When the Bush administration accepted Clinton administration proposals for medical-records regulations--including a requirement for seeking patient consent for treatment, payment and "health operations"--some suggested that President Bush just might become known as the "privacy president."
But now, by removing that consent requirement, the administration's credibility is short-circuited, and Bush has severely undercut medical confidentiality.
Confidentiality has been fundamental to medicine since the Hippocratic oath. It's a long-standing ethical norm that patients have the right to agree or not to agree to both treatment and how their medical information is used. Unless patients feel their information will be safeguarded, they will often not reveal their full symptoms. A California Health Foundation survey found that one in six patients already tried to hide some health concerns from providers.
The substitution of giving notice that personal patient health information, both physical and psychological, has been disclosed--rather than obtaining patients' consent to do so first--imposes a burden on the provider, who must try to get patients to sign a form acknowledging that they don't have the most basic right to consent. There is also a burden on patients, who face the choice of acquiescing to having no right of consent, trying to negotiate for that right or refusing treatment.
"Instead of asking if they can come into your house, they are going to come into your house and give you notice about it," privacy expert Sue Blevins said.
The familiar occasion of doctor's office visits may take on a very different character when providers have to ask patients to accept that their medical information may be disclosed without their approval. Patients will become even warier of sharing symptoms that could be revealed to insurance companies or employers, risking loss of coverage or weakening job promotion prospects. Lacking complete medical histories, providers will have to practice more defensive medicine by requiring additional, expensive tests. The costs to doctor-patient trust and the health of the medical-care system will increase. Moreover, even if the Clinton consent requirement remained, the regulations still would have serious, if fixable, flaws. Consent is often forced because medical providers can refuse to give care if patients do not agree to disclose their medical records. The regulations also provide access without consent or court order to medical records for "national priority purposes," particularly purposes of the police and national security agencies. In this "docs to cops" provision, what patients say in private to a physician to get better care could end up getting them in trouble with the law. For instance, a patient whose records included information provided in confidence to a doctor to get into a drug treatment program could end up in trouble with the law for drug use.
Abolishing consent now is not a minor modification. It deserves a full regulatory review.
Moreover, this abolition affects the core of what it means to have consent of the governed and due process in a nation founded on these principles. People have a right to say yes or no to the use of such personal details as their medical histories. Absent consent, use of medical records becomes a government prerogative that is foreign to a free society.
The Bush administration should return to its commitment to protect medical privacy by putting consent back into the regulations. It should fix the flaw by creating truly informed consent and restricting wider disclosure.
The health of Americans and the body politic is at risk. Consent for the use of medical records is basic to doctor-patient confidentiality and the health of the nation.
A consent requirement should be the foundation of any set of regulations whose purpose must be to reinforce--not undermine--a right so fundamental as medical privacy.