CUHK Workshop on Regulation of Emerging 12/06/2019 Technologies My - - PowerPoint PPT Presentation

CUHK Workshop on Regulation of Emerging Technologies 12/06/2019 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 1

The University of Sydney

Tempering hype: bioethics as a ‘critical friend’ of emerging technologies

A/Prof Ainsley Newson Sydney Health Ethics Sydney School of Public Health

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My aims today: To suggest how analysis of certain concepts in bioethics can help us to have a deeper and more nuanced 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

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Structure:

• 1. The innovation landscape
• 2. Agendas and challenges
• 3. Four ways that bioethics can go wrong
• 4. A role for bioethics in effective regulation

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• 1. The innovation

landscape

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CUHK Workshop on Regulation of Emerging Technologies 12/06/2019 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 2

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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

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Credit: National Human Genome Research Institute

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From genetics to genomics

From this… To this… (???) People offered testing due to their family history or age Everyone offered testing Testing provided by specialists Testing via range of health professionals (or DTC) Single gene condition

• r small group of

aneuploidies WGS ‘Coarser’ information More fine-grained information

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Before we get too excited…

When implementing emerging technologies, it is important to be aware of limits to knowledge Example: Genomics – We still don’t know what a lot of the genome does

– Genomic data remains a poor predictor of overall health

– Not all genes are penetrant

– And some we thought were, aren’t

– Interpretation databases remain imperfect

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CUHK Workshop on Regulation of Emerging Technologies 12/06/2019 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 3

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• 2. Agendas and

challenges

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The culture of medicine and research

– Widening definitions of disease and health problems

– Appetite for ‘information’

– 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?

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Hype…

– A mechanism to mobilise resources to realise the aspiration of the intervention (Brown, 2003) – “the tendency to exaggerate the value or near-future application of research results” (Caulfield, 2016) – …makes technology alluring – Commercialisation pressures can be one driver

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Hype: the problem

Hype - – …may increase public perception of disease severity – …may distort funding allocation – …can mean technology is implemented too early, and de-implementation is often difficult – …may lead to a loss of trust Caulfield (2018) claims that we should “frame the knowing hyping

• f research as an unethical departure from the norms of science.”

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CUHK Workshop on Regulation of Emerging Technologies 12/06/2019 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 4

The University of Sydney

Empowerment

– Individuals exerting independent control over a particular health intervention

– Power, control – Emphasis on individual choice – Emphasis on taking responsibility

– A rhetoric of ‘empowerment’ is prevalent in many health systems

Credit: Mervyn Chan; Unsplash

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Concerns with empowerment

– Empowerment can move responsibility for health away from the state and on to patients

– This shift has not been made consciously – Fairness, health literacy, social determinants of health

– Empowerment can move power from public to corporate institutions (e.g. personal genomics market) – Does empowerment overly responsibilise individuals, at the expense of clinical leadership? (Chiapperino & Tengland, 2015)

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• 3. Four ways that

bioethics can go wrong

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Why isn’t bioethics doing as well as it could?

Photo by Hans-Peter Gauster on Unsplash

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CUHK Workshop on Regulation of Emerging Technologies 12/06/2019 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 5

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Problem 1: Uncritical Acceptance of Technology

– Scholars in bioethics can assume perfect technologies – While thought experiments are fine, such examples are then taken up by others outside our discipline

– Used to justify implementation – Concepts become shallow (e.g. autonomy)

– Risks missing the ethical relevance of limits to technologies

Photo by Holger Link on Unsplash

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Problem 2: Arguing within limited parameters

– If harm < benefit, then ‘full steam ahead’

Yet this approach is too narrow, and will inevitably lead to technology being introduced. It also ignores the distribution of benefits and harms (they can fall on different parties)

– If provide full information, then obligations to patients are met

This is not how people actually behave

Credit: Lysander Yuen, Unsplash

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Problem 3: Dichotomising the debate

– In bioethics, often the most significant debates happen at the ‘poles’ – There is less debate on the ‘middle ground’ – This is exacerbated by pressures such as grant funding and gaining media attention – hard to be nuanced – Attempting to take the middle ground can lead to criticism from both sides

Credit: Siora Photography via Unsplash

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Problem 4: the problem of the perfect patient

– People and patients are viewed as highly resourced, health literate individuals living in high income settings, with little or no interdependencies – With technologies such as genomic testing, context (and family!) are vital

Credit: Miguel Bruna, Unsplash

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CUHK Workshop on Regulation of Emerging Technologies 12/06/2019 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 6

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• 4. A role for bioethics in

effective regulation

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If bioethics scholars can better appreciate the concepts and problems raised here, then our field will be able to have a more productive influence – as ‘critical friends’ –

• n the regulation of emerging technologies.

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Balancing enthusiasm and restraint

– Consider why technology is being introduced and what this

• ffer 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

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CUHK Workshop on Regulation of Emerging Technologies 12/06/2019 Associate Professor Ainsley Newson: ainsley.newson@sydney.edu.au 7

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Thank-you

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Acknowledgements

Funding:

• Sydney Health Ethics, University of Sydney
• Centre for Bioethics, Chinese University of Hong Kong

Research Assistance:

• Pat McConville

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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.

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