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Patient Study Highlights Perspectives, Understanding of 'Immortal' Nature of Genomic Data

For a paper appearing in European Journal of Human Genetics, a team from the University of Oxford and the University of Southampton present findings from a qualitative study that used postal surveys and semi-structured interviews to understand UK patients' perspectives on, and understanding of, genomic data. As part of an "Ethical Preparedness in Genomic Medicine" programme that encompasses two distinct research projects, the investigators brought together responses for nine individuals being offered genomic or genetic tests for cancer or a rare disease, along with 10 related individuals and three partners of those being tested. With this qualitative data, they explored participants' understanding of disease and trait heritability, as well as their perspectives on genome testing as an "immortal" data type and its potential impact on family members across generations. "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," the authors argue, suggesting that "[t]his immortality raises new ethical challenges for healthcare professionals, patients, and families alike."