The World Privacy Forum commented on an important proposal to make changes to the existing rules regarding the confidentiality of alcohol and drug abuse patient records. The proposal is from the Substance Abuse and Mental Health Services Administration (SAMHSA), part of the US Department of Health and Human Services. These proposed rule changes are important, as the current
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.
The Nuremberg Code, an extraordinary document around ethics and research on human subjects written after the research abuses that took place during World War II, is akin to a global Emancipation Proclamation for human research subjects. The Nuremberg Code’s 10 principles remain a timeless rendering of thought on what should be in place prior to any entity conducting research on human subjects, and this code forms the philosophical foundation of a regulation in the US known as the Common Rule. We have written extensive comments on the US proposal that will update the Common Rule…
The World Privacy Forum filed comments today on the Office of Management and Budget’s proposed revision to a document that advises Federal agencies on how to handle the information they store. The document, OMB Circular A-130, Managing Information as a Strategic Resource, establishes policies for the management of federal information resources, including information the US holds
The World Privacy Forum filed comments with the Equal Employment Opportunity Commission about wellness programs and related privacy impacts to individuals. Many Americans now take part in employer wellness programs, and they are increasingly and justifiably concerned about the sensitive information these programs are gathering, sometimes in return for incentives such as discounts on pricing for health insurance. These comments to the EEOC address some of the most significant challenges individuals face, including voluntariness, fairness, due process, and information sharing outside of HIPAA.