Patient experiences of genetic and genomic research
Research type
Research Study
Full title
Patient experiences of genetic and genomic research: A qualitative study of participation in the Lothian Bowel Symptoms Study
IRAS ID
262372
Contact name
Sarah Cunningham-Burley
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
1 years, 1 months, 1 days
Research summary
Medical detection and treatment of cancer is improving as we learn more about its genetic causes. This has led to the development of new treatments and tests to screen for cancer. Our wider five year research programme explores what these developments mean for people with cancer. We are interviewing patients, their families, scientists, healthcare professionals and the public. We’ll also observe the work being done at cancer research centres and clinics. We want to see how these new developments influence people’s experiences of cancer, and their hopes and concerns for the future. We hope that this work will help change health policy for the better, and improve the care cancer patients get at all stages.
We have already secured ethical approval for a large amount of this work to be conducted across sites in Leeds and in Scotland (REC ref: 16/YH/0229). This current application relates to the addition of a new ‘case study’, where we will consider experiences of participating in research aimed at developing tools to screen for colorectal cancer. This part of our research will take place in Scotland only.
This case study will focus on the Lothian Bowel Symptoms Study (LABSS), research which aims to develop tools to better identify those at risk of significant bowel disease (REC ref: 17/SS/0087). Data for the LABSS research will be generated by looking at genetic information, family history and lifestyle factors from patients attending endoscopy for bowel symptoms. For our qualitative study we wish to observe the process of the collection of research data for LABSS, and the interactions between patients, accompanying persons and healthcare professionals. We also wish to observe laboratory settings and scientific analysis of LABSS samples, and to interview patients/accompanying persons/healthcare staff to explore their understandings and expectations for LABSS in more detail.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
19/SC/0301
Date of REC Opinion
30 May 2019
REC opinion
Favourable Opinion