Alex RKIn a veritable doorstop of a report published today, 25 April 2023, the Nuffield Council on Bioethics sets out its findings from a two-year in-depth inquiry by an interdisciplinary working group, who benefitted from the evidence and experience shared by many contributors from across the UK and beyond. The report, The future of ageing: ethical considerations for research and innovation. looks at the role that biomedical research and technological innovation has to play in responding to the needs of an ageing population. It focuses on three broad areas of research and innovation:
- Research into biological ageing
- Assistive, monitoring, and communications technologies such as health apps and smart home technologies
- Data-driven detection and diagnosis of age-related conditions.
Developments in these areas offer possible benefits in terms of supporting people to flourish in older age, but they can also raise significant ethical questions about how ageing is perceived, and how older adults are valued in our society. The report sets out to identify the values, principles and factors that are most at stake in the context of research that seeks to influence our experience of ageing, and proposes an ethical framework and toolkit to help everyone involved in conducting research relating to ageing to think through the ethical implications of their work.
The report is dedicated to Baroness Sally Greengross. As the chair of the working group, Bella Starling, notes in her introduction, “Sally was a member of the working group and an unerring advocate for the rights of older people, who sadly passed away in June 2022. We hope that this report bears testament to her passion and influence. It was an honour to work with her.”
The report culminates by setting out 15 recommendations to policymakers, research funders, researchers, regulators and professional bodies, health care professionals and others involved in shaping research, as follows:
- All research stakeholders are encouraged to use the ethical framework and toolkit to guide their thinking and their processes – particularly when scrutinising funding applications and making decisions about the translation of research into An interactive tool on our website provides further prompts and support for those directly involved in research and implementation.
- The Government is urged to establish a cross-governmental strategy to support the aims of achieving five extra healthy years for all and narrowing the inequitable gap in healthy life expectancy, and to support this strategy with an intergenerational public advisory It should also ensure that any new screening or testing programmes for age-related diseases must be accompanied by properly funded services and support for those diagnosed.
- Research funders are encouraged routinely to expect meaningful collaboration between researchers and older adults in any research they fund concerned with ageing; to fund the necessary engagement infrastructure and expertise; to establish minimum demographic datasets to ensure that diversity of inclusion in studies is measured; and to take active steps to encourage partnership working between researchers and We further recommend that funders explicitly take a public health, life-course approach to research funding, recognising the importance of preventative approaches, and prioritising the needs of those who are currently most disadvantaged.
- All the UK Research and Innovation (UKRI) funding councils are encouraged to support interdisciplinary ageing research through the new Ageing Networks.
- The Health Research Authority (HRA) is encouraged to work with the National Institute for Health and Care Research (NIHR) and other partners to identify good practice in involving older adults with impaired mental capacity in research, and to support ethics committees to feel confident in reviewing such research[1]
- The Medicines and Healthcare products Regulatory Agency (MHRA) is urged to continue working with funders and others to address the challenges that may hinder older adults with multiple long-term conditions being included in research relevant to them, and if necessary to consider mandating such inclusion
- The British Standards Institution (BSI) is encouraged to work with the MHRA, Innovate UK, and other stakeholders to develop accredited standards that promote ethical and inclusive research practices with respect to technologies designed to support people to live well in older age.
- Providers of undergraduate education for health professionals and biomedical scientists are urged to ensure that their students gain a rounded, interdisciplinary understanding of ageing, including the ethical considerations set out in our ethical framework and toolkit.
It was particularly interesting reading the report, and, especially, Chapter 2 on attitudes to ageing, in light of the recent (thirteenth) session of the UN Open-Ended Working Group on Ageing for the purpose of strengthening the protection of the human rights of older persons, held between 3 and 6 April 2023 in New York. The working group is considering the existing international framework of the human rights of older persons and identifying possible gaps and how best to address them, including by considering, as appropriate, the feasibility of further instruments and measures, with a report due with its recommendations by the time of the fourteenth session. Any discussion of what is or is not (and what should be) in any such instruments or measures would be equally informed by this Report as I hope will be biomedical researchers and those commissioning and funding such research.
[1] This is, perhaps unsurprisingly, a recommendation that I am particularly interested in; it is very helpful that the Report also specifically singles out the NIHR INCLUDE Impaired Capacity to Consent Framework as a practical tool.
