Family Forum / Parenting / Adoption / September 2004

Genetic testing challenges doctor-patient confidentiality:
Doctors, legal experts argue against imposing mandatory 'duty to warn'
nonpatients

The Associated Press
Updated: 5:08 p.m. ET Sept. 21, 2004

CHICAGO - 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.

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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.”

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