ABSTRACT
This chapter focuses on an Arab-Bedouin programme in Israel, representing an ethnic-religious (traditional Muslim) project which in one of its earlier stages involved carrier screening for a relatively mild disease (congenital deafness) using a spouse-selection scheme that originally failed to engage the community. However, when genetic testing for severe diseases was added, this programme gained momentum. The carrier screening programme I am about to describe has unfolded along various stages which need to be differentiated. In addition, there are at least two major critical foci guiding the discussion of this programme: first, screening for a relatively mild condition such as congenital hearing loss, in contrast to screening for other genetic diseases which are also prevalent among the Bedouin; and second, how the social reality of cousin marriage influences the screening programme. These two issues carry different sets of problems that need to be differentiated. Interviews with health professionals and community members show that while health professionals designed the programme to fit local norms such as consanguinity, matchmaking and the Muslim ban on abortion, for the Bedouin it also meant the medicalisation of marriage arrangements and family planning. The ethnography focuses on the negotiated order that was developed around carrier testing, placing the voices of community members in the context of personal agendas, gender roles and broader social and political processes, and exploring the implications for induced cultural change in community-based health interventions, scientific boundary-work, and the ethnography of bioethics.
