Our Patient Charter on genome sequencing

Our third Patient Charter “Genome sequencing: What do patient think?” has now been published. Through four online engagement sessions - which included text, podcasts, videos and questions - we sought the views of patients on genome sequencing.

On Wednesday 11th February at the Wellcome Trust, we are launching our Charter in front of an audience of expert stakeholders. The Minister for Life Sciences, George Freeman MP, will deliver a keynote speech and a panel discussion will follow. Members of the panel include: Georgina Hall (Consultant Genetic Counsellor at Manchester Centre for Genomic Medicine), Rachel Jeffares (SWAN UK Parent Representative), Dr Nick Lench (Chief Executive Operating Officer at Congenica Limited and Chair of the Joint Committee on Genomics in Medicine), Nicola Perrin (Head of Policy at the Wellcome Trust), Dr Jo Whittaker (Scientific Developments Officer, UKGTN and Senior Fellow at the PHG Foundation). The panel will be chaired by Alastair Kent OBE (Director of Genetic Alliance UK).

The Patient Charter contains 15 recommendations for consideration before genome sequencing becomes widely incorporated into NHS services. Recommendations are grouped under four broad themes, based on what patients told us was important to them.

  1. Patients want the option to receive as much information about their health as possible from genome sequencing.
  2. Patients value genetic counselling and are keen for the support of genetic counsellors before and after genome sequencing.
  3. Patients welcome the sharing of their genomic data for research purposes.
  4. Patients think that the NHS needs to make more progress towards preparing for the integration of genome sequencing into clinical practice.

Download our charter now! The press release can be found here.

We are grateful to the British In Vitro Diagnostics Association, the Medical Research Council and the Wellcome Trust for funding this work.

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