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Should the Incidental Discovery of Nonparentage be Disclosed?

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“Ummm, I probably shouldn’t be telling you this.”

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.

Conclusion

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.

Posted in: Medical Ethics

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123 thoughts on “Should the Incidental Discovery of Nonparentage be Disclosed?

  1. rork says:

    When we were trying to estimate mutation rates in atomic bomb survivor’s kids (and controls) in Hiroshima and Nagasaki, we’d catch some not-really-the-father situations, but it was damn rare compared to what we were used to in the U.S. – this was after interviewing both parents alone and asking about it.
    Thanks for this article. Nice writing.

  2. Anrzej Kajetanowicz says:

    Re: Argument 3 rebuttal:
    Just for the sake of argument. What if a physician ordered a test and lab made an error and performed a different test that showed a disease that is not treatable It was an incidental finding. By the logic of Palmor and Fiester physician can withhold the information because it was not sought out.

    What if the genetic testing showed disease that is autosomal dominant but father is not a carrier because he is not a father. Withholding nonparentage information can influence the father not to have any more children.

    1. Missmolly says:

      In your second example, any parent of a child with a genetic disorder which could impact on the parent’s reproductive choices would be offered genetic testing themselves, as de novo mutations in the child are by no means unheard of- that is, there are legitimate ways a kid can have a heritable condition without the parents having it.

    2. WilliamLawrenceUtridge says:

      In the case of an incidental finding with a definite harm, then disclosure would be warranted. The examples in Dr. Jones’ post are of potential future harms, you’ve just identified a definite current harm. I don’t think they are comparable. Similar to your second example – you are comparing “what if” situations to a “we know for certain” situation.

  3. augustus says:

    Despite I’m running into serious risk of getting bashed:
    I agree that it should not be found like that.
    True emancipation would allow fathers to legally get parental testing in the earliest possible moment without any obligations to pay if it’s found out that he’s not the real father. We are talking about 3.7%–doubtlessly a significant amount is due to cheating, something a woman would never have to fear as a reason for nonparentage.

    I don’t know about the US, but in parts of Europe parental testing is forbidden if not all persons involved consent to it. And fathers have to keep paying even if it’s found out they are not the father (and the mother cannot “recall” the original father).

    1. mike says:

      In the US, courts have said once a father accepts a child as his, finding out later he is not the biological father will not end the man’s requirement to support the child.

      I would think that women show claim a man is the father when he is not shouuld be liable for fraud and damages. But courts say a woman fraudulently forcing a man to pay a hundred thousand dollars or so is not a crime.

      1. Calli Arcale says:

        It’s not legally considered fraud in the US, since the laws concerning parentage are old, and if it’s genes that make a person your child, what does that mean for adoptees and those conceived through donor gametes? If you raise the child, and no other father is presented, the child is yours legally. Finding out the child isn’t yours *genetically* is a different matter that to the courts really doesn’t matter.

        It may be emotionally satisfying to call it fraud if a woman lies and says she wasn’t sleeping around, but it’s not legally accurate. As far as the law concerns, once you’ve accepted the child as yours, that condition is permanent.

  4. Windriven says:

    An employee once came to me for advice about this. Her husband wanted paternity testing of a child conceived during a period of tumult in their marriage. I told her to ask her husband precisely what he intended to do with that information. This now seven year old child knew him as her father. He, one presumes, had built a deep parental relationship with the child.

    I don’t believe the testing was ever done though the reason was more likely the husband’s inertia than any argument the woman might have mounted. And by the way, she was adamant that the child was her husband’s.

    All that said, I disagree with the ethicists on this. The appropriate disclaimer in my opinion would state that the genetic testing to be undertaken could reveal unexpected information regarding health issues unrelated to the issue that precipitated the testing to be undertaken as well as issues of parentage and give parents the right to opt in or opt out at that time. That course leaves the decision in the hands of those who will be affected and doesn’t involve hiding information that may prove to have significant health implications for the child.

    1. Young CC Prof says:

      I agree that if you’re going to ask whether the family would want to know, the time to ask is before the test is even performed, through some kind of standardized consent procedure. This way, there isn’t any “Why do you ask?” going on.

      1. Dan Clarke says:

        Yes. Throughout the blog, and especially from the attempted rebuttal of argument 1, I was waiting for this to be addressed. This is a matter that should be decided by those undergoing the testing.

        1. mike says:

          That seems like the best option. Include a check box on the consent form asking the patients if they wanted to learn incidental genetic information such as the possibility of parents being recessive carriers or parental identity.

          1. Calli Arcale says:

            I very much agree. The most obvious and probably safest approach is this: ask before the testing is performed whether any parentage-related information is to be disclosed if accidentally discovered. Let the parents decide if they want to know should such a discovery be made.

            Note: a finding of nonparentage might not mean infidelity. I’ve heard of a few cases where such incidental findings revealed chimerism instead. Two of the cases were women who were quite shocked to be told they weren’t mother to the child they’d given birth to, but were likely to be *aunt* to that child instead — they were individuals who had started out as fraternal twins, merging during a very early stage of development before the cells had really diversified much. So the ovaries had different DNA than the tissues used for the DNA testing. This is considered an extremely rare event, but since most cases can’t be detected except by genetic testing and almost nobody undergoes such testing, it might be much more common than we realize. There’s really no way to know.

  5. Larval_doctor says:

    I’m a clinical geneticist, so this comes up not infrequently in my day-to-day life. With the advent of whole exome testing, which will definitively show nonparentage, we usually do discuss the possibility and allow families to opt out (of finding out about “misidentified familial relationships”), but it’s far from universal. I thought that the article did a good job and changed my mind — I’d previously been in favor of attempting to determine afterwards if the family wanted to know.

    Their solution is not foolproof; however. There are instances where parentage is important to know — as a geneticist I can think of many (all ludicrous-sounding, but real) examples. Here’s one: we found the a child, contrary to the claimed parentage, had been fathered by a close relative of his mother. The coefficient of inbreeding was high enough, and the child’s medical problems were severe enough that we immediately became concerned that he had multiple recessive diseases (something all but unheard of with standard, unrelated American parents.) This information had long term implications for the child, because if he developed more medical symptoms in the future, future doctors would also need to have a much higher index of suspicion for recessive disease. Therefore, we had to put this information into the chart, in addition to undertaking additional testing at the moment. To not explain to the family why all this was happening and to not disclose the information in their chart to them would have been exceedingly paternalistic.

  6. daedalus2u says:

    There are cases where a child naturally conceived and born to a woman does not “test” as her genetic child.

    Some people are mosaic, where their phenotype is comprised of cells with two different genotypes. This is how knock-out mice are generated, undifferentiated cells with genes knocked-out are used to form mosaic zygotes and some of those undifferentiated cells with the genes knocked-out form germ cells and gametes and can be used to generate strains with genes knocked-out.

    This could occur for the male or female parent.

    1. Young CC Prof says:

      People can be mosaic for one gene, or for one chromosomal error, but I really doubt someone could wind up mosaic through enough of the genome to produce offspring who test as unrelated. Or do you have evidence to the contrary? I’d be fascinated if you did.

      1. Iolaire says:

        There is this example: en.wikipedia.org/wiki/Lydia_Fairchild.

      2. rork says:

        Chimeras. It’s rare.
        One made the lay press awhile back when a woman and kids got tested to see if kids could donate a kidney mom needed, and it appeared that they weren’t her kids.

