Saturday, May 30, 2009

Kidney donations reveal unwelcome familial surprise

Paternity fraud does show up in the most unexpected places. If its 3% in cases of organ transplant what might it be using a much larger sample size. Some estimates have put it at 10%. MJM

Tom Blackwell, National Post Published: Thursday, May 28, 2009

There can be few more intimate familial acts than donating a life-saving kidney to a sick child or parent, but in close to 3% of father-child organ donations, routine testing reveals there is no actual biological relationship between the two family members, a new Canadian study has concluded.

Patients, donors and medical staff surveyed by researchers at the University of Western Ontario were divided on whether transplant programs should disclose such potentially explosive information to the families.

The authors stress that "misattributed paternity" is still relatively uncommon and should not deter people from participating in living donations, a crucial resource in the organ-starved transplant system. But they say hospitals ought to discuss the topic and consider developing policies on when or if to impart the information to donors and recipients. "It's a rare issue, but it can happen and when it does happen it can bring up very big problems," said Ann Young, the doctoral student at Western who led the study, just published in the journal Transplantation.

"You don't know what the outcome is going to be in terms of family dynamics.... Whether it causes family tensions, it definitely causes tension in the transplant centre, debates about what to do."

One Toronto hospital agonized over the question a few years ago when it discovered a young woman about to donate a kidney to her father was not related to him by blood.

The University Health Network's Toronto General eventually decided to inform the pair, partly because it felt the knowledge might affect their decisions to donate, and receive, the organ, said Linda Wright, the network's director of bioethics.

"You could say that you're breaking trust by informing patients of this and maybe blowing their family out of the water," she said. "On the other hand, people come to us and expect us to be truthful.... We sort of felt that to withhold this information would not be right."

The 18-year-old daughter and her 48-year-old father reacted with "shock and distress" but decided to go ahead with the organ donation, said a 2002 article on the case in the journal Seminars in Dialysis. In fact, the daughter said she would have "hated" Toronto General if she had discovered the truth years later and realized the transplant staff had kept it from her.

Although the majority of kidneys transplanted in Canada come from people who have just died, a significant number - 474 out of 1,177 in 2008 - are harvested from relatives or other living donors, according to statistics from the Canadian Institute for Health Information. Living kidney donations also tend to have better success.

Among the battery of screening conducted to determine compatibility is the human leukocyte antigen (HLA) test, a genetic study. If a father and child do not share at least one set of HLA genes along a chromosome, it means they are not biologically related, though it usually says nothing about whether their organs are compatible.

Ms. Young's team at Western and London's Health Sciences Centre analyzed records from kidney-transplant centres across Canada and the United States. Based on the HLA test results, it identified 40 cases of mistaken paternity in Canada between 1992 and 2006, or close to 6% of the father-child pairings. When estimated data error was factored in, though, the rate was lowered to about 2.5%, compared to 1% in the United States.

The 102 doctors, nurses and potential donors and recipients surveyed by the researchers were about evenly split on whether the father-child pairs should be told.

The authors also talked to 13 Canadian transplant programs, discovering only one had a formal policy on how to handle the dilemma. Another centre described using a case-by-case approach, while a third said it would never share such information, as it was not medically relevant.

The Toronto UHN has a policy, and now asks father-child donors and recipients ahead of time whether they would want to know if the test revealed they were not blood relatives, Ms. Wright said.

National Post

No comments: