GuidanceConsent, privacy & ethics
Data Use
HPRC sets out ethical considerations for responsible pangenome data use.
2025
What this contributes
NIST's initial public draft of Privacy Framework 1.1 proposes updates.
The boundary of the evidence
This linked version is a draft.
Why it belongs here
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.
Keep reading
GuidanceConsent, privacy & ethics
Genetic Testing FAQ
NHGRI explains testing, potential consequences and limits of genetic-discrimination protection.
Resource
GuidanceConsent, privacy & ethics
Governance Best Practices - NCI
Covers biospecimen custodianship, consent, privacy, access and legacy planning.
2026