A non-ideal solution to wrongful birth

Wrongful birth lawsuits seriously rub me the wrong way. I am ridiculously pleased that my disabled son has joined us here on earth. But even if I wished he had never been born, I cannot ever imagine publicly asserting that I wish my disabled son had never been born. I can’t imagine the message it sends to him (although he’ll probably not understand it, but still). Or the message it sends to my other children that my love for them might be conditional on good health. It seems totally counter to everything about the special obligations a mother has to a child.

Some may think that there are some disabilities so severe it might have been better for the child not to have been born at all. That is not what a wrongful birth lawsuit is about. Wrongful birth lawsuits are not lawsuits brought on behalf of the child. They are not an assertion for the child’s sake that the child’s life was not worth living. They are not about the harm of existence to a severely disabled child. Those lawsuits are wrongful life lawsuits, and are disallowed in most places.

Wrongful birth lawsuits claim that the parents are harmed by the birth of their child. They must assert that their lives are worse because their child was born.

I will stress that I do not speak for all parents of kids with special needs here. My husband thinks wrongful birth lawsuits are totally morally legit, and so does my closest friend-mom-with-a-kid-with-my-kid’s-syndrome.

Art Caplan, a famous bioethicist, offers a solution to the wrongful birth problem. Recently, a couple received a false negative on their prenatal genetic testing. The child, now 4, was born with Down syndrome. They sued for wrongful birth, won $3 million, and have been vilified. (I disagree with what the couple did, but the degree of vituperation against them is totally out of line.)

Caplan argues that rather than making parents publicly assert that they would have aborted the child had they known of the chromosomal disorder, these kinds of cases should be handled by arbitration. In that case, the parents don’t have to assert that they would have aborted the child.

It’s an appealing solution on its face. But what are the grounds of awarding money to the parents unless they would have done something different than they did? If the mistake made no change to their actions, then why should they get anything? All Caplan’s solution has done is merely turn an explicit declaration that the child should have been aborted to an implicit one. And the problem remains.

 

Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.

74 Comments

  1. Rose,

    I continue to be baffled by your position. Do you believe that it is better for a woman to give birth to a child that will be born suffering, live for a few hours, and then die? Do you believe that, in every situation, children should be born, regardless of what that life might be like? It seems like you’re imposing your own story onto every imaginable situation and trivializing the scenarios endured by other parents. Here is one: http://www.texasobserver.org/cover-story/the-right-not-to-know Are you arguing it would be better for that child to have been born?

    • YES! it is better to give birth to a child who will live for a few moments and then die… provided you donate his organs to other children, who otherwise would not have lived!
      (also, please eat your folic acid, folks.)

    • I’m so sorry that Rose didn’t make the argument you wish she had.

      The argument here is not that in all cases, a child forecast to have special needs ought to be brought to term. The argument is that the mandatory requirement in a wrongful birth suit of contending “I would have aborted my child if I’d known how things had turned out — it would have been better had my child never been born,” is a statement fraught with moral gravity and one that is necessarily inconsistent with traditional notions of a parent’s love for his or her child. One need not be a rabid pro-lifer to appreciate that this is a pretty heavy thing to say to anyone, and something that, if stated with sincerity, runs crosswise with the moral obligations presumed by our culture upon a parent-child relationship.

      I’ve never seen Rose argue that a parent who did abort a child necessarily made a bad decision — her position has always been that neither she nor we nor anyone else is in a position to judge such a decision. I have never seen any implication that her own story is anything but a demonstration that a decision to carry a child that will have special to term and raising that child, with all the burdens associated with it, can result in a happy outcome. At most, she urges other parents in situations similar to hers to consider that possibility with sobriety and an open mind. In the corpus of her writing, I have nowhere seen her suggest that she would deny other parents the liberty to effect decisions different than her own.

      • “The argument is that the mandatory requirement in a wrongful birth suit of contending “I would have aborted my child if I’d known how things had turned out — it would have been better had my child never been born,” is a statement fraught with moral gravity and one that is necessarily inconsistent with traditional notions of a parent’s love for his or her child.”

        Is it necessarily inconsistent with this? If so, why? I can think of many reasons why the choice to abort can be appropriately reconciled, if not demonstrative of, an absolute love for a child.

