Accounting for Genetic Testing: Familial and Professional Perspectives

Abstract

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.

Key Concepts:

  • Genetic testing is an inherently complex socio‐moral activity in which clients, families and professionals navigate dilemmas that often centre on themes of autonomy, responsibility and blame.

  • Genetic counselling maintains an ethos of nondirectiveness to promote an ethic of self‐governance and client‐centred practice.

  • In contemporary liberal society, the high premium placed on rational autonomy shifts the burden of responsibility and blame to the bearer of choices and to their ability to make decisions wisely.

  • Genetic counselling often requires eliciting ‘accounts’ to challenge or encourage clients to engage in socio‐moral reflection.

  • Accounts are linguistic/rhetorical devices that involve subtle negotiation of individual actions vis‐à‐vis cultural values, moral norms and social expectations.

Keywords: genetic testing; genetic risk; decision‐making; accounts; autonomy; responsibility; blame

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Further Reading

Harper PS and Clarke A (eds) (1997) Genetics, Society and Clinical Practice. Oxford: Bios Scientific Publishers.

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Arribas‐Ayllon, Michael, Sarangi, Srikant, and Clarke, Angus(Dec 2012) Accounting for Genetic Testing: Familial and Professional Perspectives. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0024171]