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Latest Surrogacy News
When a Doctor Stumbles on a
Family Secret
By BARRON H. LERNER, M.D.
September 16, 2003
New
York Times
A group of health
professionals were evaluating potential donors for a kidney
transplant recently when they received a surprise. Through
routine genetic testing, the group inadvertently learned
that one of the adult children was not the child of the man
with kidney failure.
The transplant team
struggled with the question of what to do with this
information. Should the family be told? To whom did the
knowledge belong? Was it ethical to use the child's kidney
without telling him?
Keeping family secrets used
to be a routine part of medicine. But over the past few
decades, as patient autonomy and informed consent have come
to dominate clinical practice, disclosure has become more
commonplace. Every now and then, however, physicians
confront complicated family secrets. What they should do
about them is far from clear.
Much of the earlier secrecy
stemmed from the Hippocratic Oath, the code that stresses
doctor-patient confidentiality.
This principle led
generations of doctors to keep their mouths shut. For
example, psychiatrists preserved the confidences of patients
who threatened potentially violent actions against family or
friends. Similarly, physicians concealed venereal diseases,
even when patients' spouses were at risk of infection.
But in the 1970's and 80's,
as American society increasingly questioned the authority of
doctors and promoted individual rights, things changed.
Thus, in the 1976 Tarasoff case, a court in California ruled
that a psychiatrist should have disclosed his patient's
homicidal thoughts to the man's girlfriend. The woman, never
warned, had been killed by the patient.
And as AIDS spread, states
passed laws to require notification of partners, something
previously recommended only for venereal diseases.
Doctor-patient confidentiality was no longer absolute if
others were at risk.
But as the case of the
kidney transplant shows, the boundaries of such disclosures
are not always clear. Incidental information obtained about
false paternity during transplant screening, warns Dr.
Francis L. Delmonico, a professor of surgery at the Harvard,
can be "a disaster for a family."
If a test is conducted in
connection with a possible transplant, Dr. Delmonico says, a
good case can be made for concealment. Indeed, that is what
occurred in the recent case: the patient did receive a
kidney from his non-biological son.
Linda Wright, an ethicist
at the University of Toronto, pointed out the potential
advantages of such secrecy in the journal Seminars in
Dialysis, noting that disclosure could stigmatize the child,
direct anger at the mother or compel the child to withdraw
as a kidney donor.
Yet when a transplant team
in Toronto recently confronted its own case of false
paternity, it chose to disclose the information — gradually
and carefully — to the potential donor and her family. Ms.
Wright listed several justifications for doing that: the
duty to be truthful, respect for autonomy, the medical value
of telling children their true genetic heritage and the risk
of future disclosure.
In this case, things worked
out. Ms. Wright reported that although family members at
first responded with "shock and distress," there was
resolution. The patient's daughter was especially grateful,
announcing that she would have hated the medical personnel
had she found out the facts later.
An interesting parallel to
that situation occurs with assisted reproduction. Since the
first test-tube baby was born, in 1978, physicians have
helped produce hundreds of thousands of babies. Among the
strategies employed are using surrogates, women who carry
and bear the child for the future mother, and surrogate
eggs, which are implanted in the mother.
One might expect that
children born with the help of such technologies would
eventually be told of their parentage. After all, it has
become entirely routine for parents of adopted children to
divulge similar information. In addition, as Dr. Richard J.
Paulson, a fertility specialist at the University of
Southern California, says, the increasing ability of people
to obtain their genetic information raises the very real
possibility of future surprise disclosures.
Yet in the case of
surrogacy, Dr. Marcelle I. Cedars, a reproductive
endocrinologist at the University of California at San
Francisco, notes that children may never be told. Although
women requesting egg donations meet with psychologists, they
are given options, but not advised to disclose. Thus, when a
younger sister donates an egg, her niece may never learn
that she carries one-half of her aunt's genetic material.
The situation is different
from adoption, in which there is often no biological
connection or physical resemblance between parents and
child. In egg donations, children may share some genetic
material with one or both parents and are therefore less
likely to perceive differences. Even if a donor is used,
mothers often carry the fetus and deliver the child.
Moreover, there is a long
history of anonymous sperm donation. In those cases, some
children never learn details about their biological fathers.
How should physicians and
other health professionals respond to family secrets?
There are some practical
strategies. In kidney transplants, for example, routine
testing in the recent case of the father and child for the
gene group, called human leukocyte antigen, may not be
necessary. Not ordering potentially troublesome tests can
therefore help ease some of the problems.
What about the larger
questions raised by concealment? Dr. Nancy K. Newman, a
family physician at the University of Minnesota, worries
about the perpetuation of "toxic secrets" that "involve the
erosion of trust in relationships within the family or
between family members and others."
Dr. Newman said she did not
believe that doctors should disclose all secrets.
"In the case of the kidney
transplant," she said, "I'm not sure if the doctors'
knowledge of the secret makes it any more toxic."
But she worries about
knee-jerk or reflexive decisions to keep quiet. Family
secrets, she argues, are an opportunity for physicians to
encourage better communication among patients and their
relatives.
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