Roundtable event to discuss issues of capacity whilst taking part in long-term research

Last updated on 22 Sep 2023

The HRA facilitated a discussion between members of the public, experts and researchers, to better understand the challenges and implications of how participants of longitudinal research are treated if they lose their mental capacity during the course of a study.

The roundtable event brought together a broad range of perspectives in a conversation about the responsibilities of research organisations when mental capacity is affected, taking into account legal, ethical and public perception considerations.

Longitudinal research can take place over decades or even a lifetime, by drawing data from health records. Because of the long periods of time involved, some participants may lose the ability to make decisions for themselves. This could be due to a medical condition such as dementia, a cognitive impairment, or an injury. This raises ethical and practical issues about the right thing to do for the person taking part, particularly around their ability to consent to continued involvement.

The HRA worked with Genomics England and Our Future Health to plan the event, which was chaired by Vivienne Parry OBE, science writer, broadcaster, and head of engagement at Genomics England. Vivienne led discussions through various scenarios with attendees, exploring how to ensure that those taking part in longitudinal research are treated with care and respect.

Becky Purvis.jpg

'We were really pleased to facilitate this important discussion to better understand different viewpoints on how people are treated if they lose capacity while taking part in long-term research. Our role is to create conversations about research issues that matter to people. Events such as this help us identify where more evidence is needed to support the HRA to make it easier for organisations to do research that people can trust.’

Becky Purvis, Director of Policy and Partnerships

Genomics England was set up by the Department of Health and Social Care to enable others to deliver genomic healthcare and conduct genomic research, partnering with leading researchers from academia and the life sciences sector. Genomic research focuses on a person’s DNA and genes.

Our Future Health is a collaboration between the public, charity, and private sectors to build the UK’s largest health research programme which will look to develop new ways to prevent, detect and treat disease. The initiative aims to recruit five million volunteers collecting multiple sources of health information including genetic data.

Back to news and updates