      • Burt,

        There is no inconsistency – literally none – in saying that parent who loves a child can wish he or she hadn’t been born. I can’t even begin to imagine the disastrous consequences of being forced into a situation in which that question has to be considered, but I also can’t imagine saying that the parental love of a child is inconsistent with recognizing the agony of suffering.

        • To build on this, would we consider a woman who became pregnant in a concentration camp to violate the norms of parental love if she opted to abort rather than raise her child in the world she currently inhabited? Her decision might not be the RIGHT one, but it can certainly be motivated by just as strong a love for the child as any other parental choice.

          • But you do seem to think that every decision to abort is solely motivated by what is convenient for the parent.

          • No. not at all. I’m not taking about abortio I’m talking about saying something about a child who has been born.n here.

          • But you are saying that a parent thinking, “I would not have had this child if I knew…” has come to that conclusion based solely on their own convenience, no?

          • Fine. Asserting.
            Answer this for me: Is a woman/couple who seek an abortion definitively acting solely in their own self-interests? If so, is that objectionable?

            If the answer to either question is “No”, than why does a parent lamenting not having taken the action change the equation?

          • Answer this for me: Is a woman/couple who seek an abortion definitively acting solely in their own self-interests? If so, is that objectionable?

            No and no.

            I replied below. Basically, because one action is about a non-person (assuming the pro-choice position is correct). THe other action is about a person.

    • Whether it is better for the child to have ben born is, again, not the issue in wrongful birth. The question is harm to the parents. Very different question. Yes, I think some people are so disabled it would be better for them not to have been born.

      Can I imagine a case stop severe that wrongful birth lawsuit is justified? Possibly, but very rarely.

      • Rose-
        As I’ve said elsewhere, I think we are getting tripped up with the term “wrongful birth”. Is this a legal term? Or a colloquialism playing off “wrongful death”? My hunch is the latter. As I articulated below, the pursuits of such a lawsuit might be just as motivated by securing the means to care for the child as seeking to mitigate the harm done to parents.

        • No, “wrongful birth” is in fact a legal term. (Note that there also exists “wrongful life”, which is where plaintiff argues that they should have been aborted!)

      • Is it not harmful to the parents to reach the birthing process, only to discover that a doctor had withheld evidence of a child burdened with such birth defects as to condemn that child to an almost immediate death after being born? Are we imagining that those parents are fine as a result of going through a horrifying experience that could have been avoided had a doctor told the truth? Because that’s what originally tipped this conversation off: doctors being encouraged to lie to their patients if they thought that telling the truth would lead to an abortion.

        • In. cases where there is fraud, I would skipper suing for that and not wrongful birth.

          • But aren’t those just semantics? Is “wrongful birth” even a legal term?

          • BTW, this is what happens when you try to reply to a post on a phone.

        • Because that’s what originally tipped this conversation off: doctors being encouraged to lie to their patients if they thought that telling the truth would lead to an abortion.

          As I indicated in my post on that subject, there is nothing I can see that either encourages or even allows doctors to lie to prevent abortions in either of the much ballyhooed pieces of recent legislation preventing “wrongful birth” lawsuits. That they are being spun that way does not make it true.

          • Is that from a reading of the legal language itself or a reading of the recaps of the bill?

          • That is from reading the language of the bills themselves and/or the explicit statements of the legislators who introduced them pertaining to that very question. To my (admittedly inexpert) reading, neither bill allows for doctors to commit fraud.

            Burt, if you’re still following this comment thread, I would be delighted to know your thoughts on the matter.

          • The fetus becomes the doctor’s patient, too. This occurred to me out of the blue whilst skimming this topic. Would it be unethical for a doctor—or any person—to lie [or omit info] to save a life, especially a life they are already bound to protect? [The doctor-patient relationship, in this case that a pro-life doc would see the fetus as having a life and rights—a right to life—that the doctor was ethically bound to protect and preserve.]

            Simply on the level of moral reasoning without modern or professional accouterments, I don’t see how a pro-life doc could do anything else.

            [Oh, and Doc Saunders, your swooping in to give the new laws a proper reading is appreciated too. Strange how some discussions go on for awhile based on faulty premises.]

          • You’re not allowed to lie to your patients to coerce or manipulate them into a moral decision. A similarly pro-life doc on the other end of the patient’s lifetime is not permitted to lie about a brain-dead patient because he fears the family will withdraw life support. I would hope everyone would recoil from the notion that doctors should be privileged to pick and choose what information they share with their patients, particularly because they feel they should make moral judgments that supersede those of said patients.

