Accounting for genetic testing: Familial and professional perspectives

Genetic testing is more than a laboratory procedure; it is a complex social activity involving clients, their families and genetic-counselling professionals. This complexity is occasioned by the fact that genetic testing is distinct from other kinds of medical testing because the hereditary nature of risk and disease accentuates issues of responsibility and blame. The rise of genetic counselling with its ethos of nondirectiveness seeks to help clients make difficult decisions in the face of risk/uncertainty and unintended consequences following the test results. Genetic counselling thus requires challenging and encouraging clients to engage in socio-moral reflection. The notion of ‘accounts’ is central to understanding how professionals and families routinely explain, defend and negotiate the consequences of genetic risk. A comprehensive review of the literature to date examines the extent to which decisions to (not) test and (not) disclose test results are experienced as tensions across autonomy, responsibility and blame.