The aim of the present chapter is to elucidate the paradoxical position of the individual legal subject in the context of human genetics. It first discusses the assumed individual “right to know” and “right not to know” about genetic susceptibilities, predispositions and risks when genetic tests exist, and assess the usual assumption according to which more information necessarily increases liberty and enhances autonomy. A second section is dedicated to the issues of confidentiality, intra-familial disclosure and familial management of genetic information. The idea is suggested that those issues challenge the fundamental liberal unit of the individual traditionally understood as a stable, unitary, embodied entity.
The “Right To Know” And The “Right Not To Know”
A usual argument favouring the “duty to know” over the “right not to know” is that genetic risk information positively reinforce the ‘genetically informed’ and ‘genetically empowered’ individual’s autonomy. The argument appears particularly compelling as a major ethical and legal imperative of neoliberal societies is the respect and, where necessary, enhancement of individual autonomy. Being aware of one’s genetic risks, it is assumed, allows individuals to better adapt their lifestyle and diet, adopting a preventative attitude in order to keep healthy.2 Yet, the relationship between genetic information and individual autonomy is much more complex than usually assumed.
Key Terms in this Chapter
Confidentiality: A duty held by professionals towards their clients and patients whereby they are committed to keep secret anything they learn in the course of the context of their professional relation with their client or patient.
Legal Subject: Classically, the legal subject as central unit of liberalism, is perceived as a unified, fix embodied entity. Post-modern and post-conventional scholars have challenged that unitary vision of the subject. The “genetic paradigm” further questions the adequacy of the liberal vision of the subject for the law.
Privacy: As fundamental human rights, encompasses both the right for the individual to control some aspects of his personality he projects on the world, and a right to freely develop his personality without excessive interference by the State or by others in matters that are of his exclusive concern.
Informational Capitalism: A contemporary political, economic and cultural tendency to perceive personal information as a basic resource (just as energy), an essential input to the management of public and private enterprises, as the most reliable element on which to build safety enhancement and efficiency strategies, and as a commodity, exchangeable on the “information market”.
Genetic Risk: Revealed and quantified by assessment of family history and/or by genetic testing, a genetic risk may, in exceptional cases, indicate with certainty that the individual will develop a specific disease but at unknown time, or, most of the time, merely indicate that the individual may be particularly predisposed or susceptible to develop a specific disease if exposed to specific chemicals, aliments, or lifestyle.
Right to Know: Used in the context of genetic testing, an individual’s right to know refers to the right an individual who has undergone a genetic test to know the full test results if he so wishes. The right to know does not necessarily implies the right for a person to benefit from genetic testing for free nor his right to learn about the result of a genetic test performed on a member of his family, be that person genetically related.
Right Not to Know: Used in the context of genetic testing, an individual’s right not to know refers to the right an individual who has undergone a genetic test to refuse information about the full or partial test results.