Genetic privacy — Executive director Pam Dixon presented key issues and potential solutions regarding privacy and Genome Wide Association Studies at the Institute of Medicine’s Board on Health Sciences Policy meeting. Her presentation included recommendations to engage in a comprehensive study of certificates of confidentiality, to encourage standards of identifiability, to encourage study of what more uniform standards of privacy and security for researchers might look like, and a recommendation to work toward broad solutions that extend beyond GWAS activities.
information will expand greatly in the future. In public comments filed with the National Institutes of Health on pharmacogenomics (PGx) research, or research using genetic information to create highly personalized medicine, the World Privacy Forum recommended that all research activities that involve any type of patient-specific genetic information be required to have certificates of confidentiality, whether that information appears identifiable or not. The WPF also urged the NIH to require strong data use agreements to protect individuals’ privacy. The WPF also urged NIH and the Department of Health and Human Services to reinstate the position of “privacy advocate” so as to provide oversight in this area.
REAL ID — REAL ID is a national ID card program. Currently, the Department of Homeland Security is accepting public comments on the REAL ID plan. Comments will be accepted until Tuesday, May 8. The World Privacy Forum has joined with a large coalition of groups to solicit public comments on REAL ID; to file comments, please visit the Speak Out Against REAL ID coalition page for more information. http://www.privacycoalition.org/stoprealid/
Genetic privacy | SACGHS — The World Privacy Forum gave testimony to the Secretary’s Advisory Committee on Genetics Health and Society regarding privacy issues stemming from direct-to-consumer advertising and consumer-initiated genetic testing. The World Privacy Forum noted that a great deal of consumer health data circulates outside the protections of HIPAA, and a substantial market for this kind of consumer health data already exists. Genetic data about consumers that is acquired outside the clinical context and is not subject to the protections of HIPAA (for example, through consumer-initiated genetic testing) will likely not be any more protected than other forms of consumers’ health-related information from the current demands of the market. However, the consequences of leakage of genetic information about consumers into the marketing stream could have potentially negative consequences for both those consumers and their blood relatives. The World Privacy Forum urged the committee to include specific recommendations about privacy in its upcoming report to the Secretary, and also urged the committee to work with other federal agencies to set up a pre-market oversight structure that includes significant and meaningful privacy protections for genetic testing occurring outside of the protections of HIPAA.
e-Government /CIPSEA — The World Privacy Forum submitted comments to the Office of Management and Budget regarding proposed guidance on Title V of the e-Government Act. The proposed guidance did not address the relationship between CIPSEA and the USA PATRIOT Act Section 215, and guidance regarding identifiability and the Privacy Act of 1974 needs to be further refined. WPF suggests that OMB consider developing a formal statistical confidentiality seal controlled by a federal agency. The purpose would be to provide an identifiable marker that would tell individuals if the information they provide will receive the highest degree of confidentiality protection available under law.