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

Medicine and Health

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

K. Lyle, S. Weller, et al.

This research by Kate Lyle, Susie Weller, Rachel Horton, and Anneke Lucassen delves into the unique nature of genomic data and its implications for patients and their families. The concept of genomic data being 'immortal' raises critical ethical considerations, which this study examines through qualitative research, emphasizing the need for better communication in healthcare settings.

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~3 min • Beginner • English
Abstract
As ambitions to ‘mainstream’ genetic and genomic medicine in the UK advance, patients are increasingly exposed to information about genomic data. 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 genomic data are best sought (at birth, on illness etc) and reinterpreted; and balancing the confidentiality of patients and duties of care towards others. This paper reports on qualitative work exploring the perspectives of patients and relatives participating in genomic testing, and suggests that their engagements with this immortality are shaped by: the contrast between the simplicity of sample provision and information gathered; understandings of heredity; 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 healthcare professional interactions.
Publisher
European Journal of Human Genetics
Published On
Mar 31, 2023
Authors
Kate Lyle, Susie Weller, Rachel Horton, Anneke Lucassen
Tags
genomic data
immortality
ethical challenges
patient understanding
consent
confidentiality
heredity
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