      3. Birdy says:

        There was a case somewhere in the US where a woman lost custody of her children because two of them tested as not hers. The court did not believe her until one was tested immediately following birth and the test showed she was not the mother. It turned out she was a mosaic and one ovary had a different genome than the rest of her body. There are a few other cases I’ve heard of. I’d locate a link if I had more than a few minutes to type this.

        Given how frequently vanishing twins occur (something being noticed more and more with such high resolution early ultrasound beings commonplace) I can’t help but wonder how big a part of the population may be mosaic without realizing it.

        1. Birdy says:

          And that is why I need to refresh the page before hitting reply, hah. Two people beat me to it.

    2. WilliamLawrenceUtridge says:

      Can a child be chimerical due to the father rather than the mother?

      Also, these circumstances leap to mind not because they are common, but because they are rare and therefore newsworthy. While it can happen, it can also be resolved because it’s so bizarre.

      What would be really weird – child tests as related to father but not mother because the guy was cheating and the hospitals switched the babies by accident. There’s Days of our Lives (possibly Nip/Tuck) plot gold in that idea.

      1. mouse says:

        Can a child be chimerical due to the father rather than the mother?

        My understanding is that either a male or female can be chimera (chimerical?). So the mother, father or child could be the chimera, any of which could throw off parentage results.

        Wait, maybe I’m wrong. It makes sense that if the child is the product of two non-chimeric parents, then, even if they are a chimera they would still show up as being related to the genetic parents (like two siblings would).

        So I think only a chimeric parent would show a incorrect result of genetic parentage in a child results.

        1. Calli Arcale says:

          There’s no reason to think it would be more common in either gender, but I would bet it would be noticed more often in women — after all, a woman knows she’s the mom, since that baby came out of her, but if the father flunks the paternity test, everybody’s gonna think “cuckold” first.

          I read about one guy who learned of his chimerism when he went in for fertility testing; he and his wife were struggling to conceive. Turned out, his “undescended testicle” was actually an ovary — he was his own sister, which was messing up his hormones.

        2. WilliamLawrenceUtridge says:

          I’m not asking about whether the child’s gender is relevant to chimerism, I’m asking whether chimerism is always because the mother is a chimera (i.e. blood and bone are from one oocyte, ovaries are from another) or whether two sperm can somehow fertilize the same egg (or perhaps two sperm fertilize two eggs and the resulting oocytes merge, or perhaps the father’s testicles are chimeric, or…wow, the more I think about it, the more confusing it gets). The examples are of chimerism allegedly proving the mother isn’t the mother, is there an equivalent possibility where the father doesn’t appear to be the father because of chimerism?

          I guess what I’m saying is, I need a book on chimerism.

          1. mouse says:

            “is there an equivalent possibility where the father doesn’t appear to be the father because of chimerism?”

            Yes

  7. Holly Louise says:

    It is indeed a tough one. But, I think if a parent has any question about parentage, that parent should inquire and expect an honest answer and if the relationship can’t work through the repercussions, the underlying problems in the marriage already exist irrespective of the parentage of the child. For example, an honest woman upon discovering her pregnancy could state up front if there is any question as to paternity. If she does not, then when it arises years later, she again has the opportunity to explain her thinking in not saying anything up front. If her rationale is similar to that in the above article, a rational husband ought to be able to deal with it and presumably he’d already have been well bonded as the child’s father. Personally, I tend to fall on the side of openness and honesty and dealing with the repercussions, but I can see both sides here.

  8. Grifter says:

    In the end, their argument boil down to hiding information from patients and their caregivers “for their own good”. This is, indeed, inherently paternalistic. To argue that it’s the same as not mentioning an unlikely side effect is absurd–in that case, it’s not mentioned because it’s not relevant, or at least unimportant, when the entire reason that they’re addressing parentage is that parentage *is* important to patients.

    I think it’s a failure of the clinician in the first place not to have mentioned that this discovery was a possibility, and it seems that these defenses are just attempts to rationalize avoiding the issue completely because it’s awkward for the clinician.

    Finding out unexpected parentage information is a known possibility of genetic testing. As such, it should be part of the initial decision-making process and the decision to opt in or opt out of such information should be made THEN. It’s one thing to have the discussion of when the idea hasn’t even occurred to the clinician originally. But having the discussion in the absence of specific circumstances means that you DO know it’s a possibility, and that there are ethical questions involved means that you SHOULD be offering this as something you mention before the testing takes place. And frankly, while many patients might not understand that the discovery was a possibility, I think most would presume that it would be obvious, and if there’s a presumption of NOT informing, I think they’ll felt lied to. If they discovered somehow else later, I’m sure their first thought would be “But we had genetic testing done!”

    I also strongly disagree with the notion that providing the patient with MORE information is paternalistic. Providing information is the expected role of the clinician–it’s what the patient’s there for. When you make it a point to *hide* information, you’re substituting your judgement for the patient’s, which is definitely paternalistic. When you provide information, you are doing what they went to you to do.

    In general, were this about any other discovery that can come up from genetic testing, we wouldn’t be having this discussion. If the test revealed, incidentally, some other major information, the clinician would presume to provide it.

    And there’s no question that parentage is considered major information. In the case of IVF mistake example, there’s almost certainly a tort there against the facility–and you’re not informing the family of that. In the case of, say, infidelity, you’re reinforcing a lie with silence.

    1. Kultakutri says:

      In the case of, say, infidelity, you’re reinforcing a lie with silence.

      Lying is not illegal, well, in most cases.
      Without knowing the background, I wouldn’t even judge the woman (let’s assume that ladies are generally aware whom they gave birth to, genes or not) and her mores. Maybe she was unfaithful, maybe she’s a gold-digger who had sex with anyone who came in her way and secured someone to provide for her and her spawn, maybe her nice uncle raped her and she was too ashamed to report it and to explain to her long-time partner that it’s abortion time. None of my business to pry into one’s privacy.

      While I understand it on the evolutionary level, I strongly disagree with this idea that guy finds his child, the little human he played with, taught things etc. is not a carrier of his genes, that the father should dump the mother and the kid. We’re playing this game of being civilized, right?

      1. Grifter says:

        Well, in the first place, lying about paternity actually is often considered a kind of fraud. In the second, I never advocated that a marriage should end, so I’m not sure why you’re objecting to it if I never said it (and, incidentally, don’t believe it).

        But more to the point: ethics is not identical to law. If the clinician specifically hides information that they have they’ve made a choice to do so, and they are substituting their own choice for the choice of those actually involved–and they’re doing it in a way that (in the specific example you were talking about) reinforces a lie. I don’t see how that can possibly be seen as ethical… “I’m hiding this to support someone else’s lie to you, without reference to your own wishes on the matter”.

        1. Windriven says:

          I generally agree with your analysis of the ethics. But I also wonder how many people are honest with themselves about wanting to know the truth, given the number of people who apparently have trouble handling truths that depart from their presumed script.

        2. mouse says:

          I think it’s important to remember that with this genetic test, the child (not the parents) is the doctor’s patient. The doctor’s focus and first ethical obligation is to consider the best interest of the child(patient). Parents only have rights to see their child’s medical records because it facilitates caring for the health of their minor child. Pediatricians have an obligation to communicate clearly with parents, so that the parents can have the information needed to make the best decisions and care for their child. I don’t believe that implies any obligation to provide information about the child that is not medical and may very well be contrary to the best interest of the child. I find it somewhat disturbing that some people appear to be focusing on data mining the child’s genetic test for intelligence on the spouses fidelity rather than addressing the health needs of the child.

