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Type
Journal Article
Title

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

Authors:

Author Name(s)
Kate Lyle
Susie Weller
Rachel Horton
Anneke Lucassen

Year:

Date
2023
Journal Book Publisher Name
European Journal of Human Genetics

Description

Description

Lyle and colleagues analyze how patients and their relatives conceptualize the “immortality” of genomic data. They find that participants focus on the simplicity of providing a sample instead of the possible findings, consider the implications of their data for family members, and view genomic data as a collective resource that could benefit society.

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