Autonomy and the right not to know incidental findings arising during treatment response monitoring

Abstract

The moral right not to know (RNTK) is predominantly grounded in autonomy. This means that the scope, strength and nature of the moral RNTK is determined in light of the ethical principle of respect for autonomy. In this paper, I will further explore the relationship between patient autonomy and the scope of the RNTK in the context of treatment response monitoring. I focus on treatment response monitoring because novel challenges can be formulated against grounding the RNTK in autonomy in this context. I will consider three accounts of patient autonomy: Beauchamp and Childress' account of patient autonomy, Weimer's evidence-responsiveness condition for patient autonomy and Pugh's account of rational autonomy. Throughout the paper, I will illustrate the implications of these accounts of patient autonomy for the scope of the RNTK by asking which incidental findings (IFs) that arise during treatment response monitoring can be autonomously refused by metastatic breast cancer patients. I will conclude that although it becomes more difficult to autonomously refuse particular IFs on Weimer and Pugh's more demanding accounts of patient autonomy in the context of treatment response monitoring, they do not make it radically impossible to autonomously refuse any IF. Given the strength of the RNTK, this provides us with a strong reason to obtain, contrary to current clinical practice, patients' consent regarding the disclosure of IFs in the context of treatment response monitoring.