Who’s Looking at Your Medical Records?

Published April 1, 2001

Did you know that the federal government is making new rules about who can look at your personal medical records? These rules will make it easier for a wide range of individuals and groups to see your medical information . . . without your knowledge.

To fulfill one requirement of the Health Insurance Portability and Accountability Act of 1996, enacted August 21, 1996, the U.S. Department of Health and Human Services published “Standards for Privacy of Individually Identifiable Health Information” in the Federal Register, Vol. 65, No. 250, pages 82461-82829, on December 28, 2000. These 368 pages run about 1,000 words per page, totaling over 350,000 mind-numbing words.

The new privacy regulations will apply to all individuals, whether their health care is paid for privately or by the government. Before these proposed medical privacy regulations become law, Americans should be asking some important questions:

  • Will you decide who has access to your medical records, or will a government agency make that decision? Under the proposed regulations, the government will decide, not you.
  • Who can inspect your electronic medical records—including genetic information—without getting your OK? Under the proposed regulations, any government agent claiming a “national priority purpose” can poke around in your most private medical details. In many cases, the government can release your personal medical information from government files, without having to ask for your permission.
  • Will you have the right to be provided with information about a medical condition that might be contained in your child’s medical records? No.
  • Can you be refused medical treatment if you don’t permit your doctor to release your medical records? Yes.

The proposed regulations do allow patients to complain about how their medical records are being handled . . . but the rules do not require the government to investigate your complaint. If the authorities choose not to investigate, the lawbreakers go free.

Adding injury to insult, the new privacy rules do not permit you to act on your own behalf to take these criminals to court: all power to sue or prosecute violations of the rules is reserved to the government itself. If the government agency does choose to pursue a privacy violation, the government will keep any fines or penalties collected for the breach of your personal privacy.

It’s Your Privacy

As physicians, we know many patients request that certain parts of their medical history not be formally recorded. One friend recently asked his own doctor to keep his records private. He asked the doctor if she would have any difficulty lying to the government. When she seemed reluctant, he insisted, asking, “Why not? They lie to us all the time.”

There is not a person among us who does not have some health issues he or she would rather not share with the entire world. Mental illness, disability, cerebral palsy, retardation, herpes, and genetic disorders are just a few among many conditions we might choose to keep private.

Government officials already have access to your credit records and your files at the IRS and FBI. Do you want to lose control of your medical history, psychiatric profile, lab studies, diagnostic tests like CT or MRI, and unique DNA structure?

Any measure claiming to protect the privacy of personal medical information must, at a bare minimum, include the following key provisions:

  • The measure must aggressively enforce, not eliminate, your right to consent before your personal medical information can be released.
  • The measure must not require you to accept a “unique health identifier” ID number for tagging and tracking your medical records electronically.
  • The measure must provide that if anyone, including a government official, abuses your privacy, you as an individual have the right to sue the privacy violator. You, not some government agency acting on “your behalf,” should be compensated for any damages that result from the invasion of your privacy.

Michael Arnold Glueck, M.D., of Newport Beach, California, writes extensively on medical, legal, disability, and mental health reform issues. Robert J. Cihak, M.D., of Aberdeen, Washington, is president of the Association of American Physicians and Surgeons.