          • Dr Saunders, you are no doubt correct that “there is nothing I can see that either encourages or even allows doctors to lie to prevent abortions” at the present time. But to rely on “the explicit statements of the legislators” is to carry a very leaky vessel indeed — it is all too common for legislation to outrun the grasp of original intent (mixed metaphors are totally the bomb!).

            Keep in mind that although fraud and negligence are now excepted, they can later be legally redefined and tailored to fit the law in ways that you may not approve. I wouldn’t rely on the good faith of those who write laws like this.

          • In the case of the Kansas bill, at least, there are explicit exemptions from protection for deceit or negligence. If there are amendments, now or in the future, that remove those exceptions then obviously that changes the question dramatically. But as of now, there are no laws of which I am aware that actually allow doctors to lie to their patients if they think it will prevent an abortion.

          • > [Oh, and Doc Saunders, your swooping in to give the
            > new laws a proper reading is appreciated too. Strange
            > how some discussions go on for awhile based on
            > faulty premises.]

            Yes, thanks for that, Doc! I was, at the time, unable to track down the verbiage in question, hence my original post was more of an inquiry than an well-founded opinion.

          • Dr. Saunders, you missed or elided the point. The fetus is now also the doctor’s patient. And as stated, I’ll stick with the plain moral reasoning first before leaving doctors to make up their own code.

            When men abandon moral reasoning and compose their own moral codes instead, bad things happen.

          • Tom, I would suggest that for people whose moral reasoning would consistently and predictably require them to corrode their professional ethics by deceiving their some number of their patients, perhaps they should choose a profession that would not put them in such a precarious position in the first place.

          • Consider Mr. Van Dyke’s “dual patient” scenario being legislated into the law of the land (bills are probably being written as we type): the fetus has its doctor, the potential mother has her doctor, and the state puts the burden of proof on the latter. And the biological clock doesn’t stop ticking while the medical/legal dispute plays out.

          • Crazy cockeyed optimist that I am, I still have enough faith in the basic decency and good sense of most of America’s citizens (and, dare I say, lawmakers?) that I don’t see laws allowing doctors to lie to their patients to coerce moral decisions coming to pass. Suffice it to say I would be horrified to be wrong, to say nothing of the utter contempt I would feel for any doctor who would actually do such a thing.

          • Your faith is better reserved for our fellow citizens rather than our lawmakers (living in Arizona I know just how crazy they can be). While I certainly don’t expect such laws to pass the constitutionality test, I also don’t expect any slowdown in the effort to make abortion access risky, illegal, and scarce.

          • How far do we push it? Can a doctor lie about the efficacy of a treatment and say that it can extend life for 10 years when it can really only do so for 1 year?

          • Forgive me, Dr. Saunders, for not ceding the moral high ground to “professional” ethics over plain moral reasoning. I don’t blame you for resisting dealing with the moral conundrum I identify here—that the doctor has accrued a second patient, the fetus, to which he has a duty— but you have not engaged this point, you have steamrolled over it, substituting the legal and “professional” ethics over the moral reality.

            Not thing personal, my dear Saunders, but if you examine your reply, all you have done is assert your moral position [none] and condemn the doctor who sees his ethical duty differently. Frankly, you are merely moralizing, not reasoning morally.

            For—and this is only if the doctor sees the fetus as endowed with a right to life, mind you—there is no moral difference between this lie [or omission] and hiding the kid from the Nazis. The child will die; the mother will only be inconvenienced. Dragging in the Nazis is Godwin’s Law of course, and by custom this means I “lose.” But the death of the child is final, and I do not apologize for violating internet ethics in this case.

            And as a medical professional, it appears you see your first duty as to your profession. That’s fine, but I have no similar respect for it, that professional ethics trump what is right and wrong. I don’t give a hang about your profession or any other if its “ethics” require it to do wrong.

            Your point is well-taken about a doctor who feels he incurs a duty of the fetus as his patient, but then again you have seized medical ethics for yourself and your interpretation, as though it’s the only possible ethics. The more I think about it, the more I see that you have seized the moral “high ground” simply by power, not moral rectitude. Your ‘profession’ has decided, ad hoc, that abortion is A-OK [and a number of other things]. But this does not mean your profession’s standards are ethical, it just means that’s what the majority of you voted. In a different day, your standards were different, and that doesn’t meant they were any more or less right or wrong. it just means that you follow the legal and cultural tides. But this is not moral reasoning, this is not ethics. It is the exercise of ideology and power.

