The July issue of Pediatrics, the official journal of the American Academy of Pediatrics, contains an extremely thought provoking article discussing the risks and benefits of disclosing an incidental finding of nonparentage during pediatric genetic testing. Nonparentage occurs when one, or very rarely both, of the social parents did not serve as source code for a child’s genetic programming, so to speak. Naturally, we aren’t talking about known adoptions but rather when the nonbiological parent is unaware of the fact that they did not contribute an egg or sperm.
Authors Marissa Palmor and Autumn Fiester, both bioethicists at the University of Pennsylvania’s Perelman School of Medicine, take the position of universal nondisclosure when nonparentage is discovered. They acknowledge the pro-disclosure arguments and, in my opinion, successfully rebut them. They go on to make a compelling recommendation for the incorporation of a universal nondisclosure clause into consent forms which states clearly that parental status will not be discussed.
They start the article off with a case that nicely demonstrates how a healthcare professional might face the difficult decision of whether or not to disclose a finding of nonparentage. Rather than the exceedingly more common paternal nonparentage, the case involves a couple that required the use of in vitro fertilization (IVF) and the discovery that “Mrs. Johnson” is not the biological mother. This is not at all an unheard of complication of the IVF process, although it is rare, as all it takes is a clerical error to retrieve the wrong egg or sperm for fertilization, or even the wrong embryo for implantation.
Again, the possibility that an IVF clinic would make a mistake that would result in maternal or paternal nonparentage is very low. But the overall incidence of nonpaternity in general is probably higher than most dads would like to admit. This 2005 review of nonpaternity studies found rates ranging from 0.8% to 30% depending on the study population and risk factors, with a mean of 3.7% of children being fathered by someone other than the man who identifies himself as the biological father.
Specific paternity testing for legal reasons will likely always reveal the majority of cases of nonpaternity. But as our medical diagnostic capabilities continue to improve and more genetic testing takes place, the incidental discovery of nonparentage will assuredly increase. The ethical considerations of such a finding, and the repercussions of either disclosing or not, are considerable. So it shouldn’t be surprising that there are proponents of either course, with both sides able to cite a long list of arguments. The authors of the paper even admit that while they believe that the nondisclosure side has the stronger argument, they don’t claim to have solved the issue and state that this is an area of much controversy. There is not a consensus approach yet. Palmor and Fiester, after a careful weighing of the risks and benefits, present what is in their opinion a practical approach for the interim.
Arguments in favor of disclosure
So how do proponents of disclosure justify such a revelation? Before I go further, I feel that it’s important to point out that there is a dearth of evidence available for either side of the argument to turn to for support. Everything is a potential risk or benefit. The social variables are far too numerous, and the human reactions to such news too complex, for there ever to be a predictive algorithm, which of course plays a role in the reasoning behind the author’s recommendation of nondisclosure.
Here we go.
Argument 1 – Parents have a right to know.
Argument 2 – The child has a right to know.
Argument 3 – Not disclosing is paternalistic.
Argument 4 – Physicians are obligated to tell the truth
Argument 5 – There are potential medical benefits for the child
Argument 6 – It’s better to disclose now because finding out later might be worse
The rebuttal and arguments in favor of nondisclosure
Argument 1 rebuttal – This approach often assumes that deception was involved, or at least negligence, leading to a gut feeling that a wrong must be righted in some way. A father is unknowingly devoting time and resources to someone else’s child for example, or the family is in the case of an error during the IVF process. I can certainly empathize with the desire to see that justice is served.
But, the authors’ offer up in response, “it is not possible to exercise this right in a way that guarantees the social parents an autonomous, informed decision to receive or waive the information.” Patient autonomy, or legal authority in the case of a minor, is a core principle of ethical medical practice which requires that decisions be based on appropriate education without undue pressure from the healthcare professional. We make recommendations and obtain informed consent, but we generally try to avoid making a decision for a patient.
Imagine the following conversation starter:
Geneticist- “I have information which I can either disclose or not. It was an incidental finding, unrelated to your child’s health, that might benefit certain members of your family but it also might lead to social upheaval in the form of divorce, relocation, loss of resources for childcare, negative psychological affects, etc. Will you consent for disclosure of this information.”
It is hard to imagine that a family would decline such an invitation. In the case of an incidental discovery of nonparentage, by either disclosing without consent or attempting to obtain consent, the parent(s) will almost certainly have had their right to autonomy sacrificed. Remember, the family did not come in actively seeking to investigate parentage. This isn’t like disclosing the result of a biopsy, where the patient has agreed to the procedure and the report of findings, and has had the opportunity to consider the repercussions.
Argument 2 rebuttal – Does the child have a right to know that his father isn’t who he thinks it is. The authors use the example of genetic testing for a disease with no known treatment, the prime example being that of Huntington’s disease. This is a genetic condition which typically presents later in life and results in death roughly 20 years after symptoms begin, usually from pneumonia, heart disease or suicide. Testing the child of a patient with Huntington’s isn’t ethical because a young child cannot give informed consent and, according to Palmor and Fiester, this parallels disclosing nonparentage because both result in only “negative information.”
