Supporting BRCA carriers through risk reducing decision making v1.0
Research type
Research Study
Full title
A study using narrative analysis to examine what role, if any, others, excluding health professionals, have played in the risk reducing decisions of BRCA1/2 carriers who have previously attended the carrier clinic of the Royal Surrey County Hospital
IRAS ID
226780
Contact name
Mark S Wherry
Contact email
Sponsor organisation
University of Surrey
Clinicaltrials.gov Identifier
220563, IRAS project ID
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Two common genes that increase the risk of developing breast and or ovarian cancer are the BRCA 1 and BRCA 2 gene mutations. The National Institute for Clinical and Care Excellence (NICE) in their guidance to the NHS suggest that carriers of either gene mutation are at high risk of future disease and suggest certain preventative options should be available. These range from increased surveillance through MRI and ultrasound scans, to therapeutic drug interventions, to preventative surgery to remove breast tissue or ovaries. Research supports the risk reducing effects of surgery but as a proportion of carriers may never develop disease NICE does not prescribe a best option. With no objective best intervention the subjective view of the carrier during and after their choice making has been widely studied in terms of decisional conflict, satisfaction and regret. National Health Service (NHS) guidance promotes the value of supportive partners, friends and family in this choice making yet little research has addressed the role of the support person and their influence on the carrier along their journey from genetic testing to their risk reducing intervention decisions. This study seeks to address the research question: Excluding health professionals, what role do others play in the decisions BRCA1/2 carriers make about their risk reducing options? Using a qualitative design this study seeks to conduct semi structured interviews with adults identified by previous patients of the Royal Surrey County Hospital carrier clinic as their support person. The South West Thames Genetics Service and the carrier clinic at the hospital believe greater understand of the support persons role will improve their service. In addition, themes emerging from this study would inform the design of a later prospective study of new service users and their support person entering the carrier clinic.
REC name
London - Chelsea Research Ethics Committee
REC reference
17/LO/0787
Date of REC Opinion
24 Jul 2017
REC opinion
Further Information Favourable Opinion