Sharing your genome in the NHS: a study of public opinion
Research type
Research Study
Full title
Sharing your genome in the NHS: a deliberative study of public opinion on data sharing within genomic medicine services
IRAS ID
244393
Contact name
Mary Tully
Contact email
Sponsor organisation
The University of Manchester
Clinicaltrials.gov Identifier
26743, DMPonline Data Management Plan
Duration of Study in the UK
0 years, 6 months, 14 days
Research summary
In 2003, scientists first identified the complete genetic code of an individual, known as the genome. This breakthrough led to a rapid advances in ‘reading’ an individual’s genome, opening up the field of genomic medicine. The NHS is now making genomic medicine as part of routine care, for example to allow genomic information to identify a person’s risk of developing certain diseases, to diagnose disease, and to decide on the best treatments.
As part of ongoing improvements, the NHS will shortly be reorganising its services to create seven new Genomic Medicine Services (GMS) across England. It is highly likely that one of these will cover the North East, Cumbria, Yorkshire and the Humber as a single service. We want to get people’s opinions on the different ways that the new genomic medicine service might use patient data as part of the care for individuals, during single instances of care and over the course of their lifetime. We want to understand what people would reasonably expect to happen and what they would like to be told about how data about them is used, now and in the future.
To do this, we plan to run a series of six ‘deliberative’ focus group events with different groups of patients and wider members of the public from the region. Each event will last one day and will include talks from an expert in genomic medicine and broader group discussions to explore people’s opinions and experiences. Hypothetical scenarios about how data could be used in future will be used to prompt discussions. The outcomes of this day will then be analysed qualitatively and used to help the new GMS decide what it should and should not do with patient data as part of the new service.REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
18/NW/0510
Date of REC Opinion
26 Jul 2018
REC opinion
Favourable Opinion