The program, modeled on an innovative and now worldwide premarital counseling protocol developed by and for ultra-orthodox Ashkenazi Jews, takes into account arranged consanguineous marriages and Muslim opposition to abortion, building these community concerns into the production and implementation of genetic counseling. The case is further complicated because hearing loss is not a life-threatening condition, and therefore raises the question of which diseases are worth screening for. The book describes these dilemmas and their consequences by following the implementation of the program's various stages, including community involvement, educational instruction, DNA testing, and genetic counseling. This process generated a new social reality whose public and private facets did not always match.The book's empirical strength lies in a detailed analysis of genetic counseling across cultural and ethnic differences. This involves a dynamic juxtaposition, through interviews and observations, of indigenous perspective held by Bedouin men and women and the professional views of Israeli and Bedouin counselors. The book's theoretical focus provides a critique of the assumptions and limits of Western, individualistic bioethics as a framework for resolving dilemmas which 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 is exerting a tremendous impact on our society, health, and culture, we are still largely ignorant of its social, legal, and ethical implications. Genetic counseling is interpreted by many of its couselees as providing moral guidance and not merely information about test results. Genetic counseling can also have eugenic and coercive aspects, especially when targeting at-risk, non-western populations. At a time when mapping the human genome is considered by many as an epitome of scientific progress, this study fills an important gap towards constructing a moral map of the debates in the domain of genetic counseling and public health.

Aviad E. Raz is a senior lecturer at the Department of Behavioral Sciences, Ben-Gurion University of the Negev, Be'er-Sheva, Israel.