Contesting the right not to know

Dr Lisa Dive1

1University Of Sydney, University Of Sydney, Australia

The right not to know one’s genetic or genomic information is accepted by many as an absolute right, despite the debate that has occurred in recent decades. I will argue that this debate has been characterised by conceptual inconsistency, leading to confusion. I will focus on two key features of arguments about this purported right: firstly, how the right not to know depends on the concept of autonomy; secondly, I will address the conflation of the right to information with the right to refuse information.

Many arguments – both for and against the right not to know – draw on conceptions of autonomy. I will outline some of the different understandings of, and arguments about, this purported right, and will show that different concepts of autonomy can lead to different conclusions about how we ought to respond to requests to remain in ignorance of one’s genetic or genomic information. My argument is that a broader conception of autonomy as self-determination leads to a requirement to balance various moral considerations, and refutes the notion that the right not to know should always override all other moral concerns.

Following a brief overview of different ways the right not to know genetic or genomic information has been characterised in the literature, I will clarify how this purported right is best understood. In particular, I will distinguish it from the right to know one’s genomic information. I will show how clarity about the concepts and theoretical framing of an issue is important for how we consider practical scenarios where these rights might apply. Based on this analysis, I will argue that the right not to know cannot be accepted as absolute right, and should be treated as a preference to be considered among various relevant moral factors in any clinical decision-making situation.\


Biography:

With a background in analytic philosophy and professional experience in health policy, Lisa has a strong interest in applied ethics in the healthcare context. Her research explores the challenges that emerging medical technologies – such as genomics – pose for fundamental concepts in medical ethics. She currently has a particular focus on patient autonomy, examining how it comes under pressure in information-intensive areas of medicine, and the epistemic challenges that arise with increasing complexity of medical knowledge.