Transplant physicians face ethics of paternity discoveries
■ When unexpected news arises during donor-match testing, doctors find they need a set policy on what to reveal.
By Kevin B. O’Reilly — Posted July 6, 2009
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Dad needs a new kidney. His son, wanting nothing more than to return the gift of life his father gave him, gets tested to see whether he can donate a kidney. But the test reveals that he is not just a bad match, but also not biologically related to the man he believes is his father.
In such a situation, are physicians and other transplant professionals obliged to tell what they have learned about the paternity? If so, whom do they tell?
Although rare, wrongly attributed paternity is discovered during histocompatibility testing in 1% to 3% of all living kidney donations, according to a study of U.S. and Canadian transplant data published May 27 in the journal Transplantation (link). Biological children usually have three in six haploptypes match their father's in human leukocyte antigen testing.
Researchers examined more than 13,000 reported father-child living kidney donor HLA-typing tests and counted as instances of misattributed paternity those in which less than one haplotype matched. They also interviewed more than 100 transplant professionals, potential donors and recipients at Canadian transplant centers and found opinion split on whether to disclose misattributed paternity.
Overall, 23% strongly agreed that the information should be shared; 24% strongly disagreed; and the rest were either mildly in favor, opposed or undecided. Of the potential recipients surveyed, 60% wanted to be told.
Transplant professionals took a different view, with 57% opposing disclosure of the paternity information. Nearly 30% of professionals, however, favored disclosure. Some centers told researchers they disclose the information; others said they did not.
Many experts believe that the information should not be disclosed because it was not specifically sought, is not necessarily medically relevant and could be disruptive to the family. That said, experts advised transplant centers to develop policies on how to deal with these situations before they arise.
"It's going to come up, and you want to have thought it through in advance," said David Orentlicher, MD, JD, co-director of the Hall Center for Law and Health at the Indiana University School of Law and also an adjunct professor of medicine at the Indiana University School of Medicine. "We see from this study that there is disagreement. You might imagine at one center that there is a disagreement among people, and they might pursue a less-than-advisable policy on their own."
Brian Childs, PhD, agreed. He said all the transplant centers in Maryland within the last year adopted policies to cover the potential of discovering paternity surprises as part of the informed-consent process for HLA testing. Among other things, the potential recipient and donor are told that testing may reveal misattributed paternity, and they must both agree about whether to be told, said Childs, director of clinical ethics and spiritual care at Shore Health System, part of the University of Maryland Medical System.
"Both of them have to sign the consent" for the HLA-match testing to go forward, Childs said.
On UNOS agenda
In 2006, the American Medical Association adopted ethics policy on disclosing information to patients. Shielding medically relevant information from patients "creates a conflict between the physician's obligations to promote patients' welfare and respect for their autonomy by communicating truthfully," the policy says. But it does not specifically cover the paternity issue.
U.S. transplant centers soon may get rules on how to handle the situation. In April, the Organ Procurement and Transplant Network/United Network for Organ Sharing Ethics Committee recommended that centers obtain informed consent from prospective donors and recipients that they understand "HLA testing may reveal questions of family relationships, including misattributed paternity," according to notes from the meeting provided to American Medical News by a UNOS spokeswoman.
The committee said centers should explain the risks of disclosing that information, "including the psychological, social and health care implications." The organization's Living Donor Committee will next take up the matter, though no official UNOS statement has been proposed.
Lainie Friedman Ross, MD, PhD, who serves on the OPTN/UNOS Ethics Committee but spoke on her own behalf, said the committee is on the right track.
"If we are going to disclose, then this should be discussed prospectively. That seems like a no-brainer," said Dr. Ross, associate director of the University of Chicago's MacLean Center for Clinical Medical Ethics. "We have to acknowledge up front that people have a right to their medical information."