Month: December 2016

A Year of Conversations about Genomics

By Vivienne Parry OBE, Head of Engagement at Genomics England

When we began the 100,000 Genomes Project, our initial engagement work was with potential participants, affected both by rare disease and cancer. We wanted to know what their principal concerns were. They turned out to be both practical – for instance, what the impact of results might be on their families or if they might be disadvantaged financially by taking part – and ethical, such as use and access to their data. We made sure that we addressed these issues in our subsequent patient literature and other support material. We continue to work with participants through our Participant Panel. They are involved in many different aspects of the Project’s work. For instance, project participants sit on the group that considers applications to access the 100,000 Genomes dataset.

Identifying the key issues

For most patients, the use of genomics in medicine has clear benefits; for diagnosis, greater understanding of their condition and for the development of new treatments, not for them but for others like them in the future. Their views about the issues raised by genomics are coloured by their own experience and are different to those of the general public. But for genomics to be transformational, we need the wider public to be comfortable that the issues raised have been debated and where necessary, addressed. We also needed to know where to focus our engagement efforts in the future.

Working with a variety of partners

We began a year long ‘conversation’ with a variety of public audiences across England; young, older, those likely to have some knowledge, those with none, professionals and politicians, working with a variety of partners including the British Science Association, the Science Museum, University of the Third Age and Verge Magazine.

Socialising the Genome

Drawing from the #glitch animationBut before we began, we wanted to find out how people talked about the issues raised by genomics and what words and language would help them. Social scientist and genetic counsellor Dr Anna Middleton carried out a series of focus groups discovering that people knew more than they thought they did, even if they couldn’t explain it in correct technical terms. Her findings were translated into a series of six films, developed by advertising guru Julian Borra. Online audiences were then able to comment in order to find out what terms and language resonated best with wider audiences. You can find the films here and tell us what you think.

The results of the Genomics Conversation are fascinating and there is a full report here which I urge you to read. There is plenty of nuance as you would expect but there are also some universal red lines. One example is that insurers and marketing companies should not be allowed to access an individual’s genomic data.

We have outlined our next steps:

  • We need to bridge the gap between how professionals speak about genomics and how the public talk about it
  • We need to begin a major programme of work with cancer patients and with older people (the group most likely to be diagnosed with cancer) to find out if their views are different to those of rare disease patients and how best to tailor communications material for them
  • Concerns about commercial access to data were mentioned frequently and we will be working with a number of partners including the new independent taskforce ‘Understanding Patient Data‘, set up by the Wellcome Trust
  • Commercial access to the 100,000 Genomes Project data is critically important if new medicines and treatments for patients are to be developed. We need to work with industry and with other partners to build trust, showing how industry develops medicines and diagnostics.

We are entering a new era of medicine. We must make sure that we both understand and address the concerns of the public and that we earn and continue to retain their trust in this transformational medical advance.

Download the full report here.

Findings from the National Consent Evaluation

By Dr Caroline Benjamin, National Service Evaluation Project Lead and Guild Senior Research Fellow, University of Central Lancashire

Earlier this year, I and colleagues from NHS Genomic Medicine Centres were asked to deliver an evaluation with the aim to further improve the quality of the consent process and materials in the 100,000 Genomes Project.

On behalf of the project team leads, Markella Boudioni (Imperial College London), Eliot Marsden and Antje Lindenmeyer (University of Birmingham), I am pleased to present the results from ‘The National Service Evaluation of the Consent Process and Participant Materials used in the 100,000 Genomes Project’. This evaluation has been a collaborative effort, led by the North West Coast Genomic Medicine Centre,  between the Genomic Medicine Centres, Universities, NHS England and Genomics England. We would like to thank the 100,000 Genomes Project participants, recruiters and focus group members who provided feedback.

The Report will assist Genomic England’s current review of the consent documentation and process, and you can download the full report and summary here. A Background Document is available directly by contacting a member of the project team.

We  encourage wide dissemination of the findings and encourage debate and ongoing evaluation of the consent process for whole genome sequencing within clinical care and transformational projects.

Photo of project team

Project team. L-R: Caroline Benjamin, Markella Boudioni, Antje Lindenmeyer and Eliot Marsden.