          1. Grifter says:

            Parents have rights to all of their kids medical records, whatever they may be (barring some exceptions for older kids that I’m not going to pretend to be fully aware of). The test provides information–and you seem to be advocating that that information be hidden. You seem, then, to be advocating lie-by-omission for the purpose of manipulating the parents into what you think will result in the best behavior from them…doesn’t that seem pretty definitionally paternalistic to you?

            Would you be in favor of an actual lie from a clinician, if the clinician thought it was in the best interests of the child?

            I would argue that the clinician’s role is to provide information, and give the best recommendations based on the information. Making other decisions without reference to those who are the ones “supposed” to be making those decisions seems to be overstepping the clinician’s role.

            1. mouse says:

              Yup, parents have a right to their child’s medical records (with exceptions*). But parentage is only really a medical concern in very rare cases. Generally parentage is not a medical concern for the child.

              Something is only a lie of omission when both parties have a reasonable expectation that the information is wanted or needed by the perspective recipient.

              The point of the discussion on the topic is to determine what a reasonable expectation is and whether the information is wanted or needed. Until that is established, you can’t merely declare something a lie of omission based on your personal preference.

              I am not advocated the doctor manipulate the patient’s parents into their desired behavior.

              I’m reminding people that the doctor is the child’s health care specialist, topics that not related to caring for the health of the child are reasonably outside the doctor’s responsibility.

              The approach I like best, which I would advocate for is one presented down thread by Linsey Beyerstein.

              “The best compromise is to let parents know in advance that this test can, in rare cases, reveal unexpected information about parentage and let them know that they can inquire further if they’re interested. That disclosure preserves the parents’ autonomy and their capacity to seek additional information, but it doesn’t ask them to commit to receiving this information if it crops up.”

              1. mouse says:

                Shoot – that’s why I seldom use html tags. Oh well.
                Also, I forgot my *

                *If you are in the U.S. consult HIPPA to see the exceptions to the parents right to medical records.

                http://unitedcivilrights.org/members/HIPAA/HIPAA-parent-info1.pdf

              2. Grifter says:

                I agree–and said in my original comment–that the best solution is to talk about it in advance of the test.

                But I also said that I think it *is* a reasonable expectation on the part of the parents that information like that would be provided. It is, after all, a genetic test and, while most people aren’t necessarily familiar with all the ins and outs of what that means, most people would assume that if a huge genetic difference were discovered, it would be disclosed.

                Of not is that the parent who is *not* the biological parent has wasted their money by being tested, if they aren’t the parent, as their genetics are irrelevant (except for, say, organ/tissue/blood donations). Yes, the child is the patient, but the parents are also being tested too–otherwise, parentage wouldn’t even come up, so to ignore their participation in the process seems a bit disingenuous.

              3. n brownlee says:

                Mouse- doesn’t a girl need to know if her female progenitors carried the BRCA genes? Or for men- the kind of prostate cancer that is familial? Or other cancers (or diseases) for which there is a familial predisposition?

              4. Clay Jones says:

                Yes, which is essentially the approach argued in the post. If while looking at the universal nondisclosure clause they state a preference to know parentage, then they can be directed to resources for testing.

              5. Grifter says:

                @Clay Jones:

                So, despite the clinician *having* the information, and the parents *wanting* the information, you think it’s okay that they have to go somewhere else to get it? That seems kind of absurd.

              6. KayMarie says:

                @Grifter

                I’m not sure testing for one gene or a couple of genes for disease testing is enough total data to prove/disprove paternity in the way thetest for many loci to prove/disprove parentage tests are done.

                Now you might get some data from one gene that indicates that there is either an issue of one, or more, of the social parents isn’t the biological parent but it could also be an indication of one of the rare odd things that happens and by itself that one gene can’t be used to prove/disprove the parents of the child.

                The question in that case is who does the full paternity test, and is the lab doing the specific gene testing also qualified or certified to do the full paternity test or would you be better off going to a major company that does thousands of these things a year rather than hope a lab that was set up for something else can wing it?

                So, IMO, it may depend on the situation and you may want a real paternity test done rather than extrapolate the data further than it was really designed to do.

                I don’t know if we need to require a full paternity test be done on every child going in for screening to see if they have a specific disease gene issue just in case you find something odd.

              7. Grifter says:

                @KayMarie:

                But implicit in this question is that the test DID find nonparentage–you’re now putting a further layer on the hypothetical under consideration that, it seems, was not part of the original “thought experiment”, that is, what to do if the result is non-(reasonably) conclusive as to non-parentage. The arguments as presented don’t really address that notion–and it changes the dynamics of the question.

              8. KayMarie says:

                I’m just used to incidental findings during medical test A are not always completely definitive as they would be if you were doing medical test B that is directly measuring that exact thing.

                I suppose we could limit this to only instances where they actually did a full paternity test in addition to whatever single gene they looked at, or the incidental finding has been shown to be exactly and precisely as accurate as an actual paternity test.

                I just responded to how could you ever send someone for another test when you have results type of question. I’m just saying sometimes the incidental results are not definitive and you may need another test before you actually have definitive results.

            2. mouse says:

              @n brownlee – I was basing my opinion on Rebuttal #5 in the article that suggests that family medical history is only a concern is rare cases. I figure I’ll stick to that unless I see a compelling opposing medical argument.

              Remember, if the parents are informed on non-parentage, the child still wouldn’t get information on that actual family health history, they would only know that the not genetically related parent’s history doesn’t apply.

              Also many people don’t have accurate family health histories, even with accurate family trees, it’s all word of mouth, memory and sometimes conjuncture. My father was very into conjucture, I trust very little of what he told me about family health issues.

    2. JS says:

      Grifter I think you have nailed the analysis.

      Clay’s I respect your opinion on the matter but think you come down on the wrong side of it. In your post you admit that if you tried to get informed consent after the fact the “parents” would almost certainly want to know — does that not demonstrate that they should be told? By withholding information that you know they would almost certainly want to know, how are you not being paternalistic?

  9. Daniel says:

    1. Genetic testing, like radiographic testing and biopsies, is a medical procedure. As such, incidental findings should be discussed during the informed consent process.

    2. It is as easy to establish a policy of disclosure as it is to establish a policy of nondisclosure. In medical settings, it makes the most sense to default to disclosure because the preference is overwhelmingly in favor of disclosure — incidentalomas, medical errors, whatever.

    3. In a setting of universal nondisclosure, suppose you come across one of those “very unlikely” cases where a child has a very rare genetic defect. What if it the condition is treatable? Let the child suffer from the condition because you didn’t want to possibly be put in the uncomfortable position of disclosing non-parentage?

    4. The nosy-neighbor analogy is not relevant in a medical setting. Physicians are in a very different position than that of neighbors.

    5. Physicians hold a position of trust and confidence. They are expected to discuss and disclose information associated with the performance of their duties, no matter how uncomfortable it may make them feel (eg, taking sexual histories and discussing sex-related topics). When the fact that the physician withheld information is discovered, the patient’s trust and confidence in the physician will decrease. Decreased trust and confidence in physicians has far-reaching implications beyond an individual’s health.

