The World Privacy Forum has filed extensive comments on the proposed changes to how the Genetic Information Nondiscrimination Act will be interpreted. Our comments focus on how the proposal will impact wellness program privacy, as well as family and spousal privacy. In our comments, we discuss our concerns with a variety of aspects of wellness program privacy, including the fact that much data from wellness programs falls outside of HIPAA protections. We also have strongly urged the EEOC to not allow employers to purchase genetic information about employees from third parties without consent, among other items related to this issue.
Genetic privacy — The World Privacy Forum filed comments today with the Department of Labor requesting that the DOL expand its protections of how genetic information may be used by health insurance companies or group health plans. The World Privacy Forum urged the DOL to include genetic information posted on social networking sites in its consideration of the GINA regulations.
Genetic non-discrimination regulations (GINA) — The World Privacy Forum filed comments on proposed regulations for implementing Title I of GINA, the Genetic Non-Discrimination Act. The WPF requested a change to the proposed regulations, asking the Department of Health and Human Services require immediate posting of revised notices of privacy practices on the web sites of affected health plans. Under the proposed regulations, written notice of revised privacy practices to individuals could be delayed due to the cost of postal mailing. The WPF noted that a revised privacy notice posted on a health plan’s web site would not incur postal costs, and that regulated entities should take this minimum step to inform consumers of any changes regarding privacy practices affecting genetic non-discrimination.
Genetic Privacy | GINA — The World Privacy Forum filed comments on the proposed regulations on the Genetic Information NonDiscrimination Act, or GINA. The comments request that the Equal Opportunity Employment Commission close down several potential loopholes in consumer protection in the proposed regulations. The Forum specifically asked the EEOC to consider curtailing the amount of commercially available information employers could access about employees, for example, through marketing databases. WPF also requested that those covered under GINA be required to maintain audit trails in certain circumstances, and urged that wellness programs be structured in such a way so as to prevent information leakage through billing and other activities.
GINA – Genetic Information Nondiscrimination Act — In comments regarding the recently passed GINA (Genetic Information Nondiscrimination Act), the World Privacy Forum said that some aspects of GINA need clarification to enhance privacy. The comments focus on a number of privacy issues the RFI raised, including model privacy notices and the issue of what the GINA statute calls “incidental collection” of genetic information. Currently, GINA states that some kinds of information are exempted from being considered as regulated for medical underwriting purposes. For example, medical information gleaned about patients for underwriting purposes from medical databases is regulated. But medical information gleaned about patients for underwriting purposes from, for example, marketing lists containing robust patient information may be unregulated if the law is not clarified in the regulatory process. The World Privacy Forum urged HHS and the Department of Labor to substantially clarify what constitutes “incidental collection,” and urged the agencies to consider lists containing identifiable patient information to be considered in the same category as a “medical database.”