"All medical records will be treated as if they are government property, not individual property."

Your employer and pharmacy, as well as drug marketers, your bank, and your insurance company, may soon be privy to explicit details of your past and present medical and mental health histories without your consent under regulations proposed by the Bush Administration.

The United States Department of Health and Human Services (HHS) is proposing to eliminate the requirement to get your consent to release your medical records. And consumers have only until April 26, 2002, to voice their objections.

"If this proposal becomes law, all medical records will be treated as if they are government property, not individual property," says Dr. Deborah Peel, president of the National Coalition of Mental Health Professionals and Consumers. And the scariest part is that you'll never know who requested your records or why — and there will be little you or your doctor can do to stop it.

The Bush administration first announced its proposed amendments to the privacy regulations of the federal Health Insurance Portability and Accountability Act (HIPAA) on March 27, 2002, and gave the public just 30 days to comment. According to HHS, the government wants to issue key health care players the "regulatory permission" to use and disclose all your personal medical and mental health treatment information in order to "facilitate" your treatment.

However, patient advocates fear that the government's definition of "key players" includes not only your doctor and your health plan, but also your employer, insurer, bank, and pharmacy, as well as drug marketers and medical data warehouses.

When the proposed amendments were unveiled, they were applauded by Karen Ignani, the president of the American Association of Health Plans, who said: "Health plans have long been committed to protecting the confidentiality of personal health information. We support a uniform federal standard that encourages patients to communicate openly and honestly with their physicians, while ensuring that health information vital to helping patients get the care they need at the right time continues to flow freely among key health care players."

"If this amendment is allowed, people will be able to have health care or privacy, but not both."

Peel sees it differently. "Even if you refuse consent to release your records or pay for your treatment out-of-pocket to ensure your privacy, the government can give regulatory permission for their release and you will never know who sees them or for what purpose," says Peel. "Stripped of privacy, every new medical symptom or test will become a potential bomb that could set off massive discrimination, job loss, or even bankruptcy if it signals an expensive, chronic, or stigmatized illness."

If this seems far-fetched, consider this: Select individual and small group health insurers already have access to medical information on more than 16 million people contained in files warehoused by the Medical Information Bureau (MIB). The MIB provides more than 600 insurers with medical information from databases that serve as a repository of information that insurers use to compare notes on applicants — and uncover those who've "lied" on their insurance applications — without having to contact one another directly. (Read What your health, life, and disability insurers know about you.)

Peel and other patient advocates are not exaggerating, according to James Pyles, a Washington, D.C., health care attorney who worked for six years in the Office of the General Counsel for the U.S. Department of Health, Education, and Welfare. "If this amendment is allowed, people will be able to have health care or privacy, but not both. As a citizen, lawyer, and sometimes patient, I'm afraid."

Under current law, you are still in control of your medical privacy. You have the right to give or withhold your written consent to disclose your private medical and mental health information. Under the proposed amendment, your doctor will still have the option of allowing you to give or withhold your consent, but ultimately you lose your power to control the information because it will be against federal regulation if your doctor refuses to hand over your records to any entity that has regulatory permission to request them.

Make your opinion known The deadline for voicing your opinion to HHS on the proposed amendments to HIPAA's privacy rule is 5 p.m. on April 26, 2002. You can submit your comments electronically at the HHS Web site. HHS must publish all comments it receives regarding these amendments. After the comment period is closed, HHS has no deadline to either adopt, reject, or rewrite the amendments. All health care entities affected by HIPAA must be in full compliance with established privacy guidelines no later than April 2003.

For example, under the proposed amendments, let's say your insurance company demands your medical records from an abortion or infertility clinic. Even if you have signed a form saying that you're withholding consent to disclose this medical information, your doctor will be breaking federal rules if he refuses to hand over your records.

And what about those "key health players"? Under the proposed rule, a key health player can be anyone who "recommends treatment," including drug marketers trying to get you to switch to their prescription medicine. This is particularly confusing to the elderly, says Peel, because "they'll get letters in the mail urging them to change their prescription medicines and they'll have no clue where they came from. They'll think the letters must have come from their doctors since they are the ones who know which medications they're taking."

In testimony before Congress, HHS argued that HIPAA's current consent process is "coercive." According to Twila Brase, president of the Citizens' Council on Health Care, a Minnesota nonprofit organization, "[HHS] said if [patient] consent was not given, [health] care or insurance could be withheld. The government has in essence decreed that patients have no ownership of their private information. They have no control, no say, no right to refuse disclosure."

Although HHS insists that the doctors will still have the "option" to allow you to give or withhold consent, the option will be at the discretion of your doctor, not you. And your doctor will be put in a very difficult position. Will it be in his or her best interest to serve you, the patient, or the insurance company that is cutting the checks? Let's say your doctor does refuse a regulatory request from your insurer for your records — there is nothing stopping the insurer from claiming that it cannot properly conduct its health care operations without your records and dropping your doctor from its network of providers for failing to comply with federal regulations.

Since your doctor won't be able to protect you from disclosure against your will, patient advocates say you will have to start making terrible choices when you're ill. "Who will have blood tests if employers can learn of a sexually transmitted disease?" asks Peel. "Who will get genetic testing if the results are used to deny applications for life or health insurance policies? These scenarios sound impossible, but they aren't."

Related information: Get an instant health insurance quote! The HIPAA law More health insurance stories