Immortal data: a qualitative exploration of patients’ understandings of genomic data

This paper explores patients' understanding of genomic data's enduring nature. Unlike other medical data, genomic data are 'immortal,' unchanging and relevant to relatives across generations. This raises ethical challenges regarding consent, data reinterpretation, confidentiality, and the duty of care to relatives. Qualitative research with patients and relatives reveals their engagement with this 'immortality' is shaped by the contrast between simple sample provision and complex data, understandings of heredity, and the view of genomic data as a collective resource. The study argues that genomic data's immortality needs more prominence in patient-healthcare professional interactions.

Kate Lyle, Susie Weller, Rachel Horton, Anneke Lucassen