Please give me a copy of my child’s raw genomic data

In this work, we explore whether raw genetic data generated during sequencing ought to be returned to a pediatric patient and/or their parents/guardians. We identify the principles used by various professional societies in their guidelines on the return of secondary findings and apply them to this n...

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Bibliographic Details
Published in:Npj genomic medicine 2021-02, Vol.6 (1), p.15-15, Article 15
Main Authors: Chad, Lauren, Szego, Michael J.
Format: Article
Language:English
Subjects:
692/4017
692/700/1720
Bioethics
Bioinformatics
Biomedical and Life Sciences
Biomedicine
Children & youth
Comment
Consent
Decision making
Ethics
Families & family life
Gene Function
Gene Therapy
Genetics
Genomes
Genomics
Guardians
Hospitals
Human Genetics
Information sharing
Internal Medicine
Laboratories
Parents & parenting
Patients
Pediatrics
Personal health
Principles
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Summary:In this work, we explore whether raw genetic data generated during sequencing ought to be returned to a pediatric patient and/or their parents/guardians. We identify the principles used by various professional societies in their guidelines on the return of secondary findings and apply them to this new context. We conclude that since each situation is unique, decisions should be made on a case-by-case basis according to the best interests of the child.
ISSN:2056-7944
2056-7944
DOI:10.1038/s41525-021-00175-y