    1. WilliamLawrenceUtridge says:

      In medical settings, it makes the most sense to default to disclosure because the preference is overwhelmingly in favor of disclosure — incidentalomas, medical errors, whatever.

      But bar the rare cases of a strongly-penetrant genetic variant that results in illness, this is a social, not a medical finding. It’s the rare illness that is autosomal dominant and serious.

      And ultimately, it’ll aways be an “it depends” scenario. You can never set up a universally-acceptable “in all cases” policy, and you can always come up with a hypothetical scenario where you would have to (or could never) disclose parentage.

      The reason this is an area of conflict is because the issue is generally not one of pure medical practice and information. It’s at the overlap of medicine (the technology) and family/society (the implications of the findings).

  10. Jacobv says:

    Facts are facts and when there are medical facts of significance about a patient or their immediate family I cannot imagine a single circumstance where a medical doctor should have, or feel s/he has, control over that information; or presume a position where they can determine its importance or that withholding factual information is within their purview whatsoever.

    Life is complicated and full of unintended consequences for our actions and IMO any discussion of possible risks associated with disclosing IDN is necessarily a presumption or has an acknowledgement that some information should be kept secret to preserve the potential of a better outcome. I can understand that kind of thinking with certain aspects of national defense information. However most of the time that kind of thinking is flat out condescension steeped in hubris.

  11. KayMarie says:

    Chimeras can have cells with two different genetic profiles, well as different as any two sibling.

    http://en.wikipedia.org/wiki/Lydia_Fairchild is an example where the Mom’s ovaries and the cells usually used for genetic testing are different enough she got in legal trouble.

    1. KayMarie says:

      Ack was trying to respond under Young CC Prof’s post. Sigh.

  12. mouse says:

    Interesting article. Reading the article, I’m not sure that the consequences of withholding the information about nonparentage in the cases of IVF was completely considered, beyond stating that accidents happen.

    While accidents do happen, many of these very profitable clinics assure clients that the process is accident proof and tamper proof. Who is keeping records of how often these accidents happen and to what degree should they have been prevented? Without parental knowledge how can the IVF clinic that made the error be informed or held accountable for their mistakes?

    1. Sean Duggan says:

      True. One could draw a parallel to this and how supplement companies are self-reporting for how often medical incidents happen due to use of their product. And I can’t think of any situation where it doesn’t make sense to tell the parents that mistakes were made and their child may be carrying genetics from unexpected donors.

  13. K says:

    I think the pro-disclosure argument in situations where paternity, and not maternity, is under question is the reigning one for a relatively simple reason:

    Nobody should be forced to provide their resources to a child not their own.

    1. Harriet Hall says:

      That is a sexist comment. If nobody should be forced to provide resources to a child not their own, that should apply equally to paternity and maternity. For instance, a woman’s child might have been switched with another at birth due to a hospital error.

      1. WilliamLawrenceUtridge says:

        Ya, K has provided a very “Fathers’ Rights Movement” comment, and they are generally a distasteful bunch. The assumption always seems to be that the only rights and links that matter are genetic, not social. There definitely seems to be a harkening back to the “good ol’ days” when men ruled the family and the money was very much theirs to control.

    2. Windriven says:

      I suppose one might make an argument about supporting a child not one’s own if the error or infidelity was discovered immediately. But once a child has been born and entered the family, the ethical obligation to the child trumps your bruised ego. This is actually recognized by family courts in at least some jurisdictions and should be recognized universally.

      1. Kortash says:

        “But once a child has been born and entered the family, the ethical obligation to the child trumps your bruised ego.” What about the ethics of said women who cheated? Who lied to her husband that the child was theirs? Pretty sure most people can’t afford to raise children that are not theirs. Also, could a Husband knock up another woman and expect that his wife raise it as her own?

        1. Windriven says:

          People cheat. It isn’t right. But it happens for a whole bunch of reasons. The ethics stink.

          But the most important issue remains the kid – perhaps the only blameless party in the whole cluster f@ck.

          “Pretty sure most people can’t afford to raise children that are not theirs.”

          First, what do you mean, “not theirs?” The kid has been part of the family for 5 or 10 years and she isn’t “theirs?” Second, you can afford to raise the child until you find out you aren’t the biological father, then you can’t afford it? WTF??? We’re talking about a kid from whose eyes you are the only father they have. So what are you going to do, sit them down over their morning Cap’n Crunch and say, “enjoy it you little bastard, its the last food you’re gonna leach off me.”

          The wife was remiss in boning some guy not her husband and remisser* for having gotten pregnant in the process. The sperm donor, one surmises in your hypothetical, has flounced. That leaves happy husband to decide if he is the one decent adult in this ménage a trois or just another one of the adolescents playing house.

          Life’s hard, then you die. You can take your dirt nap having been a net asset to humanity or a net debit. Doing the right thing by a kid who calls you daddy is not optional.

          *no, it isn’t a word. Get over it.

        2. DW says:

          An argument can be made that it is paternalistic for the doctor to take it upon herself to reveal information that is not relevant to the reason the patient(s) consulted with the doctor, which the patient(s) didn’t request, and which could be seriously destructive to the patient (child)’s wellbeing (i.e. cause a major rift between her parents, or the people she thinks are her parents …).

          Why would telling this unwanted information be less paternalistic than withholding it? Why can’t the doctor just treat it like any other embarrassing but irrelevant piece of information is inadvertently revealed during a doctor visit – the same way the doctor ignores your cellulite or your birthmarks or your tattoos or all the other unsightly bits of anatomy that the doctor invariably comes upon … averting her eyes b/c not everything that is revealed when the patient takes her clothes off is relevant to what she came in for.

          In short, the doctor should mind her own business.

    3. Claire says:

      This begs the question of what “parentage” means. Legally, under Common Law, if a couple is married, any child born within that marriage has the married couple as parents. A couple who adopt a child are that child’s parents. Parenthood is a social relationship, not a genetic connection.
      Discovering the absence of a genetic connection with a child is prima faciae evidence of adultery, and thus grounds for divorce, but may or may not be grounds for repudiating the child.
      Genetically, there are situations in which a child does not test as related to the parents. Mosaic/chimeras have already been mentioned. Yes, these are relatively rare situations.
      I think what is needed is not non-disclosure, but better education in the general populace as to both biology and the legal aspects of marriage.

  14. Thor says:

    I’ve been in the midst of a related issue, though not medical, so hope I’m not misguided in posting this comment. My father had an ongoing secret affair with my German kindergarten teacher who lived up the street from us. She became pregnant when I was seventeen and close to leaving home. She wanted him to marry her (my parents were divorcing), but my father declined so she found a German husband instead. My half-brother does not know that he is not his biological father, and the father doesn’t know that he is not his biological son. The boy is now forty-two and still lives at home. The mother carries a hefty secret (and so do I).
    He grew up knowing who my father was in passing, because my old man was prominent in the community and remained in the same neighborhood in Germany until his death a few years ago. And my father watched from a distance as his son grew to manhood. But now since his passing, I’ve been severely tempted to inform my half-brother of the truth. I contacted the mother and she is dead-set against this, and begged me not to, saying it would cause the family great turmoil. Most everyone I talk to is also against revealing this secret, citing potential psychological harms for all three individually, and for the family as a whole. I’m completely torn. One option is to wait until one or both parents die before telling him. Or just let it be. For all practical purposes, he had two loving parents. My dad just happened to be the sperm donor. In this situation the truth might not be liberating.

