Reckless or pioneering? public health genetics services in Israel

This chapter looks at public health genetics services in Israel as a network of people, resources, and institutions whose cooperative activity produces current genetic knowledge and practice. This chapter will situate the production of genetics services within relevant political, cultural, and professional contexts, looking at the social factors that make them possible, indeed desirable, and the dynamics that shape their design and prioritizing. Public health genetics services carry special significance from a sociological and bioethical perspective. When states offer (and sometimes mandate) population-based genetic screening for public health and reproductive purposes, they risk “backdoor eugenics” and the potential compromising of individual autonomy. When ethnicity and religiosity are used as categories in genetic databases and screening programs, this may entail the racial marking of genetic risks or biomarkers, with possible stigmatizing effects on minority communities. When genetic screening becomes part of public health, it usually follows the logic of control and prevention of genetic diseases; this is a top-down “population” approach that is not necessarily attentive to individual needs and preferences (Khoury et al. 2000; Stewart et al. 2007). Leo ten Kate described the problem with a public health approach to genetics services in the following manner: Clinical genetics is concerned with individual persons or couples or families who have or fear a health problem. These individuals, couples or families are seen one by one. Public health, on the other hand, is not primarily interested in persons or families who are already aware of a problem, but it focuses on people who may not yet be aware but are at risk of developing a health problem. (2005: 7) Screening for Down’s syndrome provides a striking example. Down’s syndrome has been viewed for most of its history as a public health problem, with public (often mandated) prenatal screening aimed at reducing its incidence (Raffle 2001). As Bryant and colleagues (2008) show, only relatively recently have there been efforts to promote reproductive choice rather than test uptake as the preferred measure of public health screening success. While the public health goal is reducing the prevalence of disease, genetic counseling to the parents of a Down’s syndrome fetus should ideally be nondirective and conducted in a manner that respects the parents’ norms and values. In certain religious communities, this means that selective abortion would not be the preferred option (Raz 2009).