Argument 3 rebuttal – Is not disclosing nonparentage paternalistic? Palmor and Fiester argue that it isn’t because the information withheld by the physician wasn’t sought out. A good example would be the intentional withholding of biopsy results showing metastatic cancer because a physician thought that the patient wouldn’t be able to handle it emotionally. If the patient consented to have the biopsy performed, and understood what the findings might or might not be, then it would be paternalistic to not disclose the findings. Again in the case of an incidental finding of nonparentage, no informed consent has been obtained regarding the information and the preferences of the family isn’t known.
The authors make the valid comparison to a third party disclosing infidelity of a spouse. Some might appreciate knowing that their husband or wife has been unfaithful while others may be resentful of the intrusion into their personal affairs. A physician with the burden of whether or not to disclose incidental nonparentage, unless some kind of a sociopath, will struggle with the decision and has no idea what impact their disclosure will have.
Physicians must, with every possible intervention, consider both the risks and the benefits. We often must strive to balance the seemingly contradictory duties of beneficence and non-maleficence. A treatment may cure a patient of a disease, but it may have serious side effects. Proper informed consent allows the opportunity for a patient or caregiver to decide for themselves, based on appropriate information from the physician, the personal importance of the risks and benefits. Going forward with disclosure of nonparentage, to me, is more deserving of the label of paternalism.
Argument 4 rebuttal – Are physicians obligated to tell the truth? Does dishonesty damage the relationship forged between a medical professional and a patient? The answer is of course a resounding yes. Palmor and Fiester argue, however, that nondisclosure does not constitute dishonesty in the way that intentionally giving inaccurate information does.
Is not telling a patient about to start a treatment course that there is a remote chance of developing an itchy rash an example of dishonesty? Or if a physician chose to not reveal an unrelated, transient and clinically meaningless mild lab abnormality while discussing a new diagnosis of inflammatory bowel disease? To say that the incidental finding of nonparentage warrants disclosure, while other information does not, requires knowledge of the involved parties that could only be obtained with appropriate informed consent. And if the family has already made it clear that they are interested in parentage testing, they can easily be directed to widely available resources for obtaining it elsewhere.
Argument 5 rebuttal – Can a child benefit medically from the disclosure of nonparentage? This seems obvious on a common sense level, considering how much emphasis is commonly put on family history when assessing health and the risk for future medical problems. Palmor and Fiester counter this argument with the claim that a child is very unlikely to benefit medically with the exception of very rare genetic conditions. The reason for this is that disclosure doesn’t reveal the genetic risks of the biological father or mother, and they may be the same as the nonbiological social parent for all they know.
Argument 6 rebuttal – To me, this argument seems the easiest to refute. It is based on the assumption that the child will eventually find out anyway, so you might as well tell them. But, as the authors state, that is pure speculation. Most of the potentially disastrous outcomes related to disclosure would only be possible when the child is young. The effect of parental divorce, for instance, has considerably more potential for harming the psychosocial development of a toddler than it does an adult.
Why universal nondisclosure?
Absent a compelling argument that not revealing nonparentage to a family risks significant harm, and in light of the very real potential for harm from disclosure, Palmor and Fiester believe that there should be a proactive move to put policies regarding universal nondisclosure into place. They argue that “To disclose or not to disclose?” is simply a question that health care professionals have no legitimate right to decide. They base this declaration on the realization that physicians, ethics committees and hospital administrators, among many other healthcare entities, have no real emotional or material stake in the information.
My personal experiences with nonparentage
As a newborn hospitalist, I spend a lot of time with happy parents and their newly arrived bundle(s) of joy. Unless informed otherwise, such as when the infant has been conceived with the assistance of IVF technology involving donor egg or sperm, there is a general assumption that the baby is the product of the genetic contributions of both parents. Obviously, this isn’t always the case.
In my line of work, the issue of potential nonparentage can come up every now and then. I never bring it up intentionally, but I’ve been asked by some fathers if paternity testing is available. I typically invite them to have that kind of testing performed elsewhere and then I worry about my patient’s future. It’s not a sign that things are going well at home.
Sometimes the issue is forced upon me in a much more uncomfortable way. While we don’t routinely need to determine the blood type of a newborn, it is sometimes necessary when there is a potential incompatibility with the mother. When a mother’s blood type is O, and the baby’s is either A or B, there is a potential for an immune response to have occurred prenatally which could lead to anemia and severe jaundice after the child has been born. Knowing the baby’s blood type helps us determine risk and manage accordingly.
At some point in every pediatrician’s career, particularly if they see newborns all day long as I often do, a father will put two and two together when the baby’s blood type reveals that it isn’t his child. If a mother has O (2 O alleles) blood, and a father has A (AO or AA) blood, for instance, a baby with B (BO or BB) blood would be suspicious for paternal nonparentage. That B had to come from somewhere.
It’s happened to me twice. My response, and it’s true, is that many people base what they think that their blood type is on what they remember from years ago. People are often mistaken. I recommended that they not pursue testing and stated that such testing was not available here but that there were resources available in the community. I then slowly backed out of the room, faked a seizure to get out of work and found the nearest pub.
I agree with the authors’ assessment of the arguments in favor of disclosure. I’m not a bioethicist, but my skeptical sixth sense didn’t go off. I don’t believe that there are any straw men being set up just to be burned down. I think that pro-disclosure arguments do have some merit, I just think that the arguments against disclosure win the day.