Towards a broader understanding of agency in biomedical ethics

Rodrigo López B. :

Manuel Trachsel:

Nikola Biller-Andorno:

Abstract With advances in medical science, the concept of agency has received increasing attention in biomedical ethics. However, most of the ethical discussion around definitions of agency has focused either on patients suffering from mental disorders or on patients receiving cutting-edge medical treatments in developed countries…


With advances in medical science, the concept of agency has received increasing attention in biomedical ethics. New medical technology and treatments are challenging previously established ethical concepts. For example, the introduction of assisted reproductive technologies (ART) has challenged traditional concepts of autonomy, informed consent, and reproductive rights (Kalbian 2005). A similar phenomenon has occurred with the development of deep brain stimulation (DBS) (Mathews 2011; Lipsman and Glannon 2012) and psycho-pharmaceutical products (Levy 2011; Singh 2013), as well as with the advances in knowledge on mental disorders (Szasz 2001; Pearce and Pickard 2010). Concepts such as liability, responsibility, motivation and free will are currently in the focus of analysis and debate. The concept of agency is frequently used to address these issues (Szasz 2001; Pearce and Pickard 2010; Edwards et al. 2011; Levy 2011; Mathews 2011; Blacksher and Lovasi 2012; Lipsman and Glannon 2012; Singh 2013). However, these discussions frequently focus on patients undergoing newly developed medical treatments, an option generally available only to a minority of people. An example is the case of HIV/AIDS, which was an appealing topic for the mainstream bioethics community when it was an epidemiologically relevant issue for the developed world. The topic became less popular when the epidemic was controlled in the developed world, despite still being a major burden in the developing countries (Rennie and Mupenda 2008). Similarly, there is little focus on the agency of people from poorer countries or of patients around the world suffering from common conditions, such as diabetes or hypertension. The aim of the present article is to argue in favor of a broader understanding of the concept of agency in bioethical debates, in order to make room for common diseases and for cases with patients from developing countries. First, several bioethical meanings of agency are described. Then, the shortcomings of these definitions are illustrated by means of examples. A definition of agency used in development studies is compared with other definitions currently used in bioethics. Finally, the paper argues that the definition originated in development studies helps to overcome the shortcoming of the definitions currently used in bioethics.