Another Ethical Dilemma: Organ Donation and Paternity Discovery
The story is simple, not uncommon, though unfortunately the ethical dilemma which it produces has not as yet been fully resolved by ethicists, physicians, genetic counselors or transplant organizations. That is why I am presenting the dilemma here for the public to answer.
The story could be told in different ways but here is one way. A father wants to donate part of his liver to his sick daughter who needs a liver transplant promptly. The mother encourages the donation. In preparation for the donation, a blood test for genetic matching is necessary. To the consternation of the physicians, the results of the matching show that the “father” is not the biologic father of the daughter.
The dilemma of this unexpected paternity discovery is what should be done with the information the physicians have obtained? Should the father be informed? Should the daughter be informed? Should the mother, who presumably already knows the paternal relationship, give permission to inform the father and daughter? Or should the physicians keep the information to themselves and proceed with the transplant if the match is close enough for an acceptable outcome? Anyone have an answer to this dilemma? As I noted, currently even the experts can’t come to a consensus. ..Maurice.
posted by Maurice Bernstein, M.D. @ 9:48:00 AM
8 comments
8 Comments:
All parties involved need to know the truth. As their trusted physician, I would expect that you would tell them your dilema. I would follow up with suggesting a routine paternity test with calculated statistics for confirmation.
Zach Gaskin
Lab Director, GFI Laboratory
www.gfilab.com
I think that both parents should be notified together and then allow the parents to tell the child. If the doctors decide to keep the information to themselves then this would create a scientific misconducty of deliberate dishonesty because the doctors would be presenting falsified information/results. And when looking at the 4 principles approach nonmaleficence shld b considered to avoid harm 2the paitient. with beneficence the health care professional should opt 2tell the parents &promptly order 2find the biological father or use the mother as a donor so that they keep the paitient benifits rather than to let the mother decide for her. Moreover, i feel as if this child may have been adopted because why would the mother encourage the father 2donate if she has doubt/knows tht it is not his child?
I would suggest that both parents be told, and then they should be the ones to decide how much their daughter is told. If the father is a man of decent moral character, he will realize this situation is something that is primarily a problem in the relationship between the parents and nothing to do with the daughter per se, which means he should discuss it with his partner first. The docs have an ethical obligation to disclose this information in my opinion.
Dr. Bernstein,
I agree with others that both parents should be told. Whether/when the child is told depends on many factors, such as the age of the child, but it should come from the parents, not some medical provider.
That said, I'd like to approach it from a different angle. I would suggest that the informed consent for the genetic matching test should address this potential situation proactively. That way at least they would know of the possibility before the test, and it wouldn't be quite as much of a shock. Given that from your original post the situation is "not uncommon", such pre-counseling is surely justified.
Another possibility would be to stipulate that the test results be limited to the purpose at hand - donor suitability. It's also not uncommon that for a variety of reasons, genetically related potential donors, including parents and siblings, are not always the best donor candidates, or even a good match. Perhaps the test results should only address the quality of the match (the what) and not the reason (the why), which is not really relative to the situation at hand.
Lisa B. wrote the following today. ..Maurice.
Hi Maurice. Here's my opinion: The "father" was the one getting the blood test so he needs to be the one informed of the negative results. The ensuing discussion on the child's paternity will be his responsibility to initiate (or not). Assuming the daughter is a minor, I would allow the father (or parents) to discuss the results with her. If she is an adult, then I would tell the father and daughter individually. Unfortunately, even though this whole dilemma revolves around the mother's previous actions, the tests and medical realities have nothing to do with her.
Actually both the father and daughter are tested and therefore both are potential "patients". The age and maturity of the daughter, as you suggest, can be told in different ways in this story, however both are potential parties to the discovery. ..Maurice.
No! Now is not the time nor reason they asked for the test! until THAT test is asked for by either party I would leave that to the family to do. The Doctor was not asked to establish paternity, just a match for the transplant, point blank!!! Thanks, Y.B.
Is the recipient a minor? Although that should not matter. There should be a separation of PMI (Priviate Medical Information) between the potential donor and potential recipient. If the potential donor is not a match, the only obligation the donor transplant team has is to say "I am sorry you are not medically suitable to be a donor to your daughter." Any other statement would be a violation of Health Information Portability Act.
Glenn Matsuki, Heart Transplant Recipient 1995
OneLegacy, A donate life organization
http://donatelife-organdonation.blogspot.com
I think Glenn Matsuki has the best answer. It should satisfy the situation... The doctors get their test results, the patient knows it is not a match and so do the parents...If they have more questions or want to know why there is no match... Then and Only then should a doctor say anything about the parental issue... If there was any infidelity in the past..it is known by the mother already.. and may come out ... but it is not the role or responsibility of the doctor to enlighten them unless asked to do so..
leemac
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