ACLU Endorses Medical Records Privacy Legislation

FOR IMMEDIATE RELEASE
Wednesday, March 10, 1999

WASHINGTON — Saying that it is a strong proposal that will accomplish much to protect the privacy of health care consumers, the American Civil Liberties Union endorsed medical records privacy legislation being introduced today in both the House and Senate.

Barry Steinhardt, Associate Director of the ACLU, called the legislation — being introduced today by Senators Patrick Leahy, D-VT, and Edward Kennedy, D-MA, and Representative Edward Markey, D-MA — an outstanding effort to protect the privacy of American’s medical records.

“Currently, the United States has no coherent and consistent medical privacy policy,” said Ronald Weich, an ACLU Legislative Consultant. “A patchwork of state laws protects citizens in some states, but a nationwide law like the one proposed today is needed in this era of electronic records and national insurance companies.”

The ACLU said the Leahy-Kennedy-Markey legislation offers the best approach to protecting medical records privacy. Specifically, the ACLU said the bills would:

• Require informed consent before a patient’s records are disclosed to third parties except under carefully outlined circumstances. The legislation seeks to protect public health and research without infringing on basic privacy values.

• Limit law enforcement access to medical records. The bill establishes the principle that medical records must not become a centralized law enforcement database without protective legal standards for access. Law enforcement officers would be able to obtain medical records only after persuading a judge that specific records were necessary for investigating a crime.

• Protect state laws that offer greater protection to health care patients. The Leahy-Kennedy-Markey bill would create a basic federal privacy protection, but not preempt states that take even stronger steps to protect privacy.

There are provisions of the proposed legislation, however, that the ACLU said it would seek to strengthen. For example, the ACLU said the bill should include restrictions on the use of health research information even if most personally identifiable information has been removed. In addition, the ACLU said it would seek a provision that would provide for after-the-fact notice in the rare cases when health information has been disclosed to third parties such as law enforcement without their notice or consent. Such a provision would allow patients to pursue appropriate legal remedies.

“Privacy is especially important in the health care context because the doctor-patient relationship is built on trust and confidentiality and because medical records include especially sensitive and intimate information,” Steinhardt said. “The disclosure of medical records may subject the patient to humiliation and discrimination, and may compromise the quality of medical care.”