Citing Wholesale Privacy Violations, Advocates Reject Revised Bill on Patient Privacy

Affiliate: ACLU of Maine
March 23, 1999 12:00 am

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Tuesday, March 23, 1999

PORTLAND, ME — As strong advocates for patient privacy, we appreciate the time that the Maine Legislature has dedicated to the issue of confidentiality of medical information during the last two years. Therefore, it is with great regret that we recommend that the amendments to the proposed legislation be rejected and that the 1998 confidentiality legislation be repealed.

Our analysis reveals that the proposed changes to the law severely diminish, rather than protect, the individual’s right to control medical information. We also have serious concerns that, to date, the discussions about confidentiality have been dominated and driven by the lobbyists of the health care industry, without the input necessary from patient advocates to provide a balanced view.

These health industry lobbyists have been working to assure that their easy access to medical information is not hampered by the “inconvenience” of getting patient consent or by legislation that allows patients to impose penalties if and when unauthorized disclosures occur. At the same time, health care consumers have been fighting just to maintain or gain coverage of the most basic necessities of health care services.

Medical records potentially reveal information that may render the patient vulnerable to humiliation, discrimination, economic hardship from loss of a job or insurance coverage, and even emotional and physical harm. Yet most people today maintain an expectation of privacy regarding their personal medical information that has little to do with reality. They would be shocked to learn that what they tell their physicians and insurers may not be protected.

A recent legislative survey of privacy laws conducted for the Centers for Disease Control, for example, found that only four states have specific legislation requiring insurers to maintain the confidentiality of medical records, despite the vast amount of information held by insurance companies.

The report recommends that “an independent data protection commission at the federal or state level should be established to carefully review privacy and security protocols and practices.” To assure accountability and ongoing discussion of privacy, the report suggests, “the commission should make public its decisions and reasoning.”

Similarly, we urge the legislature to develop an informed consumer voice and advocate so that when these issues are debated, the discussion is not monopolized and manipulated by those with a financial interest in gaining access to a patient’s health care information.

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