GuidanceConsent, privacy & ethics
Data Use
HPRC sets out ethical considerations for responsible pangenome data use.
2025
Research field / 10
Consent, privacy & ethics
A legacy belongs to someone.
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.
Questions that matter
- What did the donor authorize, and what remains outside that consent?
- How are family members and other people in the archive protected?
- What rights survive death, and how are disputes resolved?
Sources & resources
Read our evidence note, then follow the original source.
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
Ethics researchConsent, privacy & ethics
Griefbots, Deadbots, Postmortem Avatars: On Responsible Applications of Generative AI in the Digital Afterlife Industry
Examines consent, transparency and retirement of AI simulations of deceased people.
2024
Primary studyConsent, privacy & ethics
Identifying personal genomes by surname inference
Demonstrates re-identification using genetic genealogy and other information.
2013
FrameworkConsent, privacy & ethics
Privacy Framework
NIST's Privacy Framework structures privacy risk management.
Resource
Draft frameworkConsent, privacy & ethics
CSWP 40, NIST Privacy Framework 1.1
NIST's initial public draft of Privacy Framework 1.1 proposes updates.
2025
ProgramConsent, privacy & ethics
Data Security Work Stream – GA4GH
GA4GH develops security standards for genomic data exchange.
Resource