Photo of a previous Citizens' Jury run by Involve. A room full of participants taking part in a discussion, some with their hands up. There is a board covered in yellow and pink post-it notes where notes have been written by jury memebers.

Finding ways to listen

Date: 4 May 2022

A recent national committment to increased public involvement coincides with a step change in our own efforts to enable the public to contribute to genomics research.

Earlier this month, many of the UK’s leading research organisations, funders and regulators came together to sign up to “a bold new shared commitment to improve public involvement in research”. This commitment includes four main pledges that it is hoped will support researchers to do more (and better) public involvement, specifically:

  • listening to and learning from people and communities and applying and sharing that learning
  • building and sharing the evidence of how to involve the public and the impact this has
  • supporting improvements in equality, diversity, and inclusion in public involvement, and
  • promoting the UK Standards for Public Involvement.

This commitment to increased public involvement in research coincides with a step change in our efforts in Wellcome Connecting Science to enable the public to contribute to shaping genomic research.

In the Research and Dialogue team our aim is to bring public and community perspectives into genomics research and policy. Our work involves establishing connections between different public groups and the science that takes place on campus. In recent years, we have conducted both quantitative (questionnaire based) and qualitative (interview or focus group based) research into what different public groups think about the collection and sharing of genomic data, the duties of doctors in relation to the confidentiality of genetic information within families, and the passive collection of health-related data from digital devices.

We are also exploring ways for more active conversations with the public, to bring new perspectives and a diverse range of voices into the work of the Genome Campus. Hearing from those with lived experience or those who are under-represented in the research and policy workforce might shift the way we go about research and even introduce new, previously unconsidered questions. This means thinking hard about who ‘the public’ are. It is clear, for example, that patients with a rare genetic condition have different experiences and may reasonably have different priorities than people contributing to a biobank. Even within communities where you might see some alignment in views (for example among families affected by a genetic condition) there may still be differing and strongly held perspectives. Further, some communities and groups have also historically been marginalised in research and in policy, a legacy that can affect how they engage with science and how we engage with them.

The work we do and the methods we use need to reflect the diversity of public audiences for genomics. To help us think about this and to challenge us, we have established a Community Advisory Panel. The members of this panel are our critical friends and having met several times now, their insight is proving invaluable.

These activities are as much about actively listening as talking. They can happen on a range of scales, they might begin with focus groups or representative bodies, they might be informal or more structured in their nature. For example, we are holding a Citizen’s Jury on Human Genome Editing later this year, bringing members of the public and scientists together on campus to produce recommendations for UK policy on gene editing. Regardless though, our activities will be led by the public questions, interests and concerns. They should be surprising, they may well be challenging. We certainly hope the ‘public’ will do most of the talking. Scientist or citizen alike, if you’re interested in being involved in any of this work, or feel it would be useful to you, please do get in touch with us.