Cancer genetics and its ‘different faces of autonomy’

Abstract

In this article we discuss the development of a practice of screening, preventive treatment, and presymptomatic testing for individuals at risk of Familial Adenomatous Polyposis (FAP), a specific hereditary predisposition for colon cancer. We describe this development as a process of co-evolution, showing how this practice has been gradually taking shape in a new network of actors, routines, rules, institutions and technologies. We further argue that, looking at the emergence and transformation of this practice, we can distinguish two different regimes: a regime of prevention and a regime of self-determination. In each of these regimes the autonomy of patients and individuals at risk is shaped in a different way, that is, through a different complex of ideals, procedures, institutions, technologies, and routines. In our view, the interference between these two regimes is an important characteristic of the emergent new genetics and is reflected in the growing debate about non-directivity in genetic counselling. However, as our argument implies, when facing the challenges of the new genetics we should not restrict the debate to the quality and ethics of counselling, but extend our view to the whole complex of elements and activities which shapes individual autonomy in the context of different regimes.

Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists

“…It seems that clinical geneticists implicitly transmit considerations relating to the right not to know in cases of untreatable diseases to breast and colorectal cancer, which they themselves classify as ‘treatable diseases’ vi. However, in the context of ‘new genetics’,22 in which individuals are informed about future health risks and about options for disease prevention, there is a growing debate in ELSA literature about the merits and limitations of a non-directive approach 23 24. Previously discussed studies suggest that clinical practices abroad are experimenting with more active approaches by geneticists 9 11–14.…”

Reproductive technologies and the quality of offspring in Asia: reproductive pioneering and moral pragmatism?

“…However, aside from the difficulties of fulfilling the ethical standards of non-directive counselling in practice, the notion of 'non-directive genetic counselling' ignores the fact that the need for choice is itself socially constructed (Latimer 2007). Concepts such as 'non-directive counselling' and 'autonomous decision-making' are similarly relational (Latimer 2007;Stemerding and Nelis 2006) and should be seen in the light of what constitutes autonomous choice.…”

From lab to lifestyle: translating genomics into healthcare practices

“…The role of the genetics specialist has evolved alongside the new technologies to include working to support individuals in disease prevention activities, such as having regular mammograms or colonoscopies to detect early signs of breast or bowel cancer. As such, the founding principle of genetic counseling, non-directiveness, is now being joined by the principle of prevention (Koch andSvendsen 2005, Stemerding andNelis 2006). The reconstitution of professional communities of practice around the development of new technologies does not necessarily take the form of a turf war between existing disciplines over who should control the technology.…”