With stories of insurance plans denying coverage for pre-existing medical conditions, it’s not surprising that some patients seeking care – even for life-threatening conditions –hesitate to have genetic information logged in their medical record for fear of being singled out by health plans or insurance companies down the road.

As the data trail on a person’s medical history becomes more and more permanent, the dilemma that an increasing number of patients face also brings up an important question for doctors: what should they do when patients ask to have genetic or other information excluded from their medical record?

In a Sept. 8, 2010 paper published by the Journal of the American Medical Association, Columbia University Medical Center’s Robert Klitzman, MD, describes how the proliferation of genetic information, advances in information technology and the portability of large amounts of data pose new challenges in health care.

Based on a series of patient interviews, Dr. Klitzman uncovered that some patients now ask physicians not to record genetic information in the medical chart. These requests have in some cases given rise to separate, parallel “shadow” charts where genetic information is kept separately from versions forwarded to insurers.

While the Health Insurance Portability and Accountability Act (HIPAA) protects medical information in certain contexts, and the 2008 Genetic Information Nondiscrimination Act (GINA) protects genetic test results in the absence of symptoms, these laws do not prevent discrimination in many realms of every day life such as disability or long-term care insurance, writes Dr. Klitzman, a professor of clinical psychiatry at the Columbia University College of Physicians and Surgeons and the Mailman School of Public Health.

“Many patients don’t understand how these laws work, and even when they do, they don’t believe that the laws’ provisions will protect them from subtle discrimination,” says Dr. Klitzman. As a consequence, exclusion of genetic information can be dangerous if patients are seen by other providers who do not know this information – such as in an emergency room.

Excluded information may also pose problems if patients are seen by other physicians who may overlook diagnoses and order additional, unnecessary tests to rule out more common but absent diseases. In addition, physicians may face legal and institutional consequences if insurers refuse to cover fees for patient care unless all information is provided.

To protect against the inadvertent release of genetic information, office staff must be counseled on the importance of honoring patients’ requests while making sure staff members realize just how easy it can be to negate them – often with the single click of a mouse, Dr. Klitzman adds.

In everyday practice, doctors can begin to ask their patients what their concerns are and then familiarize themselves with the law and the American Medical Association’s (AMA) Code of Ethics.

Careful sensitive implementation of GINA can reduce discrimination fears, but legislation is needed to cover other forms of insurance and increase fines if employers or health care insurers violate GINA. The AMA’s own code says that physicians may withhold genetic testing results from insurance companies if they inform insurance companies they are not including such information.

“Current guidelines, federal laws and the AMA code should be bolstered with more information on what doctors should do in various scenarios,” Dr. Klitzman says. “Suggesting merely that doctors tell insurance companies that genetic information has been excluded from the medical record might even send a ‘red flag’ to insurers that the patient has a genetic mutation that may result in a denied claim and or an untreated disease.”

For further reading, the paper, “Exclusion of Genetic Information from the Medical Record: Ethical and Medical Dilemmas” is available here.