United States Has ‘Major Gaps’ in Policies to Protect Privacy of Genetic Information, CHCF Study Finds

The United States lacks "nationwide safeguards of workers' genetic information," and individuals "cannot be assured their genetic information will be kept confidential," according to a new study commissioned by the California HealthCare Foundation. The study, conducted by the Georgetown University Health Privacy Project, found five "major gaps" in national policy that "leave genetic information exposed to potential misuse":

The United States has no federal protections for genetic "source materials," such as tissue and blood.
Medical privacy provisions in the Health Insurance Portability and Accountability Act do not cover a number of "key entities" that could obtain and use genetic information.
Some HIPAA medical privacy provisions "are too permissive, including health-related marketing using protected health information and access to protected health information by law enforcement officials."
The United States has no private "right of action" that allows individuals to redress violations of genetic privacy.
Web-based genetic information "is vulnerable."

"While the U.S. has invested millions of dollars to promote genetic research, including the sequencing of the human genome, the federal government has yet to develop a clear policy about the collection, use, storage and protection of genetic information," CHCF Chief Information Officer Sam Karp said, adding, "The result is a patchwork of protections that leaves individuals and families vulnerable." The study, titled "Genetics and Privacy: A Patchwork of Protections," is available online. This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.