Washington Editor

WASHINGTON - A physician who testified on Capitol Hill Thursday said a patient privacy regulation scheduled to go into effect Oct. 15 could damage doctor-patient relationships and discourage people from seeking medical help.

Deborah Peel, a physician and media consultant, told members of the House Judiciary Subcommittee on the Constitution that amendments to the privacy rule released in August would eliminate the right of each American to control the release of medical and genetic records.

The rules she referenced were added to the Health Insurance Portability and Accountability Act of 1996, known as HIPPA. Peel, who addressed the subcommittee on behalf of the American Psychoanalytic Association and the Mental HealthCARE Foundation, is concerned that under the relaxed consent rules, people will not seek medical treatment or genetic testing out of fear that their private health information will be disclosed to an employer or insurance company - or others - without their consent.

Instead of forcing health care providers to obtain patient consent before releasing medical records, the amendments say providers are expected to make a "good faith effort" to obtain a patient's written acknowledgment of the notice of privacy rights and privileges. According to a prepared statement released by the U.S. Department of Health and Human Services, the new rules promote access to care by removing mandatory consent requirements that would inhibit patient access to health care.

But that doesn't mean a researcher can gain access to medical records without getting permission.

Michael Werner, vice president for bioethics at the Washington-based Biotechnology Industry Organization, told BioWorld Today that the rules governing patient consent for research also apply to medical records. "You can use information for research purposes if you remove all the pieces that identify who we are talking about," he said. "It makes research easier without reducing privacy protections."

On another front, the rules do not specifically exclude genetic information from the records that can be disclosed, Peel said.

That point creates deep concern for Peel and Joanne Hustead, a professor at Georgetown University in Washington, who also testified that the HIPPA regulation is too broad and does not adequately protect patients.

Hustead and Peel urged lawmakers to take a proactive stance in protecting the citizenry from discrimination as science advances make it possible for a simple blood test to predict future illnesses.

In his opening statement, Ohio Republican Steve Chabot, chairman of the subcommittee, said 31 states currently have legislation outlawing genetic discrimination in the workplace. Most states prohibit employers from requiring genetic testing as a condition of employment unless the employer is conducting genetic monitoring. "However, existing state laws vary widely in coverage, with some of the earlier laws only protecting individuals with specific genetic characteristics or particular genetic disorders," he said.

Indeed, a federal law would pre-empt individual state law if it is stronger.

So far, Connie Morella (R-Md.) has introduced legislation that would prohibit genetic discrimination. The Genetic Nondiscrimination in Health Insurance and Employment Act (HR602) has 244 bipartisan co-sponsors and it prohibits health insurers from using genetic information to deny, cancel or change the terms of insurance coverage. It also prohibits use of genetic information by employers in hiring, firing and other employment-related decisions.