Privacy advocates testified before the House Judiciary Constitution Subcommittee last month that removing patient consent from the final federal privacy rule makes genetic information vulnerable to misuse by insurers and employers.

The final privacy rule, which becomes effective October 15, does not require covered entities—defined as health care providers including treatment facilities and health care professionals, health plans, and health care clearinghouses—to obtain patient consent before releasing patients’ private health information for treatment, payment, and administrative purposes (Psychiatric News, September 6).

Covered entities, with the exception of certain small health plans, have until next April to comply with the final rule. The exempted health plans have until April 2004 to comply.

Deborah Peel, M.D., testified on behalf of the American Psychoanalytic Association and the Mental HealthCARE Foundation before the House subcommittee that health care entities now have "regulatory permission" to release patients’ medical records containing genetic information "regardless of whether patients object to the release or pay privately for medical care."

"The sale, use, sharing, or redisclosure of individual genetic test results should not be permitted unless patient consent is obtained. Individuals should be able to choose to have genetic testing without fear of subsequent disclosure to third parties," Peel testified.

Unlike psychotherapy notes, genetic information is not entitled to a higher level of protection under the final privacy rule. A patient’s authorization does not have to be obtained before genetic information can be released to parties entitled to access under the privacy rule, and genetic information can be kept in the patient’s medical record, according to Peel.

Because health care professionals, plans, and clearinghouses are not required to keep a record of disclosures of private health information to business associates or other third parties, "patients can’t determine whether their employers or insurers used their genetic information to discriminate against them," said Peel.

She urged members of Congress to oppose the removal of patient consent in general from the final privacy rule and vote against the change. Congress had a deadline of 60 days from the date the final rule was published in the Federal Register on August 14 to approve changes. At press time, no action had been taken.

Peel is president of the Mental HealthCARE Foundation in Austin, Tex., an organization representing mental health professionals, patients, and their families whose mission is to educate the public about mental illness and treatment. She is also co-chair of the Committee on Government Relations and Insurance for the American Psychoanalytic Association. At APA, she is chair of the Assembly Allied Organization Liaison Committee and the liaison from the American Psychoanalytic Association to the APA Assembly.

Peel’s testimony is posted on the House Judiciary Committee Web page at www.house.gov/judiciary/peel091202.htm. ▪