Reconceptualising informed consent for the modern era

Reconceptualising informed consent for the modern era

Sarah Heynemann^1,2, Stephen Honeybul³, Supriya Subramani⁴, Anson Fehross^5,6,7, Narcyz Ghinea^8,9,10, PhD candidate, Sydney Health Ethics, School of Public Health, Faculty of Medicine and Health, The University Of Sydney Sydney², Clayton Victoria³, Western Australia Australia^Sydney, Australia 5^{New South Wales}, 6 Sessional Academic, Department of Philosophy, Macquarie University^Australia,

¹PhD candidate, Sydney Health Ethics, School of Public Health, Faculty of Medicine and Health, The University Of Sydney, Sydney, New South Wales, Australia
²Teaching Associate, Monash Bioethics Centre, School of Philosophical Historical and International Studies, Faculty of Arts, Monash University, Clayton, Victoria, Australia
³Consultant Neurosurgeon, Department of Neurosurgery, Sir Charles Gairdner Hospital, Perth, Western Australia, Australia
⁴Lecturer, Sydney Health Ethics, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
⁵Sessional Academic, Sydney Health Ethics, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
⁶Sessional Academic, Department of Philosophy, Macquarie University, Sydney, New South Wales, Australia

Abstract

The ethical and legal import of the principle of informed consent has a longstanding history within both routine care and clinical research settings. Likewise, basic elements of the informed consent procedure are generally accepted, including: assessment for capacity of the individual (or proxy) specific to the decision to be made, provision of adequate information for decision-making, being granted the opportunity to ask questions, and freedom from coercion. What remains somewhat ambiguous, however, is how to define such elements, how to apply them effectively in real-world contexts, and the relationship of informed consent procedures to understanding. Moreover, it may be argued, that a disconnect exists between approaches which meet procedural criteria for informed consent (‘doing it right’) versus approaches optimised for understanding, as well as respect for individuals concerned (‘doing it well’). This ‘in-conversation’ session will consider persistent tensions with the principle of informed consent in the modern era, including challenges prompted by (1) the modern cancer clinical trials landscape, in which research and care are increasingly intertwined and (2) decision-making in acute, high-risk (neuro-surgical) scenarios, in which competency is limited or absent. Additionally, critical engagement with informed consent’s politics of practice will be undertaken, including with respect to (1) embodiment and contextualisation as requisite for respect in medical decision-making, (2) informed consent as a participatory and more than ‘once-off’ process, and (3) delivery of information in a manner as to prioritise reduction of decisional regret in individuals.

ADDITIONAL INFORMATION
This ‘in-conversation’ abstract is proposed as consisting of the 5 listed speakers (Dr Sarah Heynemann, Prof Stephen Honeybul, Dr Supriya Subramani, Dr Anson Fehross, Dr Narcyz Ghinea) with the Q&A ‘in-conversation’ to be moderated by Prof Ian Kerridge.

Biography

Speaker 1. Dr Sarah Heynemann is a Melbourne-based medical oncologist. PhD candidate with Sydney Health Ethics exploring ethical and epistemic implications of novel and emerging trends across the cancer clinical trials landscape. Involved in medical student ethics education and an early-career representative on the scientific committee of the Thoracic Oncology of Australasia (TOGA) trials co-operative group.

Speaker 2. Professor Stephen Honeybul is a full-time hospital-based consultant neurosurgeon with subspecialty interests in neurovascular, neurotrauma and stem cell driven cranial reconstruction. Research interests in surrogate decision-making in the context of acute severe traumatic brain injury.

Speaker 3. Dr Supriya Subramani’s research interests lie at the intersection of emotions, healthcare ethics and behaviour. Ongoing projects concerned with how emotions, moral epistemology and everyday interactions influence one’s moral self; and how power is negotiated and challenged by vulnerable individuals (patients; immigrants) in interpersonal interactions and institutions, particularly in healthcare settings.

Speaker 4. Dr Anson Fehross completed his PhD at Sydney Health Ethics, University of Sydney (USYD). Current research includes a new model for substituted decision making integrating cognitive psychology, philosophy of medicine, and psychiatry, alongside projects exploring group decision making and consent. Sessional academic at USYD, UNSW, and Macquarie University.

Speaker 5. Dr Narcyz Ghinea’s research explores all facets of just access to medicines. This includes fair medicine pricing, cost-related non-adherence, alternate access mechanisms, and physician responsibilities in an era of high-cost drugs. Work informed by extensive experience working in the public hospital system and government healthcare agencies.

In-Conversation Session Q&A Moderator: Professor Ian Kerridge is a consultant haematologist and bone marrow transplant physician at Royal North Shore Hospital, as well as Professor of Bioethics and Medicine, Sydney Health Ethics, The University of Sydney.