Public Comments

WPF comments on proposed changes to HIPAA

Health privacy and HIPAA — The World Privacy Forum filed comments with the US Department of Health and Human Services today in response to its Request for Information about possible changes to the HIPAA health privacy rule. WPF strongly supported patients’ current right to request a history of disclosures of their medical files, and requested an expansion of this right. WPF noted in its comments to HHS that “An individual cannot fully protect his/her privacy interest in a health record (and most other records) unless he/she has a right of access to the record, the right to propose a correction, and the right to see who has used the record and to whom it has been disclosed. Each of these elements is essential.”

Public Comments: January 2010 – WPF files comments with Department of Labor regarding genetic regulations

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.

Public Comments: December 2009 – Genetic Information Nondiscrimination Act of 2008, GINA NPRM

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.

World Privacy Forum comments on genetic non-discrimination to HHS

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.

Testimony: The Modern Permanent Record and Consumer Impacts from the Offline and Online Collection of Consumer Information

I am particularly interested in developments related to online and offline data flows of consumer information. Given the advances in technology that have significantly broadened and deepened the scope of consumer data collection practices, and given the new ways that these technologies and practices can shape and impact an individual’s experiences and opportunities, I believe the decisions that this Committee arrives at will be of lasting importance. Given the transition our society is undergoing from analog to digital, it is crucial to question what changes the new environment brings, what new controls it includes, and its meaning for our day-to-day lives. It is especially crucial to carefully examine and to discuss the effects these developments will have for the consumer. We must look for a fair balance between benefit, risk, and harm.