    Any insights, comments, words of wisdom will be appreciated.

    1. Chris says:

      That is tough. My stepsister has no idea who her biological father was. Her mother was the family’s spinster who lived with her older brother’s family. Her job had her move over to the next state in her mid-thirties, but she returned to her brother’s house a couple of years later when she was very pregnant.

      The story that was told to everyone was that she got married in the other state, but her husband left her when she got pregnant. Unfortunately the real story was taken to the grave by her, her brother and his wife. We have tried to dig it up, but we can’t find anything.

      My stepsister tears up when she speaks of this. She would like to know the real story, but she was “protected.” She also finds it frustrating that she does not have the medical history of one half of her genome.

      Of course, unlike your half brother, she spent the first several years of her life being the daughter of a single mother living with her uncle’s family, so not two parents. Then she got dragged into our family, which is a whole other story. So you might want to not tell unless there is some medical history that may be important.

      1. Christine says:

        There is a big difference between not knowing, versus “knowing” all your life and having the rug pulled out from under you in your 40s, so I think your stepsister’s situation is very different.

        1. Chris says:

          Which I acknowledged in my last paragraph, which finished with: “So you might want to not tell unless there is some medical history that may be important.”

      2. Thor says:

        Thanks for responding. My, what stories we have….

        1. n brownlee says:

          It’s very late in his life for this man to learn the truth of his parentage- but it IS the truth. I, for one, am no fan of family secrets. They are often kept, even by the unwilling, ostensibly to “protect” a victim of the secret. I think it’s more likely that they are usually kept to protect those complicit. His mother is insistent that the secret be kept- well I would think so. She allowed him to be bullied and mistreated thoughout his childhood, and allowed him to think it was his father who did it. She is responsible, too. Who is she protecting, again?

          I would want to know. If I now, at age 67, were to learn that I had no genetic connection to my father, my reaction would be, “Well, hot dog!”

          1. Thor says:

            n, that was Lagaya—this child grew up in a loving, fully functional, nuclear family. Actually, if looked at objectively, he was better off being in that family. Not that that helped any—he’s quite a mess.

            I hear what you say about the truth, and that has been my argument:
            “The truth shall set you free”. But, more and more I’m thinking it would be a self-righteous act, creating disarray in people’s lives.

            1. n brownlee says:

              Oops- sorry, Thor. Should have read it all again, and more closely.

              1. Thor says:

                No biggie.
                And sorry to hear about you and your dad’s relationship.
                “Hot dog”—wow, that’s pretty intense.

        2. Chris says:

          Some families put the “fun” in dysfunctional.

          1. Thor says:

            In another forum, I’d give you dysFUNtional—this story is only one of many fun family escapades that demand even more than a face-palm.

            1. Chris says:

              Was yours the father who turned out was actually a CIA operative, like father of a drummer for the band Police?

              Mine had been in the Army’s Counter Intelligence Corps. Lots of stuff happened because we did not have a “need to know.” One of those was that his father was alive and well, who only initiated contact with us after my mother died… my grandfather hated my mother. My brother was very confused when he received a phone call from a man he thought was dead.

              Last summer we had a nice family gathering. Non-family members were entertained by our stories.

              Hmmm, I wonder if there is a “dysfunctional family” forum somewhere?

              1. Thor says:

                I’ll join you there if there is one.

                Not a CIA guy, but a major casanova. We knew this our whole lives, but when I was clearing out the large apartment he had lived in since 1957 (and in which I grew up), I found a partial list of his lovers, including time spent together, and who broke up with whom. We estimate at least a hundred, and some say much more.

              2. Chris says:

                Wow.

                You may have more half siblings around.

              3. brewandferment says:

                That sounds so much like the story line in the ABC show “Castle” pertaining to Richard Castle’s father…that whole truth stranger than fiction bit!

    2. Christine says:

      What a burdensome secret for you to have to keep! My extended family had a similar quandary, though without the added awkwardness of being in close contact. I definitely agree you should NOT tell at this point. 42 and living at home; to find out his mother was lying all those years (and from a third-party who’s known all his life!) could be devastating. It would only make him resent your late father, probably resent you, and feel betrayed by his mother. It’s too late for the truth now, and waiting until his parents die would add to his grief and create unanswerable questions. I agree it would have been better for his mom to reveal his dad adopted him in infancy. Likely she was embarrassed or feared he would feel embarrassed, or have adjustment issues. (It used to be common not to disclose adoptions.) I’m sure this knowledge has been a source of anxiety for you: give your little brother the gift of ignorance.

      1. Windriven says:

        Well said.

      2. Thor says:

        Appreciate your words and resonate with what you say—it’s sinking in that it probably would be best for all parties to let this issue go. Ignorance is bliss, at least in this case.

        I got to know this lad recently, having gone back to Germany three extended times since 2010. We even talked about my father, as the issue of the day was his passing (another topic that came up in one of our discussions was that he considers lying to be one of the worst things people do). He’s known about me all his life because his mother had an ongoing sort-of friendship with my dad after the affair, who was “the father of two American boys she taught kindergarten to in the 50′s (my brother and I walked there, usually in our lederhosen). Amazingly, her husband and my dad became friends and even went to jazz concerts together. Anyway, if I’m honest about it, the main reason to tell him now would be a selfish one—ohh, a long-lost brother, etc.

    3. mouse says:

      @Thor – I think this situation is very similar to adoption. Back before the 60′s/70′s it was thought that it was better to not inform a child that they were adopted, so they would grow up with a “normal” life. Unfortunately, this idea lead to many children finding out they were adopted later in childhood or in adulthood, sometimes by mistake or even from a relative with malicious intent. This approach lead to a lot of hard feelings, distrust and alienation. Turns out growing up knowing an uncomfortable truth with the support of your family is much more emotionally healthy than being surprised with it later in life.

      But that ship has sailed, due to the choices of the parents. ;(

      I will say I’m not wild about telling the son after his parents have passed. I know adults who received similar news (having an unknown half sibling from a previous marriage in one case) after their parents passed. The fact that they could not discuss the issue with their parents, ask questions or even vent, seemed to prevent a meaningful resolution on the topic and acerbated their grief and/or unresolved resentments.

      I guess all you can do is weight what the interested parties have to gain from hearing the information vs what they have to lose. Unless the son needs a kidney and you are a possible match, I’d guess they have more to lose than gain. But that is a guess based on your summary.

      1. Chris says:

        “Unfortunately, this idea lead to many children finding out they were adopted later in childhood or in adulthood, sometimes by mistake or even from a relative with malicious intent. ”

        My biology instructor told the class that after giving a class on genetic variations like tongue curling, ear wax, etc., one student went home and decided to try (I think) the tongue curling. It was then he found out that he was not genetically related to his parents.

        1. Iolaire says:

          Not necessarily. I learned at school about tongue-rolling ability being a straightforward example of inheritance of a dominant gene. My parents and sisters can tongue-roll; I cannot, so deduced that my parents were both heterozygous for this trait and that I had two copies of the recessive gene.

          Then I grew up and married a man for whom the same was true.

          Then we had a daughter who is indisputably ours. Since neither of us has the tongue-rolling gene we knew that she wouldn’t be able to do it … but she can. And she isn’t just able to roll up the sides of her tongue, she can simultaneously curl the tip back and make her tongue into this weird three-lobed shape.