            Again, Dr. Saunders, nothing personal. Indeed, my objections are completely formal, that your profession’s ethical standards are simply not the result of moral reasoning, and indeed suppress it.

          • One slight difference, Tom, is that you can expect that there exists a possibility you can convince someone of the moral implications of their decision when said person is an individual and lacks brownshirts and guns.

            I can see someone who is a passionate theist, for example, saying, “The Lord will inform their hearts and grant them the grace and wisdom to make the right decision”, and telling their patient of the status of the fetus, even should they accept said fetus as a patient following your premise(s).

            Granted, I can also see someone going your described route.

            However! Rather than put oneself into such a conflict between morality and ethics, I would think that it would be the responsibility of the doctor to inform *potential* patients of his/her moral reasoning. Failing to do this means the doctor has set up the patient for a huge potential breach of ethics; it’s like a lawyer standing up in court and saying, “Hell, judge, my client is guilty as sin, he butchered that woman and deserves the chair.” The system, itself, depends upon the ethics embedded in the profession to prevent *systemic* failure. It can’t prevent any individual failure, but if you can’t trust your doctor to not try to make moral decisions for you, you can’t have a doctor (or a lawyer).

            It is an ethical responsibility for a doctor to speak truth to his patient. It is not their ethical responsibility to mislead their patient. What the patient does with that information, the moral burden for such a decision falls upon the patient, yes?

          • PatC, see how quickly we shed moral reasoning for legality!

            I’m not to the point of making an argument yet, moral or otherwise, but Rose’s post did awake the thought that a doctor might incur an ethical obligation to the fetus as his patient as well. To say that the doctor’s only patient is the mother and that the fetus has not right to life that needs to be recognized [if not protected] is simply to cede the pro-choice set of premises and pre-suppositions out of the box.

            So too, then, the premises for developing the set of medical ethics.

            Jaybird is right on the other question of ethics; Thomas Aquinas for one is against lying completely. On the other hand, there are also omissions, which are are a grayer area. A doctor could conceivably omit certain info or recommendations, knowing they may lead to the fetus being destroyed.

            As with many of my reservations about these issues, what hits me most is how little we have done any moral reasoning on any of this stuff, and are content to form our “ethics” by going along with the crowd.

            https://ordinary-times.com/timkowal/2011/12/31/abortion-and-eugenics/

            And sorry for the Godwin’s, but hiding somebody from the Nazis has always been where this rubber meets the road.

          • Fwiw, Kant made an analogy similar to the hiding the Nazis. He thought one should not lie, even about the whereabouts of an innocent person, even to a person intent on killing him. There’s been a lot of controversy about those lines since.

          • Tom, what joy this conversation holds for me appears to be at low ebb. I’ll share a last few scattered thoughts, and then I think I’ll call it a day.

            You assert the existence of two patients — the mother and the fetus. You represent the physician’s obligations to the latter as superseding his obligations to the former. The right of the fetus to be born, no matter the circumstances of that birth, override the rights of the mother to know the truth about her pregnancy. I disagree. The physician’s primary, overarching obligations are to the patient who sought his care in the first place. (Forgive the chauvinism of that “his.” For some reason I have a very hard time imagining a woman physician lying to a pregnant patient. Clearly a lacuna in my thinking.) The expectant mother came to him asking for care, and it is to her that his primary obligations attach.

            Further, I believe that any line of moral reasoning that allows for, nay relies upon deception to accomplish its ends is inherently corrupt. That is certainly true when the relationship involved (physician-patient) relies on trust to overcome the tremendous power and information differential between the two people involved.

            Finally, just a thought — if I knew that a doctor in my community would lie to his patients to effect an outcome to his liking but not necessarily to theirs, I would never want my patients to see him. I would never refer to him, and would advise my patients to go elsewhere for care. I would find comfort in seeing his office close as soon as word got out to prospective patients “Doctor Perkins will lie to you,” and every woman of sound mind went elsewhere for care. And I would consider a physician who would tell a hopeful but anxious expectant mother that everything was fine, knowing full well that it was not, and would allow her the emotional devastation of learning otherwise at the end of her labor when it would have been prevented or mitigated by honesty… well, I would consider that physician no hero, no matter the rectitude of his own thinking. I would consider him a monster.

