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What’s it like to be involved in the 100,000 Genomes Project?

AIMS:

Our research aims are to:

  • understand the motivation of people who agree to take part in genomics research; their experience of receiving information, giving consent and taking part; their attitudes to data sharing, governance and confidentiality and their views about feedback and use of their data for research and clinical care;
  • understand why some people who are invited to take part in the 100,000 Genomes Project refuse to do so or withdraw;
  • learn about the experiences of clinicians who ask people to take part in the Project.

Why this is important:

Genomics is set to be a key component of healthcare in the future, and part of its success is dependent on public acceptability and understanding of genomic medicine, its risks and benefits.

Understanding how professionals, the public and patients think and feel about genomics will be key to ensuring that future clinical practice, service design and the information provided to patients, their families and the public is informed by these thoughts and feelings.

The 100,000 Genomes Project is the first project of its kind to sequence 100,000 genomes in the UK. This project will improve the experience of participants in the project and thereby improve the likelihood of the Project achieving its goals.

METHODS:

The Oxford Health Experiences Institute will work in collaboration with the Policy Innovation Research Unit (PIRU) at the London School of Hygiene and Tropical Medicine to understand the experience of those involved with the 100,000 Genomes Project. The researchers will work closely with the Genomic Medicine Centres (GMCs), responsible for recruiting around 70,000 people into the project.

The 18-month study will involve in-depth interviews with around 40 people invited to take part in the 100,000 Genomes Project, including some who decline or withdraw, and around 40 interviews with health professionals with different levels of experience in recruiting to the 100,000 Genomes Project. We will also seek the views of a wider group of patients and members of the public about genome sequencing and health data sharing more generally.

How this will benefit patients:

This study will support the GMCs to reach their recruitment goals on the 100,000 Genomes Project and develop training resources for professionals. It will provide insights to inform clinical practice and service design of genomics medicine in the future.

An online resource of patient experience videos on Healthtalk.org will be made available to the public to support those who are invited to participate in this project and other genomics research.