          This suggests either that tongue-rolling isn’t the simple genetic story it’s made out to be, or that the necessary genetic change can arise spontaneously in the offspring. This student could equally well have been his parents’ child.

        2. Alia says:

          A friend of mine teaches biology at a junior high school. Once he was talking about genetics, recessive and dominant genes, etc, on the example of blood groups. And then one kid asked if it is possible that parents with these groups had a child with that group, because that was his situation. My friend then said something about genetic mutations that can happen but that was one of the hardest moments in his teaching history, he said. He did not know whether the kid was adopted and did not know it, IV with donor sperm/egg or another man’s child.

      2. Chris says:

        As an aside, there are other weird ways to find out about parentage. Sir Paul Nurse only found a few years ago that he needed to ask about his parents when the US immigration would not let him get a green card to work the country due to irregularities in his identification, despite his Nobel Prize. This was when he was finally learned his sister was his mother, and his mother was his grandmother.

        Like above the really bad part is finding out after the parent’s death. From the linked article:

        Nurse says he feels no anger or resentment at the deception. “Indeed, I have huge respect for my grandparents. They did their best for their daughter and for me. I had a very happy childhood. I just feel sorry for my mother. She ended up never having me as a child. I only learned after her death, she had kept four pictures of her children next to her bed. Three were her legitimate babies. I was the fourth.”

      3. Thor says:

        mouse, thanks so much for your input.

        When I spoke to his mother, I told her I was considering telling him. She said it would have drastic consequences for her son and that it would be a terrible blow to the family. At that time, I was more on the tract of “truth, justice, honesty, heritage, genes”, ie. a bit selfish. I thought that knowing may benefit him, perhaps shed life on various aspects of his life and self.

        It stands to reason that discovering this after the parents’ death can be detrimental. This is important for me to understand.

        1. Chris says:

          It can be very frustrating when you find out and the folks have died. You cannot get any closure when you want to learn their story. My grandparents divorced when my dad was young, so whenever I asked about his mother and her family I got the cursory “they are dead” answer. I found out later that at a time I was in his home town both his mother and grandmother were still alive and kicking. I could have just walked into his grandmother’s travel agency and asked questions.

          So it is best if you don’t tell your half-brother that wee bit of information. You can’t miss a loss opportunity if you don’t know about it.

          Though in my checking around, I found out that my grandmother was adopted in 1901 (far west town that was still being homesteaded, you can figure that some calamity happened to her mother). So there is another lost story, that even my secretive father does not know about.

          Also it shows that genetics is only one thin thread in families. There are other more potent relationships. Despite several very rocky years in our youth, in our older age I find myself more in tune with my stepsister than my genetic sister.

          1. Thor says:

            Appreciate your input. This whole exchange has been quite meaningful and the message is really sinking in. Still, there is an element of sadness and loss for me. Dust in the wind…..

        2. WilliamLawrenceUtridge says:

          I thought that knowing may benefit him, perhaps shed life on various aspects of his life and self.

          From your description of him, it doesn’t sound like he’s particularly healthy now. It would seem that the kind of people who handle this sort of news are those who are comfortable and secure enough with their identity to realize that your genetics are not your identity. It doesn’t seem like this is the case with your half-brother, and it might merely add a further layer of confusion to his already disordered life.

          If you want to tell him primarily for your sake, well, that might not be the best reason. You might ask yourself why it’s important to you rather than to him. He’s already in your life, it seems like you are at least passing acquaintances if not friends. So making him “part of the family” could consist of inviting him to family-type gatherings as a friend of the family. It sounds like he needs support and caring. You don’t need to be a blood relative to provide this, you can do so as a friend.

          Of course, it all depends on him and how he interprets family. He might be comforted by the fact that he has made a friend who is not family, and may react to your disclosure with distress since it means the only people who can put up with him are family. Or, he may be heartened because it turns out this one person he is such good friends with is actually family!

          So what does he think of his family, of the idea of family, of how he makes friends and keeps them?

          But I still lean towards leaving it alone.

    4. WilliamLawrenceUtridge says:

      If they’re happy in the lie, who does it harm? Did your father die of something that suggested his medical history might be relevant? While telling your half-brother this secret might make you feel better, I doubt it would make anyone else feel better. Your half-brother can’t develop a relationship with his biological father, or vice-versa. You apparently already have a relationship with him, a voluntary one based on friendship rather than blood (from him anyway).

      I see essentially zero benefit to telling your half-brother, what is the upside from your perspective?

    5. Murt says:

      Nonsense. I am one of those who had a “child” who I thought was my Son. Fortunately, at around His age 5 years old, it was discovered and validated by DNA.

      Although it hurt (for years) it was the right thing to do as too many Men are raising children that are not theirs. I know it is a tough call but the blame MUST be placed on “Mom” who mislead the “Dad” that it might not be or isn’t theirs. You cannot pick and choose who a Child’s BIOLOGICAL FATHER IS – all parties have a absolute — ABSOLUTE – right to know !

      Anyone who says different might have some academic credentials — but not the type that gives them the right to withhold this type of information.

      I DO subscribe to the idea of telling “Mom” she better fess up or you will, but it is a “no-brainer” it has to be disclosed and the sooner the better. The child certainly is innocent and if blame is important it falls on one person’s shoulders – the Mom who withheld the truth !

      TRUTH IS EVERYTHING.

      Odds are suspicion already existed in the supposed Father…but sometimes Love blinds us, taking them off is NOT WRONG, and is required so those involved can process it and move on. The sooner the better !

  15. Beamup says:

    To me, this is the money quote of the post:

    They argue that “To disclose or not to disclose?” is simply a question that health care professionals have no legitimate right to decide.

    It reveals the fundamental inconsistency of the anti-disclosure position. Health care professionals have no legitimate right to decide… and therefore they must make sure to decide?

    This is most striking in the supposed “rebuttal” of Argument 1. If you boil that down, it’s claiming that making the decision on behalf of the patient without consulting them is somehow LESS (or at least no more) of an autonomy violation than asking them a question about an emotionally charged subject. This is clearly ludicrous. It also assumes, without justification, that the quoted conversation starter couldn’t be materially improved upon.

    If you think about it a bit longer, you’ll notice that this “rebuttal” actually makes the pro-disclosure case VERY strongly. It could be paraphrased as “we know that effectively all people, if asked, would want the information. Therefore we will choose to withhold it from them.” Nondisclosure is explicitly contrary to the likely will of the patient. The argument here seems to be assuming that the reason people would say “yes” to the conversation starter is principally or exclusively because of the presentation, not because they genuinely want to know. That’s not a legitimate assumption.

    The rebuttal to 2 assumes that the child is still a minor, so at a minimum the case where this information is learned after the child reaches adulthood must also be considered.

    The rebuttal to 5 is unconvincing – I’ll buy that the odds of it making a practical difference may be small, but certainly any difference it DOES make can only be negative. You may not know what the *real* family history is, but at least you won’t be making decisions based on a faulty history. (Known unknowns vs. unknown unknowns.) So the medical history argument has to come down in favor of disclosure, though the weighting is an interesting question. And if the anti-disclosure case wants to argue that the odds are low enough for this factor to be outweighed by other considerations, then the burden of proof is on them to demonstrate that the risk is indeed small. I see no attempt to do so here.

