CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies My aims today: Tempering hype: bioethics To suggest how analysis of certain concepts in bioethics as a ‘critical friend’ of can help us to have a deeper and more nuanced emerging technologies debate over regulation of emerging technologies To suggest some of the ways in which bioethics scholarship can go awry – as a pointer to what we should avoid doing A/Prof Ainsley Newson Sydney Health Ethics Sydney School of Public Health The University of Sydney The University of Sydney 1 2 Structure: 1. The innovation landscape 1. The innovation landscape 2. Agendas and challenges 3. Four ways that bioethics can go wrong 4. A role for bioethics in effective regulation The University of Sydney The University of Sydney 3 4 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 1
CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies Enthusiasm for new therapies… – Ethical framings of the technology (applying Hofmann, 2009) – Hopeful principle – Appeals to technology – Appeals to widespread belief – Also prevalent: – Prevalence of (and bias towards) pro-tech arguments – Valorisation of information Credit : National Human Genome Research Institute The University of Sydney The University of Sydney 5 6 From genetics to genomics Before we get too excited… When implementing emerging technologies, it is important to From this… To this… (???) be aware of limits to knowledge People offered testing Everyone offered due to their family Example: Genomics testing history or age – We still don’t know what a lot of the genome does Testing via range of – Genomic data remains a poor predictor of overall health Testing provided by health professionals specialists – Not all genes are penetrant (or DTC) – And some we thought were, aren’t Single gene condition – Interpretation databases remain or small group of WGS aneuploidies imperfect More fine-grained ‘Coarser’ information information The University of Sydney The University of Sydney 7 8 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 2
CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies The culture of medicine and research – Widening definitions of disease and health problems – Appetite for ‘information’ 2. Agendas and challenges – Concern that supply creates demand – Embedded in the culture of health and medicine are: – A fear of ‘missing’ something – Commercial interests – Questions remain regarding: – Prioritisation: what should we prioritise for innovation? – When and how should we say that an innovation is ‘ready’ for wider implementation? The University of Sydney The University of Sydney 9 10 Hype… Hype: the problem – A mechanism to mobilise resources to realise the aspiration of Hype - the intervention (Brown, 2003) – …may increase public perception of disease severity – “ the tendency to exaggerate the value or near-future – …may distort funding allocation application of research results ” (Caulfield, 2016) – …can mean technology is implemented too early, and de-implementation is often difficult – …makes technology alluring – …may lead to a loss of trust – Commercialisation pressures can be one driver Caulfield (2018) claims that we should “frame the knowing hyping of research as an unethical departure from the norms of science.” The University of Sydney The University of Sydney 11 12 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 3
CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies Empowerment Concerns with empowerment – Individuals exerting independent control over a particular – Empowerment can move responsibility for health away from health intervention the state and on to patients – Power, control – This shift has not been made consciously – Emphasis on individual choice – Fairness, health literacy, social determinants of health – Emphasis on taking responsibility – Empowerment can move power from public to corporate Credit: Mervyn Chan; Unsplash – A rhetoric of ‘empowerment’ is prevalent institutions (e.g. personal genomics market) in many health systems – Does empowerment overly responsibilise individuals, at the expense of clinical leadership? (Chiapperino & Tengland, 2015) The University of Sydney The University of Sydney 13 14 Why isn’t 3. Four ways that bioethics doing bioethics can go wrong as well as it could? Photo by Hans-Peter Gauster on Unsplash The University of Sydney The University of Sydney 15 16 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 4
CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies Problem 1: Uncritical Acceptance of Technology Problem 2: Arguing within limited parameters – Scholars in bioethics can assume perfect technologies – If harm < benefit , then ‘full steam ahead’ – While thought experiments are fine, such examples are then Yet this approach is too narrow, and will inevitably lead to technology taken up by others outside our discipline being introduced. – Used to justify implementation It also ignores the distribution of benefits and harms (they can fall on different parties) – Concepts become shallow (e.g. autonomy) – Risks missing the ethical relevance of limits to technologies – If provide full information , then obligations to patients are met This is not how people actually behave Photo by Holger Link on Unsplash Credit: Lysander Yuen, Unsplash The University of Sydney The University of Sydney 17 18 Problem 3: Dichotomising the debate Problem 4: the problem of the perfect patient – In bioethics, often the most significant debates happen at the ‘poles’ – People and patients are viewed as highly resourced, health – There is less debate on the ‘middle literate individuals living in high income settings, with little or no ground’ interdependencies – This is exacerbated by pressures such as – With technologies such as genomic testing, grant funding and gaining media context (and family!) are vital attention – hard to be nuanced – Attempting to take the middle ground can lead to criticism from both sides Credit: Siora Photography via Unsplash Credit: Miguel Bruna, Unsplash The University of Sydney The University of Sydney 19 20 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 5
CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies If bioethics scholars can better appreciate the concepts and problems raised here, then our field will be able to have a more productive influence 4. A role for bioethics in effective regulation – as ‘critical friends’ – on the regulation of emerging technologies. The University of Sydney The University of Sydney 21 22 Balancing enthusiasm and restraint – Consider why technology is being introduced and what this offer might achieve (for whom, and when) – Resist uptake rather than face reducing or withdrawing later – Prospectively articulate values and purposes, defended by ethical reasoning, rather than letting the technology do this – Develop prospective ethical frameworks for implementation – End point: critical implementation (adapted from Hofmann) – Question assumptions, justify claims The University of Sydney The University of Sydney 23 24 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 6
CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies Acknowledgements Funding: • Sydney Health Ethics, University of Sydney • Centre for Bioethics, Chinese University of Hong Kong Research Assistance: • Pat McConville Thank-you The University of Sydney The University of Sydney 25 26 References cited – Brown N. “Hope against hype - Accountability in biopasts, presents and futures .” Science Studies , 2003; 16(2):3-21. – Caulfield T. “Ethics Hype?” Hastings Center Report, 2016; 46(5): 13-16. – Caulfield T. “Spinning the genome: Why science hype matters.” Perspect Biol Med . 2018; 61(4):560-571. – Chiapperino L, & Tengland P-A. "Empowerment in Healthcare Policy Making: Three Domains of Substantive Controversy." Health Promotion Journal of Australia, 2015; 26(3): 210-15. – Hofmann B. “Fallacies in the arguments for new technology: the case of proton therapy.” J Med Ethics . 2009; 35(11): 684-7. The University of Sydney 27 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 7
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