Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma in patient care, you vote, and then we present an expert's judgment.
Last week, you voted on what to do with a surprise paternity finding during an organ donor match test. Here are the results:
Who would you tell first?
Father: 42.59%
Daughter: 57.41%
Would it be ethical not to tell either, if the woman is nevertheless a good match?
Yes: 48.67%
No: 51.33%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in:
Misattributed paternity, a staple of 19th-century novels and divorce litigation, is surprisingly common -- with estimates suggesting that up to 3.7% of children are mistaken regarding the identities of their fathers. When non-paternity is discovered in the context of unrelated medical care, such as workup for renal transplantation, physicians must determine whether to divulge this information and to whom.
Telling the father and daughter that they are not biologically related, with its implications of past infidelity, may have devastating psychological and emotional effects upon this family. If the father were still married to the daughter's mother, it might even lead to divorce. In addition, if the daughter were not related but still a potential match for donation, she might now refuse; similarly, should the father qualify for a cadaveric donation at a future point, she might prove unwilling to serve as a primary caregiver, denying the father the social support required for eligibility.
Withholding the information is not also with significant consequences. In the absence of being told otherwise, the daughter may assume her "father" is her biological parent and that his family history is her own family history. She may unwittingly provide false information to her doctors, such as whether or not she has a legacy of certain hereditary cancers like familial adenomatous polyposis syndrome, leading to a life-threatening screening failure. A psychiatrist might not learn of a family history of suicide. The daughter, when having children of her own, might opt not to screen for certain genetic diseases that would shape her reproductive choices: Why should I worry about carrying a gene for Tay-Sachs disease, a condition primarily affecting Ashkenazi Jewish and French Canadians, if I believe I descend from a long line of Scandinavians.
However one addresses the case above, a much more challenging permutation exists: What if a husband and wife come forward for testing and it turns out that they are not only a potential organ donor and recipient, but also biological siblings or half-siblings. Here, divulging will invalidate their marriage in many jurisdictions, but not doing so risks birth defects in future children. And would it matter if the couple were past fertility?
Hospitals now approach these matters in various ways: Some transplant teams choose to reveal the non-paternity and others do not. If choosing to divulge, and assuming both parties have agreed access to each other's medical data as part of the transplant evaluation process, the best path forward would likely be a family meeting where this information is divulged to both parties at once.
Increasingly, patients are told in advance that if the hospital discovers non-paternity during unrelated care, this information will not be shared. However, one wonders whether most patients genuinely register this caveat before it seems relevant, or dismiss it like they do the dentist's boilerplate warning that you could die in her chair while having your wisdom teeth removed.
And check out some of our past Ethics Consult cases: Compel Woman to Have C-Section?, Give COVID-19 Vax to Yourself Before Patients?, Walk Out Over Mask Reuse?