    I would finally argue that the entire article is attacking a strawman, since it completely ignores the “discuss the possibility of incidental findings beforehand” option which many commenters have already noted. If nonparentage were included in a list of possible incidental findings, it wouldn’t be overly charged.

  16. Kate says:

    Interestingly, when my second child was born in March, they tested his blood type and it was A. My blood type is O and my husband believed his to be O as well. I was absolutely certain our child was our child so I was sure there had to be an error in either the testing of our son or in my husbands memory. Since my husband has hemochromatosis, he is frequently having blood drawn so at his next blood draw they tested his blood type and sure enough it was A, despite being told by the Army that it was O. Thankfully, he never doubted my fidelity!

  17. Lagaya1 says:

    I knew a man who found out accidentally as an adult, that his “father” was really his stepfather. The stepfather and mother were both aware of this. To this man, the truth was a huge relief. He had always been treated harshly by the stepfather, who treated his biological children much better, and now he had the answer to why he had been so treated. He went on to meet his real father, with whom he shared a growing bond and admiration.

    A doctor owes the patient the truth. It is not their job to decide if the patient can handle it or not. The patient may be glad to know!

    1. Windriven says:

      His stepfather was an ass. I have bio and step kids and I feel certain that they would all agree that I treated them the same.

      1. Beerce says:

        Step kids are a bit different than dude-who-porked-your-slutty-wife’s kid… Although unfair (especially if you knew and accepted it), it might be a bit harder to treat that kid the same as all the others.

        1. Windriven says:

          Sh!t happens. Be pissed at your wife. Divorce her if the idea of her being a ‘slut’ is more than you can overcome. But once you are father to a child, biological or not, you need to man up. It wasn’t the kid’s choice or fault. You can elect to make something positive out of the situation or you can do your level best to screw up a third life because your ego is bruised. The choice you make says most everything that anyone would ever need to know about you.

          1. mouse says:

            Well said, Windriven!

            1. Thor says:

              ditto!

        2. mouse says:

          I would add, If you think about a child as ” dude-who-porked-your-slutty-wife’s kid… ” Then it’s going to be harder to form a good relationship. If you think about a child as “kid who’s face lights up so bright when he smacks a baseball, that everyone around him smiles” or “kid who constantly has bruises on her legs because she climbs everything in sight, but is afraid of small dips in the road” or “kid who was strangely afraid of pictures of frogs when he was a toddler” or “kid who loves to be tickled” or “loves maps so much that he could name the continent of any country by forth grade”… then it’s a lot easier to build a happy relationship that is rewarding for both of you.

          1. Thor says:

            Wonderfully expressed, mouse—brought a tear and a smile.
            I guess we don’t always have control over our emotions and thinking
            processes. We may have good intentions but can’t manifest them in the practical, real world.

            1. mouse says:

              @Thor – It’s true we don’t have often have control over our thinking. We CAN sometime choose to validate or invalidate our thoughts, though, and we can sometimes choose to redirect our thoughts and activities into a more productive direction. Even if we manage to do it sometimes, not all the time, that can be helpful.

              But, I don’t intend to be the thought police. My comment on thoughts was more in the spirit of a tip that has helped me, not a judgement of other people’s thoughts.

              I would note, though, that a internet comment is not a thought. I believe negative feedback on behaviors is sometimes appropriate.

              What do you think?

              1. Thor says:

                Absolutely, Mouse. I, personally, can vouch for the importance of receiving negative feedback (criticism) in changing my behavior for the better. Without it, positive change might be much slower in coming.

                Regarding the appropriate parent-child relationship (regardless of biology) ‘a la Windriven’s and your comments, a parent’s best theoretical and planned intentions often get sabotaged by emotions not under one’s control. It can’t be forced to feel a certain way, even though one knows it would be beneficial and productive. But, as you said, we should try. And keep trying, practicing our best to make the best choices regarding our thinking processes, especially when it comes to children. The problem is that thoughts (and choices), mostly just emerge into consciousness without our control. Actions ensue from there. And waaay too often, the poor kids suffer the consequences of unjust parenting, as a result of misguided thinking.

              2. mouse says:

                Agreed Thor

    2. WilliamLawrenceUtridge says:

      A doctor owes the patient the truth. It is not their job to decide if the patient can handle it or not. The patient may be glad to know!

      You’re drawing this general conclusion from a particular situation though; there are other examples where you could draw the opposite conclusion – X was the nonbiological kid of Y, Y always treated him great, when X later on found out that Y wasn’t their father, they became depressed and committed suicide.

      The patient may not be glad to know, which is why a universal rule is extremely unlikely.

  18. The only one I think I really might have a problem with is Argument rebuttal 5

    “Can a child benefit medically from the disclosure of nonparentage?”

    “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”

    Instead of the risk of missing family history, what about the risks involving the false, inaccurate family history?

    I suppose it’s possible that in various situations, a child (or in the future the adult) could undergo unwarranted medical tests/procedures that incur unwarranted risks/harms based on a false family history indicating a basis for testing/procedure. ex: Family history of prostate cancer in conjunction with certain symptoms/findings might result in biopsy (with definite risks)instead of watchful waiting.

    “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.”

    Nondisclosure does introduce a false family history, which can carry its own risks, can’t it? Is this concern minor enough to be trumped by the other rebuttals?

    ————————
    “I then slowly backed out of the room, faked a seizure to get out of work and found the nearest pub.” -Best line in the post.

    1. mouse says:

      That IS a great line and I missed it until you pointed it out. Thanks!

      1. Chris says:

        Rats, I missed it too! I must have skimmed too much. But it matches exactly to the very short podcast I linked to about the mixed up samples for infant blood typing, just a couple of comments after this one.

  19. simba says:

    Would there be a place for an oddly specific question in the informed consent for these types of tests?

    ‘This test can occasionally discover cases of mistaken parentage/nonparentage. If you want to be informed about this, should it occur, tell us now.”

    Then it’s before the test and it’s not an “Um, well, we found something vitally important which may eat away at your soul. Want to not know about it?”

    1. KayMarie says:

      Having dealt with IRBs and things that is how I would do it. Prior to the samples being taken have a list of potential incidental findings (or categories of types of findings) that could show up and have them indicate if they want that information or not.

      I would also have the expected it might be a false positive or other misidentification risk levels as best as they are known. As thinking you aren’t the parent for a few weeks while they get it sorted out as one of those odd rare weird things that happen. At least you know that there may be additional tests to confirm or explain the incidental finding.

  20. Chris says:

    By the way, I recently listened to the experience of a lab tech (now a graduate student) when the blood results did not match the baby’s parents:
    http://www.epidemiological.net/talking-tuesday-the-type-b-baby/

    There was lots of anger, angst and presence of police that could have been avoided if the samples had not been mislabeled.

    1. Ren says:

      Thanks for the plug. Yeah, you have to wonder how often these kinds of things happen because of errors in sample processing or other errors. I’m sure they’re in the minority, but they can cause a lot of grief.

  21. Carl Fink says:

    Frankly, reading this as a non-medical person, it sounds as if Dr. Jones and the authors he cites are trying to avoid disclosure, not for the patient’s sake at all, but to avoid one more unpleasant situation for themselves as physicians.

    1. KayMarie says:

      I also do think there is some risk-benefit analysis in it, not just I don’t want to be uncomfortable.

