Reproductive genetics, risk, and context

This chapter uses the example of consanguineous marriages to illustrate how risk for offspring with genetic disease has become a focal concern in the governance of the health of populations, and to explore some local responses to the scientific discourse of genetic risk in cousin marriages. It first outlines the principles of Mendelian genetics that underpin clinical assessments of risk for single gene conditions as backdrop for the analysis of divergences between scientific and local understandings of genetic risk. It considers similarities and differences between public and policy discourses about the health risks of consanguineous marriage in Europe, where such marriages are rare, and in the Middle East, where such marriages are more common. In Europe, the issue is bound into discourses concerning the non-integration of immigrant-origin minorities; across the Gulf States, consanguineous marriage seems to have become a proxy for genetic risk, its identification and management associated with modernity. It then explores some consistent disconnects between scientific understandings of causality and risk for recessive disease across these contexts. It notes, locally, the common invocation of environmental and spiritual factors and the equation of genes with blood, the influence of patrilineal kinship, and the ambiguities of the concept of being a ‘carrier’ and of probabilistic risk assessments. The chapter shows how scientific and local ideas about risk perception and management evolve alongside and relation to one other, sometimes with clinically significant consequences for families and for health services.