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.

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