      Do I blow up your whole family, cause damage to the kids (although some children of divorce are fine) and whatever other potential harms there are from this (if nothing else costs for marriage counseling, etc) when no good will come of it. It won’t change medical treatments or help prevent diseases, etc.

      I think this is why I like the idea of letting patients know up front what the potentially risky information is and let them decide if they want those types of information.

      I mean if I do not want to know the sex of my child before giving birth and they see the boy parts on full display during an ultrasound should the doctor be forced to disclose that information. If I have the opportunity to state my preference for disclosure before the test, or refuse the test because I don’t want that information known by anyone that should be my decision. The doctor shouldn’t be the one to decide what I can handle or not,

      While I tend to be more of a better to know the whole truth now and deal with it now kind of person, I don’t think I should have the ability to force that on others.

  22. Patrick says:

    People who cheat while in closed monogamous relationships are vermin who should be exposed at every available opportunity. Disclosure of non-parentage should be mandatory and made public via Twitter.

    1. Thor says:

      Aha, the morality police in action. Sometimes gray is the color, not black or white.

    2. mouse says:

      hmm – I’m not that familiar with twitter. Would that be
      #selfishlyusingachildinanimmatureattempttogetbackatmyspouse #extremeHIPPAviolations
      ?

      1. n brownlee says:

        Thunderous applause.

  23. Lindsay Beyerstein says:

    If I were writing the prior disclaimer form, I would say something like, “In rare cases, these tests can reveal unexpected information about who the biological mother or father of the child is. Since this is a health test and not a parentage test, it is not our policy to volunteer information about parentage, but if you would like more information, please ask, and our counsellors will be happy to answer your questions.”

    I like that better than the “decide in advance whether you want everything dumped on you” option. Just let the patients know that this information might come up and let them take the initiative to ask about it, if they decide that’s something they’re curious about.

  24. Lindsay Beyerstein says:

    The technological context is important to the ethical question. Here in the U.S., paternity tests are available in every pharmacy, and in the Maury Povich era, everyone knows they exist. People don’t need genetic counsellors to give them this information. If they want to know, they can find it out themselves for $29.99. It’s not like the genetic counsellor has a monopoly on this information anymore.

    The bottom line is that parents are going to genetic counseling to find out if their kid is at risk of certain diseases. If the genetic counsellor tells them that the kid is not at risk of disease X, that’s what parents came to hear. The counsellor doesn’t have to get into how she knows that the kid’s not at risk, unless it’s one of those unusual scenarios where you can’t avoid discussing parentage because the test revealed close inbreeding, or something like that.

    The best compromise is to let parents know in advance that this test can, in rare cases, reveal unexpected information about parentage and let them know that they can inquire further if they’re interested. That disclosure preserves the parents’ autonomy and their capacity to seek additional information, but it doesn’t ask them to commit to receiving this information if it crops up.

  25. Jane Cobb says:

    Unfortunately the article referenced is behind a paywall.

    1. WilliamLawrenceUtridge says:

      Isn’t it delightful that Dr. Jones gives us a summary and analysis of it then?

      If you really want the full article, try e-mailing the lead author. They are generally happy to send you a PDF. May I suggest not redistributing it without permission, as a courtesy.

  26. Kiiri says:

    I am late to the party buy my two cents. My husband and I struggled to conceive for many years. I would have been happy to adopt a child since to me parentage doesn’t account for month, an adopted child would still be mine to raise and love. My husband feels that ‘he couldn’t love an adopted child as much as a biological one’ so we opted for fertility treatments. We did not have to do IVF, but IUI was involved. I still remember that while in labor with our son he piped up that he was unsure if the baby was ‘his’ or not. It was meant more of a joke at the time, although at that point (well into 40 hours of pain, lack of sleep, and no food) I was not amused at all. I find that attitude deeply baffling. If our son was found to have been the result of an ‘accident’ the sperm or egg of other people he would still be mine. I have loved him, held him, snuggled him, read to him, fed him, and sheltered him his whole life. His biology is meaningless to me. I am his mommy. My husband, who is an excellent stay at home dad I think sells himself short thinking that he would not be happy unless sure it was his sperm that had united with my egg to create this perfect small being. While I agree that cheating is morally wrong, there are instances where a woman (faced with a male partner who could not give her a child) might have in the days before widespread fertility clinics have slept with another man to conceive. In fact my grandmother told me stories of how that was a fairly common practice in the ‘old days’. If a woman wanted a child, and didn’t conceive, it was not unheard of to take a lover for the sole purpose of conceiving a child. It was even not unheard of for the husband to abet this in order to be assured of having children. So this hardline ‘the woman is a slut’ mentality should have no place. For my part, I would be just as happy with a blanket non-disclosure. For my family in particular if my husband found out now that his sperm hadn’t been used to create our son it would be deeply emotionally upsetting to him and in my mind not worth his mental anguish and disruption of our family unit.

    1. WilliamLawrenceUtridge says:

      In fact my grandmother told me stories of how that was a fairly common practice in the ‘old days’. If a woman wanted a child, and didn’t conceive, it was not unheard of to take a lover for the sole purpose of conceiving a child. It was even not unheard of for the husband to abet this in order to be assured of having children.

      Not to mention this is an outright sexual fetish for some.

      The whole “wife is a slut” as the only angle that can be taken is insulting to the wife, their sexual partner(s), and the diversity of the human experience.

  27. anon12345 says:

    It seems to me they cherry picked this case about in vitro fertilization to avoid talking about the vastly more common scenario where a woman has lied about the circumstances surrounding conception.

    It is quite obvious who the mother is in a birth in almost all cases. Women also have the option to terminate an unwanted pregnancy but a man who fathers a child has no option to opt out of the responsibility if he is the paternal father.

    Because of this, the ethical thing to do would be to change the law surrounding birth and determining paternity at birth. Paternity testing should be mandatory if a man is to be put a birth certificate so that both the individual and the state have all the necessary information before a huge amount of of responsibility, both legally and financially, is made incumbent upon this man.

    If this were the case there would be less paternity fraud and there would be no ethical problems for doctors later in life when comparing genes.

    1. mouse says:

      “It seems to me they cherry picked this case about in vitro fertilization to avoid talking about the vastly more common scenario where a woman has lied about the circumstances surrounding conception.”

      Try reading the whole article. They make it clear that non-paternal findings are the most common, that unintended non-paternity in IVF are rare.

      No, most of us are not willing to change our whole legal paternity system to suit your paranoid desires. It’s like requiring everyone get a home alarm system because you are afraid of break-ins.

    2. Windriven says:

      “the ethical thing to do would be to change the law surrounding birth and determining paternity at birth. Paternity testing should be mandatory if a man is to be put a birth certificate so that both the individual and the state have all the necessary information before a huge amount of of responsibility, both legally and financially”

      There is nothing preventing you from doing that on a personal basis. Tell your mate that you intend to genetically test every baby to be sure its yours before you accept paternity. That’ll teach her to keep that va-jay-jay under lock and key. And it will help you to build a strong and enduring relationship – always good for children.

      Me? I never had any doubts about my genetic contribution to my children. But to be honest I never gave it any thought either. It certainly never crossed my mind to have them tested. And as I’ve noted elsewhere: what exactly are you going to do with that information anyway?

      If you are that uncertain about your relationship with the egg donor, maybe you ought to keep your sperm on the scrotum side of your zipper.

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