Consent & Ethics

Genomics England and the NHS England Genomic Medicine Centres will, through the 100,000 Genomes Project, analyse whole genome sequences from tens of thousands of patients and their relatives. Healthcare professionals seeking consent from potential participants interested in joining the Project can take this training course to learn the key steps of the Project’s consent protocol, what to consider when preparing for the consent conversation, and how to address patients’ questions and concerns about joining the Project.

Accreditation: 2 CPD credits, The Royal College of Physicians

Note:

Learners who have successfully completed this course can access a PDF version of the content here.

About the course

Why take this course?

It is vital that patients considering participating in the 100,000 Genomes Project make an informed decision. This course will prepare you, as their healthcare professional, to support them in doing so. It will also be of interest to others for whom having an understanding of the consent process would be helpful.

Who is the course aimed at?

This module has been developed for healthcare professionals working in NHS England Genomic Medicine Centres and their local delivery partners who will undertake the consent conversation with potential participants interested in joining the 100,000 Genomes Project.

What will I learn?

You will learn to effectively prepare for the consent conversation; confidently discuss the details of the Project with the participant, address their concerns or questions about participating in the Project, and ensure that consent, where it is offered, is valid.

How will I learn?

The course includes textual content, video scenarios, infographics, and links to further reading and support. It has 3 main units, each with a number of sub-units (or ‘Lessons’) plus FAQs and Glossary.

You can work through the course at your own pace and in any order you choose, returning to any section you wish. On completion of the course, a summative assessment will provide an opportunity to demonstrate what you have learned.

Changing the size of the text: You can alter the size of the text on your screen by pressing and holding Ctrl (PC) or Cmd (Mac) on your keyboard and either scrolling the middle button on your mouse or clicking the + or – key on your keyboard.

Acknowledgements

This Health Education England online course has been developed in collaboration with:

  • Writing and subject matter expertise: Dr Anna Middleton, Wellcome Trust Sanger Institute; Dr Christine Patch, Guy’s and St Thomas’; Siobhan Chan, Progress Educational Trust; Dr Denise Williams, Dr Kai Ren Ong and colleagues at Birmingham Women’s NHS Foundation Trust’s Clinical Genetics department
  • Advisory group members: Dr Laura Boyes, Birmingham Women’s NHSFT; Mary Elford, Health Education England; Dr Tom Fowler, Genomics England; Alison Hall, PHG Foundation; Stephanie Jones, John Radcliffe Hospital, Oxford; Jane Niederer, Churchill Hospital, Oxford; Dr Elizabeth Ormondroyd, University of Oxford; Prof Michael Parker, Genomics England; Vivienne Parry, Genomics England; Jessica Wright, University of Oxford
  • Genomics England: Dr Jeanna Mahon-Pearson, Laura Riley, Dr Clare Turnbull, Dr Ellen Thomas and colleagues
  • HEE Genomics Education Programme team: Dr Michelle Bishop, Sandie Gay, Áine Kelly, Michelle Madeley,Tim Packwood, Dr Anneke Seller, Stuart Sutherland, and colleagues