World Privacy Forum Comments on Privacy Issues Relating to a Nationwide Genetic Research Project
- Big Data
- Blog Post
- Databases
- Fair Information Principles
- Future of Privacy
- Genetic Privacy
- Genome-wide Association Studies (GWAS)
- HIPAA
- Human Subject Research Protection
- Identity
- Modern privacy
- National Institutes of Health (NIH)
- Patient Privacy
- Privacy Act of 1974
- Privacy Gap
- SACGHS
- Sensitive Data issues
- U.S. Department of Health and Human Services
- Uncategorized
Genetic privacy — The collection of DNA material from 500,000 to 1,000,000 or more individuals as part of a large U.S. medical research project raises many challenging ethical, legal, and privacy issues. An advisory committee reporting to the Office of the Secretary of Health and Human Services ( the Secretary’s Advisory Committee on Genetics, Health and Society) has published a detailed analysis of the issues such a project and its associated databases and biobanks would raise in a draft report. The committee’s final report and policy recommendations will be submitted to the Secretary of HHS. The World Privacy Forum has submitted public comments on the draft; the comments include key policy recommendations.
The Forum’s recommendations include the need to provide protection from compelled disclosure of information, the necessity for a full-time project privacy officer with enforcement power, the need to address identifiability issues, and the need for a far-reaching and robust privacy policy that exceeds the requirements of HIPAA, among other recommendations.