          • There are a myriad of circumstances where a doctor lying (even through ommission) to one patient can save or improve the life or lives of another or seveal other patients.

            Would it be moral for a doctor to overcharge a rich patient to cover the treatment of his poor patient?
            Would it be moral to withhold information about a potentially life-saving treatment to a patient who has the perfect set of organ for a handful of dying folks?

            This reminds me of the scenario with the fat man and the runaway train. There is no easy answer, but I find it difficult to support the position wherein one should act in a willfully immoral way to prevent a potentially immoral or undesirable act they are not directly party to. The mother has actively sought a relationship with the doctor in a way the fetus has not, which certainly impacts (bur does necessarily wholly eliminate) his moral obligations to it.

            There is another factor as well, in that the parents might do a lot of different things with that information other than choose to abort, which might have very beneficial impacts on the child but which would not happen if the parents remain deliberately mis/uninformed (or their happening may be delayed by several months until the parents do come to know). How is the doctor to know which parents will use the information in a potentially immoral way and who will not?

          • Would it be moral for a doctor to overcharge a rich patient to cover the treatment of his poor patient?

            No. It would be moral for the doctor to reduce or waive his fee for the poor patient, not to overcharge the rich one. The doctor is obligated to pay for his own charity, not to subsidize it with the wealth of another.

            Would it be moral to withhold information about a potentially life-saving treatment to a patient who has the perfect set of organ for a handful of dying folks?

            No. Simply no.

            (I suspect you’re not suggesting otherwise, BSK, but I figured I’d answer what were probably just rhetorical questions anyway.)

          • Russ-
            I would agree. While I am tempted by the utilitarian possibilities of such an approach, I can not rectify it as moral.

          • Two quick observations about this particular thread:

            1. Semantics plays an unnecessarily large role that cannot support the weight it attempts to lift. “Moral behavior” and “professional ethics” are indeed two separate phrases that use different words, but they are not necessarily separate gradations.

            I suspect, Tom, that you are confusing “professional ethics” with “professional etiquette.” As I read Russell’s responses, I do not really get a sense that his position comes from a place of “but it’s not company policy!” It is clearly a moral stance. Personally, when I tell people that ask if I am willing to do X (lie to underwriters for better rates, not report malfeasance to their Board, etc.) I always note “professional ethics,” but these decisions are and always will be moral ones. Professional ethics isn’t a phrase that’s meant to differentiate from morals; it’s merely a phrase that’s meant to note that in particular professions there are actual fiduciary responsibilities to ensure that moral behavior is practiced.

            2. I am reading from the bottom up and doing so rather quickly, and so I’m not sure who initially brought in the Nazi comparison that seems to have caught some amount of fire, but I will say this:

            If your analogy to prove your position requires casting parents looking to make ensure the good health of their children (unborn or not) as well as their own as Nazi’s looking to spread oppression, you really need to go back and think of a better argument. This is a pretty classic case of an argument that, trying to be clever, missed the actual target by a wiiiiiide margin.

          • Tod, Tom’s right, the hiding from the Nazis is a version of a classic problem (as Rose notes, one discussed by Kant even) in the ethics of lying. It’s a problem that can be done without bringing Nazis into it, of course, and given that Holocaust rhetoric is not uncommon among pro-lifers when discussing abortion, it perhaps shouldn’t be brought into it, but I don’t think Tom or anyone else meant it as an analogy mapping onto the actors in the doctor-mother scenario.

  2. Bear in mind that arbitration routinely turns in resolutions with significantly lower verdicts, so an inevitable result of the solution would be reduced compensation for such verdicts.

    Given your own position on the issue, I realize that this may not seem like a significant trade-off to you.

  3. Some families cannot afford to meet the needs of children with special needs. Children are expensive. Children with special needs are often vastly more expensive. A family might have positioned themselves to care for a child without special needs but would be unable to appropriately provide for a child with special needs. What is wrong for them to say, “Had we known that we were going to bring a child into the world that we could not provide for, we would not have done so?” And what is wrong for them to use this position to seek monies that will allow them to provide for a child they would not have had in the first place had they know what it would have cost?
    If it is okay for a woman/couple to seek an abortion for an unplanned pregnancy that they are not prepared to support, why is it wrong for a woman/couple to acknowledge that they would have sought an abortion for a planned pregnancy that ultimately would have cost them far more than they planned for?

