ACLU Tells Bush Administration that Medical Privacy Proposal Needs Fix to Protect Patient Control

April 26, 2002 12:00 am

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WASHINGTON – Saying that President Bush’s proposed changes to the medical privacy regulation greatly weaken a promising step forward in protecting medical records privacy, the American Civil Liberties Union today urged the Administration to adopt significant fixes to the regulation to protect patient control over sensitive medical information.

“By eliminating consent requirements for certain health care functions, the Bush Administration is taking power away from the patient,” said Katie Corrigan, an Legislative Counsel. “Patients – not the health care industry or the government – should have the ultimate control over what medical information is shared with doctors, insurance providers and marketing companies.”

The ACLU expressed its concerns in formal comments on the regulation submitted today to the Department of Health and Human Services. At a Senate hearing last week, the ACLU urged Congress to act quickly to protect privacy in the face of the Administration’s proposed rollback.

Of particular concern are two proposed changes that would limit patients’ control over their information. The first would remove the requirement that patients give their consent before their highly sensitive personal medical records are used or disclosed for the purposes of treatment, payment, and health care operations. The proposed changes simply require a doctor to notify a patient that their records will be disclosed for these purposes.

The second involves the disclosure of medical records for marketing purposes, a practice against which the Administration claimed to have actually bolstered the regulations. In reality, the ACLU said, the proposed changes redefine the term “marketing” narrowly, allowing use and disclosure of personal medical information, without patient consent or an opportunity to opt-out, for the purposes of marketing health care products or pharmaceuticals related to treatment and other health care functions.

In addition, the comments urged the Department to reject the proposed changes to the provision dealing with minors’ health information in favor of the current regulation. According to the ACLU, the current regulation carefully balances teenagers’ need for confidential health care with parents’ general need to be informed.

“Teenagers should have the right to maintain the privacy of health records about sensitive services — such as mental health care, substance abuse treatment, and testing and treatment for sexually transmitted diseases — to which they legally consent on their own,” said Catherine Weiss, Director of the ACLU Reproductive Freedom Project. “Instead, the Bush Administration proposes to allow state governments, health insurance plans, and health care providers to decide whether to disclose such sensitive information to parents.”

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