What We Do

Imperial College London

Perspectives on consent and participation

Helen Ward
Rozlyn Redd
Will Viney
Sophie Day

Personalised medicine aims to replace a one-size-fits-all approach with the ‘right treatment for the right person at the right time’. Achieving this requires broad participation of patients willing to share data and biological samples which are then analysed and utilised in the personalisation process.

Previous work suggests that certain categories of participant are systematically under-represented in biobanks, resulting in biased data sets. It is possible therefore that “people like you” are not well represented in these biobanks; we are interested in how this affects the practice of personalised medicine, and whether different approaches to consent, sharing and use of data may help to reduce inequity.

Our review of the published literature (in collaboration with Dr Bethan Davies and Professor Paul Elliott at Imperial college) indicates that there is no consensus on either the definition, purpose or need for representativeness in biobanks. Some argue that it is unnecessary or even counter-productive to include a representative sample of the population, but there is little discussion of how this may exclude some marginalised groups from the benefits of translational research.

Our ‘Perspectives on Consent’ empirical project, in which we were documenting the establishment of a local biobank, the Imperial Health Knowledge Bank, was interrupted by the COVID-19 pandemic when much clinical research was suspended.  The infrastructure was largely re-purposed for research on COVID-19 and we shifted our resources towards understanding participation and bias in large population studies in the pandemic.

Although some processes were interrupted, others were accelerated during the pandemic, particularly the linkage of different datasets and making those available in anonymised form for research. We are continuing to track these developments which are building up the data infrastructure and bioresources necessary for personalising practices in health. We will summarise findings in publications towards the end of the project, continuing to reflect on the impact of missing people and missing observations in big data.

The “perspectives on consent” study has approval from the NHS Health Research Authority, ID: 245816