University of Adelaide's Professor Ian Olver received the 2021 NHMRC Ethics Award in recognition of his significant contribution to Australian health and medical research ethics over the last decade. As chair of NHMRC’s Australian Health Ethics Committee, and as a valued member of NHMRC Council from 2012 to 2018, his balanced and considered leadership style and willingness to engage sensitively on tough issues supported a wider understanding of the ethical impact of emerging health and medical research innovations and technologies.
The ability to combine disciplines in research provides an opportunity for innovative outcomes. When I completed my medical oncology training in the USA and returned to Peter MacCallum, I was asked to sit on their research ethics committee and then sent to the first of the Monash University short courses in bioethics.
This led to a PhD which I could pursue part time with a full clinical load. To be able to contribute something new, I wanted to explore a line of research which would mesh with my primary field of oncology. I chose end-of-life decision-making and explored the philosophical arguments around the value of life. My supervisor was Peter Singer and although our positions were contrasting, he didn’t try to change mine, he simply made me argue it rigorously.
My arguments, which developed a highest value of life ethic for life and death decision-making were informed by my clinical oncology experience. I subsequently used philosophical argument to defend that position in the public forums on euthanasia over three decades. Over that time the public position, which initially had opposed euthanasia, changed to being increasingly focused on individual rights. The public debate, however, did not evolve beyond the highlighting of highly emotive cases of difficult deaths (irrespective of whether the patients had received appropriate access to palliative care and counselling) as a rationale for allowing state-sanctioned suicide and many politicians perceived this as the popular view of the community.
In research, crossing disciplines of ethics and oncology allowed us to secure funding to explore end-of-life decision-making in patients with cancer, focusing on do-not-resuscitate orders. The main lesson from patients was that there could be no one-policy-fits-all approach. For example, there would be diverse views on when the discussion should occur within the trajectory of the illness.
Another fruitful area for research was consent. We surveyed patients who had signed consent forms for standard therapy or trials and found that no more that 80% had read all of the form, only 60% understood all of it and the recall of information was poor. A randomised trial of an interactive multimedia presentation of the information against the standard written form showed no improvement in recall. However, we demonstrated that 25% patients were depressed and 33% has some degree of anxiety at the time they gave consent, so it was understandable that overall recall was poor when information is being given at a time of stress. We concluded that reiterating the information at subsequent visits would ensure a more complete understanding over time.
Consent was also an issue when I first I joined the Australian Health Ethics Committee (AHEC). The National Statement on Ethical Conduct in Human Research outlined the requirements for obtaining individual consent for participants in research and allowed a waiver of consent for some low-risk research. However, the Statement neither included nor specifically excluded what was popularly known as opt-out consent. This is where, following dissemination of information to the target population of a research project, consent is presumed unless individuals specifically opt out. It can be utilised for the analysis of registries and other data collections where it would be impractical to obtain consent from every individual and where the validity of the outcome requires the highest possible participation. After much debate, an opt-out approach to consent was eventually added to the National Statement for low-risk research, such as epidemiological research on de-identified data, often to inform policy decisions and where data security standards are maintained.
Research ethics must keep pace with advances in science, However, ethical deliberation does not occur in a vacuum. This was brought home to me when the Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research were being revised. The burning issue here was whether sex selection could be ethically permitted under some circumstances. Now, allowing this for a first baby could lead to gender bias and would clearly be ethically problematic. However, another view is that if a couple had two children of the same sex and desperately desired the experience of parenting children of both sexes this could be acceptable. However, the public consultations and indeed the full AHEC, which is a microcosm of the public, demonstrated that there were strongly held opposing views. A changed ethical view could be stated but it was clear that from the societal and political viewpoint we were not yet ready for a change in policy.
Other current complex research questions such as in xenotransplantation or mitochondrial replacement therapy are not as prominently in the public consciousness, but require similar detailed ethical reflection informed by multiple disciplines.
The engagement in ethical decision-making has been an ongoing source of challenge which has enriched my career. It provided an opportunity for research innovation by crossing disciplines and the privilege of contributing to the work of the NHMRC in promoting the highest possible ethical standards for Australian research.
A recent paper from Professor Olver: Communicating cancer and its treatment to Australian Aboriginal and Torres Strait Islander patients with cancer: a qualitative study in Supportive Care in Cancer.