Blog23rd September 2019

Choosing our next in-depth topic: ageing; genomics; or technology in social care? 

Sarah Walker-Robson

Now it is coming up to decision time about our next in-depth project, which will begin in early 2020.

Earlier this year we blogged about our horizon scanning activities, including our infographic showing the range of topics on our radar. As to-do lists go, this would be a fairly hefty one, so we have developed thorough topic selection processes and criteria to help us work through the options. (If you are interested in knowing more about how we select and prioritise our work topics, here’s the lowdown).

So far this year, we have published bioethics briefing notes on disagreements in the care of critically ill children and on medical implants, and we have held a workshop exploring developments in epigenetics. We are also working on a bioethics briefing note on the future of meat production, due to be published in the coming months. This is alongside our current in-depth projects on research in global health emergencies (such as the current Ebola crisis in the DRC) and genome editing in farmed animals.

Now it is coming up to decision time about our next in-depth project, which will begin in early 2020. Council members began to discuss the options at our last Council meeting on 18 July, but without a final decision yet.

In the meantime, we thought we’d open up the discussion – so, here, in no particular order, are our top three contenders:

• The future of ageing and dying
• Genomic futures
• Technology and social care

Frankly, we wish we could do all three, but there can only be one winner (at least for now). Read on for a brief introduction to each of these topics and the key questions we might expect to address in an in-depth inquiry.

#1 The future of ageing and dying

In most countries, people are living longer and healthier lives than ever, but are still spending a significant number of years in poor health towards the end of their lives. With the number of older people in society predicted to increase markedly over the next 25 years, in the last decade there has been a significant slowdown in mortality improvements, with statistics from England and Wales showing age-standardised mortality rates have been declining at a slower rate since 2010. In 2018, deaths due to dementia and Alzheimer disease continued to increase and remained the leading cause of death, accounting for 12.8% of all deaths registered in England and Wales.

Key issues we might expect to cover in a project on this area would include:

• Developments in geroscience – a field of research exploring the biological processes underlying ageing. Researchers working in this field believe that intervening in these processes could be a more efficient way of increasing health in the older population than tackling age-related conditions individually.
• Research on epigenetics – this field of research is in the early stages, but potential biomarkers for measuring the different influencers on ageing are starting to be identified.
• Medicalisation of ageing – Is ageing and dying being increasingly medicalised and are other elements of ageing, such as relationships and independence, being side-lined?
• End of life care – in a fragmented health and care system, what are the issues surrounding access to and understanding of palliative care.

Possible questions for an in-depth inquiry might include:

1. How might science and medicine affect how we age and die in future? Are advances in medicine helping or hindering people’s experiences of ageing and dying?
2. How can medical professionals strike an appropriate balance between treating life-limiting conditions with a still-expanding range of interventions, and having honest conversations about death and dying?
3. What could be the consequences of increasing health and life span?

#2 Genomic futures

Advances in genome sequencing technology, and convergence with other developing technologies such as AI, has led some to suggest we are on the cusp of a long-promised genomics revolution. These are some of the recent developments we would expect to cover:

• The potential impact of the NHS Genomic Medicine Service, which was introduced in 2018 for patients with rare diseases and cancer, and extended to all children with serious disease in 2019.
• The potential for whole genome sequencing to be used in population screening programmes, including prenatal, newborn and adult programmes (we touched on this briefly in our briefing note on whole genome sequencing of babies).
• Scrutiny of the global commercial genomics sector amidst the rising popularity of direct-to-consumer DNA tests.
• Concerns around the use of predictive testing for multifactorial conditions (using polygenic risk scores) and the high rate of false positives associated with some kinds of testing.

Possible questions for an in-depth inquiry might include:

1. How can innovation using genomic sequencing technology be deployed in ways that meet the needs of patients and in alignment with the public good?
2. How should the regulation and oversight of genomic testing in public and private arenas adapt to changing contexts of healthcare, research and economic development?
3. What could be the implications for wider society of continued rapid adoption of genomic sequencing technology in the health and research sectors, both private and public?

#3 Technology in social care

Technology has been held up as having the potential to help improve the social care system in the UK, which is under considerable strain as increased demand for care is coupled with a gap in funding for adult social care services. The range of technologies and key issues we’d be likely to explore would include:

• Digital systems including those using data analytics, algorithms or AI could be used to improve cost efficiency and link up health and social care. However, data use and monitoring and surveillance of users, raise questions arise around dignity, stigmatisation, privacy and information security.
• Assistive technologies, wearables and robotics could provide practical, social and emotional support in the home for individuals as well as offering the possibility of monitoring and responding to user needs remotely. But concerns have been raised about the potential for a loss of human contact and there are questions about whether technologies would help to address or exacerbate loneliness and social isolation.

Possible questions for an in-depth inquiry might include:

1. What roles can technology play in addressing current pressures and challenges in UK social care?
2. How do/should technological solutions fit into the bigger picture of meeting social care needs?
3. What ethical issues are raised by current uses of technology in social care and how can future technologies be developed and used in an ethical way?

May the best topic win

We think any of these topics would make a great project, and we have a tricky decision choosing which one to start next. If you have any thoughts or views on which of these you think should be prioritised, we’d be delighted to hear your feedback – please do leave us a comment below or take our Twitter poll.

And finally….

These are the three topics in contention for our next in-depth project, but we will shortly be announcing other projects as part of our active response programme (watch this space). As shown in our infographic, we are always updating and refining our topics to keep in view. We welcome suggestions any time.