Misattributed Paternity: What Should be Done when Testing for a Liver Donor
Discloses an Incidental Finding that the Father who Volunteers to Donate a Lobe
of his Liver for his Son is NOT the Child’s Biological Father?
Kenneth Prager, MD, Chair
Columbia University Medical Center Ethics Committee
November 30, 2010
12:00 Noon – 1:30 pm
On November 30, 2010, at the Gold Foundation Ethics for Lunch Seminar Series, Dr.
Kenneth Prager presented a very challenging case from the Columbia University
Medical Center Ethics Committee.
INTRODUCTION:
Dr. Ruth Fischbach, director of the Center for Bioethics, welcomed a large audience to
the first Ethics for Lunch event of the academic year, 2010-2011. Ethics for Lunch has
been very successful with increasing numbers of attendees at each event, a fact both
rewarding to the Center for Bioethics and evidence of the great interest people have in
how compassionate, humanistic medical care is practiced.
The Ethics for Lunch series is designed to illustrate humanism in medicine by
presenting difficult cases grappled with by the Ethics Committees at our two Columbia
Medical Center hospitals. These cases show how challenging cases can be resolved in
an ethical manner. They also serve as preparatory learning since some in the audience
will find themselves in similarly difficult situations and learning in advance how to
navigate in an extreme crisis can be lifesaving.
Ethics for Lunch is made possible thanks to the generosity of the Arnold P. Gold
Foundation. Drs. Arnold and Sandra Gold, renowned for their advocacy of humanism in
medicine, have promoted a passion for compassion. The Golds also understand that
learning takes place best when there is good food in the stomach so their generosity
provides a brain-nourishing free lunch. Dr. Fischbach gratefully announced that the
Gold Foundation will fund an additional year of Ethics for Lunch.
Dr. Fischbach then introduced the riveting case brought to the Hospital Ethics
Committee by the Director of the Liver Transplant Team. Briefly, we have a critically ill
baby in acute liver failure needing a liver transplant and a father – a good match – who
is willing to donate a lobe of his liver for his son. But the HLA typing revealed an
unexpected and unsought finding – the father is NOT the biological father. The
Transplant Team now needs direction – there is no hospital policy in place to guide
whether to inform the father of this finding. In fact, there is little case-law to resort to as
well despite that this is not a rare situation.
So while important decisions must be made whether or not to inform the father, several
factors need to be considered: Who is the patient – the child or the father? Who is it our
duty to protect. How will the marriage be affected by the information? What is required
for fully informed consent? Is there even a duty to inform? Do we resort to the
“community standard”, whatever that is? Do we owe the father who is potentially risking
his life, all the information that is material so he can make an informed choice knowing
all of the facts? Is truth telling the basis for trust?
Our Ethics Committee met on two occasions to debate these questions and the debates
were compelling with strong arguments for and against informing this father. We also
argued forcefully both for and against writing a hospital policy that would include a nondisclosure clause, ensuring that this information would not be made routinely available
in future miss-attributed paternity situations.
Dr. Fischbach then introduced Dr. Kenneth Prager to present the case. An outstanding
teacher and physician, Dr. Prager holds several titles: Director of Clinical Ethics for
NYPH, and Chair of the NYPH Ethics Committee. He is also Director of Clinical
Bioethics for the Center for Bioethics. Dr. Prager is known as a model of compassion
and humanistic care.
THE CASE:
Dr. Prager presented the case as follows: a critically ill four-month old baby in acute
liver failure needed a liver transplant and his father – a good match – was willing to
donate. HLA typing revealed an unexpected and unsought finding – mis-attributed
paternity -- the father was NOT the biological father. No hospital policy is in place to
guide whether to inform the father of this finding and there is little case law to resort to,
despite the fact that this occurrence happens with some frequency. The Director of the
transplant team first brought the case to the attention of the hospital Ethics Committee,
requesting that the Ethics Committee develop a policy to guide the team when this
finding occurs in the future.
During the case presentation, the psychiatrist on the Transplant Team stated that he
believed that the father’s psychological bond with his son was more important than his
biological one and that the team should remember that this information was incidental
and focus on saving the baby’s life. Since the father did not request the information, the
psychiatrist believed the medical team should not disclose the information and allow him
to save the baby. Audience members responded that if the bond was really that strong,
then the medical team should not be as concerned about disclosure and let the man
make his own autonomous decision after being informed.
Dr. Prager explained that there is wide acceptance of non-disclosure among genetic
counselors (although some are starting to question this approach). The argument is
essentially that revealing the paternity information might have severe implications for
the child in need of an organ, for the mother, and for the family as a unit –especially
since they were not anticipating this type of information to be revealed by the test.
Generally speaking, most fathers do not know the genetics of their children. Paternity is
assumed unless parents have reason to pursue proof otherwise. In this case, the father
had psychologically and physically prepared himself for donation and had already made
significant lifestyle changes demonstrating his commitment. And the child desperately
needed a liver.
Many in the audience believed the medical team should not be complicit with the
mother's secret. Secrecy, they argued, undermines the doctor-patient relationship.
Furthermore, both the father and the baby should be treated as patients. The doctor has
an obligation to inform the father of all relevant information so that as a patient he can
make a fully informed decision as to whether or not to donate.
Ultimately, the ethical dilemma can be understood as a conflict between the
consequentialist idea of non-maleficence (which justifies concealing the paternity
information in order to avoid causing harm to the child and family) and the deontological
duty to disclose the paternity information to the father so he can make an informed
decision.
Dr. Prager concluded with a few observations before polling the audience and
presenting the current hospital policy. Dr. Prager noted: (1) Medicine as a profession
has moved away from a paternalistic model of care and instead increasingly
emphasizes medical transparency; (2) Societal values and norms change over time
such that our conception of what is ethical today might be different in the future.
In a poll of those in the audience, proponents of disclosure outnumbered the proponents
of non-disclosure by a large margin.
The Transplant Team members who were present reported that the decision was made
NOT to inform the father and to have the donation proceed as planned.
Dr. Prager noted that in response to the case study presented, the hospital had
instituted a non-disclosure policy. The informed consent that patients sign for HLA
typing now states that when an incidental finding such as mis-attributed paternity is
revealed the patients will not be informed of that information. If they are interested in
inquiring about the paternity of a child, they have the option of pursuing that information
with tests designed specifically for paternity.