100, 000 Genomes Project: Consent Evaluation

By studying the function and the structure of the human genome (genomics) scientists can begin to establish the precise causes of disease. The 100 000 Genomes Project was launched in 2013 to sequence 100, 000 whole human genomes, from NHS patients, by 2017 (https://www.genomicsengland.co.uk/the-100000-genomes-project/). By focusing on sequencing genomes from NHS patients with rare inherited diseases or cancer, the aim of this project is to use the information within the genomes to understand the causes of disease and tailor medical treatments to patients. Through a greater understanding of the human genome:

  • Patients will benefit immediately. For instance, a conclusive diagnosis of a patient’s inherited disease may be possible, or a specific cancer treatment could be chosen based on the individual’s cancer
  • Patients will benefit in the future. Through studying the genomes within this project, the findings will help inform diagnoses and treatment for future patients.

For patients to participate in trials such as this, they need to be fully informed in order to agree to participate (consent). UCLan staff member Dr Caroline Benjamin and colleagues from the College of Health and Wellbeing, as well as NHS Genomics Medicine Centres, were asked to evaluate the consent process and participant materials used in the 100, 000 Genomes Project. As part of their assessment they were asked to provide suggestions for improvement, in order to further improve the quality of the process and materials.  Their Results of the National Consent Evaluation are available here, both as a summary and a full background document: https://www.genomicsengland.co.uk/consent-evaluation/

This evaluation has been a collaborative effort, led by the North West Coast Genomic Medicine Centre, (hosted Liverpool Women’s Hospital NHS Trust with sites including the Royal Preston Hospital). The team included members the 13 National Genomic Medicine Centres, Universities, NHS England and Genomics England. Their evidence will be used to further inform the development of consent materials and processes within the 100, 000 Genomes Project.

project-team

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

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