Immortal Data: A qualitative exploration of patients’ understandings of genomic data

Abstract As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, genomic data is becoming increasingly familiar to patients. Unlike the results of many other medical investigations which are linked to the time of sample collection, genomic testing provides immortal data that do not change across time, and may have relevance for relatives and generations far beyond the patient’s own lifespan. This immortality raises new ethical challenges for healthcare professionals, patients and families alike, such as ensuring consent for possible future interpretations; determining when data should be reinterpreted; balancing the confidentiality of patients and duties of care towards others. Given the range of ethical challenges it raises, it is essential that the immortality of genomic data is brought to the fore. This paper reports on a qualitative study exploring the perspectives of patients and relatives participating in genomic testing, and suggests that their engagements with this immortality are shaped by: the simplicity of sample provision; understandings of heritability; and notions of genomic data as a collective resource. We discuss the implications this holds for practice and argue that the immortality of genomic data must take a more prominent position in patient and health care professional interactions.