Data Use
HPRC sets out ethical considerations for responsible pangenome data use.
Demonstrates re-identification using genetic genealogy and other information.
Removing names does not ensure genomic privacy.
Genomic data can reveal information about relatives as well as the donor. A life archive may contain other people's words and images. Consent must address access, reuse, withdrawal, inheritance and any future simulation. Anonymization should never be treated as a complete genomic privacy solution.
HPRC sets out ethical considerations for responsible pangenome data use.
NHGRI explains testing, potential consequences and limits of genetic-discrimination protection.
Covers biospecimen custodianship, consent, privacy, access and legacy planning.