Public Policy

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.

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 loophole in consumer protection in the 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 as to prevent information leakage through billing and other activities.

Data broker opt out issue — The World Privacy Forum sent a letter to the Federal Trade Commission asking it to look into four companies offering online consumers the ability to opt out, then asking those consumers to use a variety of postal-mail-based methods to do so.

This is an annotated timeline documenting the activities of the National Health Information Network. Related documents, when available, are linked. Additional source documents follow the timeline.

The National Health Information Network (NHIN) is an ambitious modernization plan proposed by the U.S. government. The idea is to move as an entire nation from paper medical files to electronic medical files that are shared. Specifically, the government goal is to digitize patients’ health records and medical files and create a national network to place the information in. The network, called the NHIN, would be a sophisticated network that hospitals, insurers, doctors, and others could potentially access. Such a network brings patient privacy, security, and confidentiality issues into sharp relief.