Our core purpose is to protect and promote the interests of patients and the public in health and social care research. To achieve this, we follow the guiding principles set out in our strategy and ensure that research is ethically reviewed.
In addition to our research approvals process, which includes ethical review, we actively work with organisations in the health and research sector to continually improve and support best practice.
What we are working on
We are currently looking at how research participants are treated if they lose their capacity after consenting to take part in longitudinal research, which can last decades or even a lifetime.
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.
We held an event with Genomics England and Our Future Health to hear a range of perspectives about this topic.