Confidentiality of genetic information in Clinical Genetics
Research type
Research Study
Full title
To examine patients and health care practitioners (HCPs) experiences of sharing genetic information within an NHS clinical genetic service.
IRAS ID
273512
Contact name
Melanie Pottle Iddon
Contact email
Sponsor organisation
University of Bristol Research and Enterprise Development
Duration of Study in the UK
0 years, 10 months, 0 days
Research summary
Background: Genetic medicine is increasingly used in the NHS to improve the diagnosis and treatment of cancers and other inherited conditions. Genetic tests provide healthcare professionals (HCPs) with information about their patients but tests can also identify relatives who may be at risk of developing an inherited illness. HCPs cannot lawfully share their patient’s confidential medical information without their patients consent. However conventional models of doctor patient confidentiality may not help HCPs who feel they have a responsibility towards their patients but also concern for the at risk relative who may benefit from receiving this information.
Project aims: This qualitative study aims to help us to understand how patients feel about sharing their genetic information and whether it belongs to them or their family or both. The study will undertake clinical observations and interviews with HCPs and patients to help us understand the challenges HCPs and patients face when deciding whether to share their genetic information with family members.
Anticipated impacts: The correct management of patient information protects patients and HCPs ethically and legally. However genetic information has the potential to benefit many people. The study aims to help us to understand how HCPs can manage genetic information in a way that ensures a patient’s confidentiality is protected and genetic information is used appropriately and with consent.REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
20/NE/0267
Date of REC Opinion
5 Jan 2021
REC opinion
Further Information Favourable Opinion