The scope of fiduciary duties in translational genomic research.
Carolyn Johnston1, University of Tasmania Hobart 1University of Tasmania, Hobart, Tasmania, Australia
Abstract
In a therapeutic relationship the care of a patient is the doctor’s first concern, whereas the duties of a researcher are focussed in an entirely different direction, to produce generalised knowledge for the benefit of society. In personalised genomic research clinicians may have a role in recruiting their patients to genomic research studies and then translating results into clinical care, so the boundaries between clinical care and research are blurred. This liminal space between research result and translation focusses attention on the scope of the fiduciary duty of a clinician as researcher.
Australian judges have been more circumspect than their North American counterparts in their recognition of the scope of fiduciary duties. Australian orthodoxy points to only proscriptive fiduciary duties, focussing on the protection of property and financial interests of the beneficiary. But the application of fiduciary law may give legal effect to ethical duties of doctors (Grubb, 1994). If robust ethical arguments can be made for the return of uninterpreted genomic sequence data (Thorogood, 2018) to participants in genomic precision medicine studies, fiduciary obligations can provide the legal structure by which these duties are given effect.
This presentation explores the fiduciary obligations of clinician as researcher and argues that the scope of fiduciary duties should extend to the provision of genomic research data, to their patient who asks for it, even if it is not part of clinical care and has no therapeutic application.
Biography
Carolyn is research fellow at University of Tasmania conducting doctrinal and qualitative research on the Returning Raw Genomic Data: Patient Autonomy or Legal Minefield? project (2020 MRFF grant). She teaches at Monash Bioethics Centre, Monash University and is Clinical Ethicist at Monash Children’s Hospital.