A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England

• Published in: Public understanding of science (Bristol, England) England), 2020-10, Vol.29 (7), p.702-717
• Main Authors: Hassan, Lamiece, Dalton, Ann, Hammond, Carrie, Tully, Mary Patricia
• Format: Article
• Language: English
• Subjects: Attitude; Confidentiality; Data; Data retrieval; Deoxyribonucleic acid; DNA; DNA sequencing; Genetics; Genomes; Genomic Medicine; Genomics; Humans; Information flow; Medicine; Patients; Public opinion; State Medicine
• ISSN: 0963-6625; 1361-6609
• DOI: 10.1177/0963662520942132

Whole genome (DNA) sequencing is becoming part of routine care healthcare in England. Genomic data are most useful when pooled with other patients’ data, meaning that clinicians may need to share data to effectively treat patients. We ran deliberative focus groups to explore views among 44 patients and members of the public about proposals for wider genomic data sharing for clinical care. Participants were briefed about genomic medicine and engaged in group and individual exercises to deliberate on the benefits and risks of using genomic data. Findings showed that participants supported wider sharing of genomic data within health services and naturally linked care and research activities. Nonetheless, they were concerned about managing flows of information to protect patient confidentiality and guard against unauthorised uses, now and over the long-term. Ongoing conversations with the public are needed to determine appropriate uses of genomic data and safeguards to inform service development.