      • Well, yes, but we don’t have that.

        You are framing this issue in one way and one way only: parents who seek restitution for children born with special needs who they would have aborted had they known about the special needs are doing so for self-serving reasons. I think that is entirely too narrow a view.

  4. Let me clarify a few things. I suspect that my bar for a life worth living is lower than most of yours. That’s neither here nor there. A wrongful birth suit asserts that the harm was done to the parent.

    As I’ve written, I have mixed feelings about the morality of abortion in the case of prenatal detection of chromosomal abnormalities. I *definitely* think it should be legal! Are people doing it for their own convenience? Depends on the chromosomal issue, and even if they are doing it for their own convenience, I do’t think that makes it unwarranted. I think caregivers should take their own convenience into account (see last post, where I annoyed people in the other direction).

    It is a very different thing to abort a person who des not yet exist (I am assuming the pro-choice position is correct here) than it is to assert about a living child that your life would have been better had he not been born. One action is about a non-person, one action is about a person.

    I am well aware that an unexpectedly disabled child is huge expense that almost no one has prepared for. In fact, almost no family can afford it, even upper-middle class ones. I’m saying it is a huge moral price to pay to get that money.

    Again, can I imagine a life so absolutely horrific that merely to witness it was clearly a harm to the parents and they are warranted in asserting this? Yes. The Levys’ child (the most recent case) had Down syndrome. Another recent case had a kid with perfect cognition, but no arms and one leg. I don’t think this is warranted.

    I note that Caplan agrees with me that asking parents to assert that they never would have birthed their own child is morally problematic. Where he errs, I think, is thinking that he has a solution.

  5. There is never going to be a way to file a wrongful-birth lawsuit that can’t be interpreted as “we think our child should not exist”.

    That said, I don’t find it morally compromising for parents to say “our child has a particular condition, and we do not have the resources to mitigate that condition in a way that gives our child a fulfilling life, and had we known about this condition we would not have had this child because we wouldn’t want to bring a child into the world that we could not provide for. We love the child and wish to provide it a fulfilling life, and so we want the service provider who failed to give us the information about the condition to take some responsibility for that failure.”

  6. Is it possible that wrongful birth suits are/should be the way f the future for financial reasons?

    What I mean is, there are a lot of things that individuals can’t cope with financially we as a society have decided to fund by creating a “torte which is paid for by insurance which is paid for by premiums which aggregate the costs to everyone in the system” model. In fact, in a lot of cases we as a society prefer this method to government oversight and funding. Could we view wrongful birth suits similarly?

    • So then we create a financial incentive for people to say they would have aborted the child.

      I propose instead that we systematize public funding. In some places and cases it is perfectly adequate. I have good private insurance, a state that has a good medical assistance waiver program for the severely disabled, and a county where the school system pays for plentiful and high quality early intervention and loans me medical equipment like therapy balls and standers and walkers and chairs. Despite several surgeries, countless therapies, and innumerable doctor visits, a wheelchair that cost over $10000, leg braces that cost $2000, I paid only $6000 last year in out-of-pocket medical expenses. And that was largely stuff I didn’t really have to (consulting a private PT not on my insurance, buying a treadmill set-up). I could have easily paid less than $1000.

      If this were standard, no one would need to sue to cover extraordinary expenses.

      • “So then we create a financial incentive for people to say they would have aborted the child.”

        I was not actually arguing that it would be a good idea; I think I can see it organically becoming the default, though.

        “I propose instead that we systematize public funding. ”

        I am becoming more cynical about public funding. One of the disadvantages to the current system is that it encourages people to forget that people with DDs exist, and consequently any money designated is always a pool pup for grab for other projects. Unless there is a successful effort to promote a person-centered movement with community integration, public money will always be both insufficient and at risk.

        • Doesn’t tort law vary from state to state and verdicts from judge to judge? Sounds like a crap shoot to me.

        • So person-centered community integration plus public funding? Because I don’t see how you can take away public funding.

          • Yes, exactly. My point being that until a particular segment of our population is visible in the community and not hidden away and all out-ot-sight-out-of-mind, public funding will never be enough of a priority. I am a firm believer that community integration has to occur in order to establish stable, adequate funding.

