Data Use
HPRC sets out ethical considerations for responsible pangenome data use.
NHGRI explains testing, potential consequences and limits of genetic-discrimination protection.
Results and legal protections are not comprehensive.
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.
Covers biospecimen custodianship, consent, privacy, access and legacy planning.
Examines consent, transparency and retirement of AI simulations of deceased people.