Genetic testing challengesdoctor-patient confidentiality

/ Source: The Associated Press

After one of Dr. Kenneth Offit’s patients died from a genetic form of breast cancer, Offit felt obliged to warn the woman’s college-age daughter that she, too, might be at risk.

He could not find the young woman. But he located her elderly grandmother, who also had had breast cancer. The old woman did not even to want to discuss issue.

“She responded, ‘Enough of this talk about cancer. I don’t want my family to hear any more of it,”’ Offit said. He did not pursue the issue any further.

Normally, under medical ethics, doctors are obligated to keep patients’ health information confidential — a duty central to the doctor-patient relationship.

But Offit’s dilemma illustrates how advances in genetic testing are placing strains on the principle of doctor-patient confidentiality. Doctors are grappling with whether to tell a patient’s relatives when the patient has an inherited disease or mutation that could afflict other members of the family.

In an article in Wednesday’s Journal of the American Medical Association, doctors and legal experts argued against imposing a mandatory “duty to warn” nonpatients. Among those supporting medical ethics as currently written was Offit.

“The cornerstone of the patient-physician relationship is the assurance of confidentiality,” wrote Offit, the article’s lead author and a researcher at Memorial Sloan-Kettering Cancer Center in New York City.

Requiring doctors to disclose such information would undermine the doctor-patient relationship and might violate recent federal privacy laws, the article said.

Also, it would be impractical to expect doctors to try to reach “an untold number of their patients’ relatives who might be at some unspecified risk from genetic predispositions,” the article said.

Even if all relatives could be reached, “each would require counseling and education that would impose completely unrealistic burdens on the physician,” Offit and colleagues argued.

Yet, a failure to warn family members about genetic risks has resulted in several lawsuits, including one case in Minnesota involving two children born with inherited mental retardation.

The debate could ultimately affect all patients as scientists discover that people’s genetic makeup could help determine such fundamental things as how well they respond to certain medicines, said University of Minnesota ethicist Jeffrey Kahn.

Amalia Rigoni, who underwent genetic testing after she was diagnosed with breast cancer four years ago, said it should be up to the patient whether or not to warn others.

Rigoni, a Chicago-area hot line counselor for the Y-ME National Breast Cancer Organization, said she told her female relatives that she was getting tested. But she said she would have had a problem if her doctor had taken it upon himself to do so.

“I firmly believe in the confidentiality of the patient and the doctor,” said Rigoni, 46, whose test results showed she did not have the breast cancer gene.

In the Minnesota case, Kimberly Molloy, a Minneapolis-area woman, said she would not have conceived another child if she had known the first had inherited mental retardation — a condition known as fragile X syndrome. She claims doctors were negligent in not testing her first child and in informing her the child’s condition was not genetic.

The Minnesota Supreme Court in May allowed that lawsuit to proceed in a ruling that some say broadens the definition of who is considered the patient in cases involving genetic diseases.

The ruling is a dangerous precedent that “is going to unnecessarily expand the liability of doctors in today’s world. It’s going to open up a Pandora’s box that may need to be remedied legislatively,” said attorney Katherine McBride, who represents one of the Minneapolis doctors being sued.

The JAMA writers said doctors should follow guidelines from medical groups including the AMA, which last year adopted a policy that says doctors should explain to patients the implications genetic testing might have for their relatives.

In some cases, doctors should explain that patients should disclose test results to potentially affected relatives, and doctors should offer to take part in that process, the AMA policy says. It implies doctors should not insist on disclosing such information, nor should they feel coerced to do so.

Without confidentiality, patients might not seek medical care, said Dr. Robert Sade, a member of the AMA’s Council on Ethical and Judicial Affairs.

“The frightening aspect ... is that physicians can be sued whether they do or they don’t” inform relatives, Sade said. “They’re really between a rock and a hard place.”