SWGMC to take part in 100,000 Genomes Project national evaluation research

On 27 May 2016, Genomics England will welcome patient and public representatives from across three NHS Genomic Medicine Centres from the South West, West of England and Wessex to take part in a single focus group looking at the national evaluation of consent materials for the 100,000 Genomes Project.

The 100,000 Genomes Project aims to sequence 100,000 whole genomes from about 70,000 people across England. The project is classed as a service transformation project, which means it must follow established legal and regulatory standards for seeking the informed consent of its participants or those who could consent on their behalf.

Consent is essential, but can be complicated. Any participant in the project needs to understand what their information will be used for, both now and in the future. It’s called informed consent.

This national study explores the initial stages of recruitment for the 100,000 Genomes Project. Specifically the study looks at the facilitators and barriers that may be in place to establishing informed consent. Currently, researchers are looking at the complexity of the consent, and the logical flow of documentation through the process.

The two-hour meeting will enable Imperial College (West London GMC) – who are part-funding and carrying out the research together with West Midlands NHS GMC and North West Coast NHS GMC – to gather important patient and public feedback on the consent materials and processes.

As part of the National Service Evaluation project telephone interviews lasting 30-60 minutes will also be conducted for participants who are unable to attend the focus group.

The findings of the study will be recorded and a report will be produced which will be shared with NHS England and Genomics England. The report will be presented to stakeholders and the public at conferences and will be published in peer-reviewed journals. Short reports may also be disseminated to patient groups and other interesting parties.

For more information about the study contact Dr Markella Boudioni, Imperial College London – mboudion@imperial.ac.uk.

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