  7. So Rose, is your problem with these suits that it causes people to say things about how they feel about their children that they don’t in fact feel, or that it causes them to say that they feel that way when in fact they do, but you don’t think they should say it out loud, or that they feel this feel this way at all, when you think they should not?

    These people may not think that saying this at this time about their children will have any negative effect on the children. In many cases, the disabilities the children have may mean they can be quite certain that the children will never understand what these suits mean. In other cases, they may feel perfectly comfortable with the meaning of what they are saying about their children. Certainly there is not interpretation of these statements that supports an interpretation of them as saying that they do not love their children (as Density Duck says). Our interpretation of these statements may be very different from that of the people filing the suits. You take it upon yourself to audit all of this in for other families’ individual situations. Why? On whose behalf? I think there is an element of busybodying going on here, to be frank about it.

    I guess my question is, who are you to say any of this about what people in these circumstances should say or do? I realize, you are better-placed than anyone who doesn’t have a child with a disability to make these judgements. But that still does not mean you are in a position to do so. It seems to me that the one piece of knowledge that you should take from your situation and feel confident applying to others’ is the certain knowledge that it is a challenging situation. But from there, why shouldn’t there be significant variation among responses? Why is a quietist tolerance not the requisite approach to considering these responses? Certainly you never, ever have to file a wrongful birth suit on your behalf if you don’t want to.

    • Obviously, take this with a grain of salt. As I say, you are much closer than I am to being in a position to make this judgement, so perhaps my own strong resistance to even considering judging them from my position is overtaking my estimation of how well-placed you are to do so.

    • I have a problem with public assertion, not private. I have no problem with what anyone feels. The kid may never know, but siblings will.

      The only information that I am privy to that you are not is a) an intimate familiarity with the challenges they face, and b) more information about what people with I/DD are like. My husband has access to all that same information, and disagrees with me as you all do.

      The arguable point that I’m making (and I fully admit it is arguable) is in what a parent’s obligation to her child consists.

      As for busybodying, I think it’s part of ethical discussions.

      • Although it’s worth adding that I have no doubt that I would have agreed with all of you before my son was born. The experience has made me think that most people misunderstand the nature of the challenges that face families of kids with disabilities (including me before I had him). It has also drastically changed my beliefs about what constitutes quality of life. It has also made me think more closely about the relationship between parent and child, and what should when those interests are opposed – which they are sometimes with typical kid’s, but more so with disabled.

        • I think there is a very strong case to be made that the siblings will or certainly could benefit more by not having their family’s resources diverted into extremely expensive, necessary care for a sibling requiring such and will be able to understand the implications of the statements made in the lawsuit if explained carefully and with love by their parents. Ultimately, I think you are using a blunt moral instrument here. I think parents can make these decisions an implement them in ways that make what you suggest are necessary effects very contingent on good parenting skills. And obviously, we would both endorse the utilization of good parenting skills and decisions. Your view here is that the decision to pursue a wrongful birth suit is categorically excluded from that category, and I think there just isn’t any basis for. This could be a very supportable course of action depending on the circumstances, which means that any general judgement of those employing it (IMO) is not supportable.

          I am aware that the point of your post is to propose an alternative. More alternatives are always welcome, however, so the question really is just whether a general condemnation of pursuit of these suits is justified. Moreover, this avenue of resolution actually exists in contrast to the options (or simply benefots) proposed and/or wished for by you and Dr. Caplan. After all, the lack of those options and benefits are very much part of what we mean when we say that this situation is a great challenge to any family who has to face it. That’s why, for the moment, it remains (IMO) quite unfairly judgmental for someone like me to condemn a family for pursuing the options that are available to it.

          • (…or, more to the point, contingent on the lack of good, or, to be fair, exceptionally good, parenting skills). (Again, with no personal experience to base this on, to me it seems that successfully [whatever that means] raising a family with multiple children of which some but not all have serious disabilities likely in almost all cases makes imperative having or developing exceptional parenting skills…)

          • Yes, balancing interests of typical kids and disabled kids can be a little like plate-spinning. Interestingly, studies show that when there’s a child with a severe disability, the more kids you have (up to four), the better the outcomes for disabled child, typical siblings, and parents. There’s a cause /correlation question here…I wonder which it is. Or maybe it’s a combination.

            There are other factors that predict how siblings turn out.

  8. If parents come to the conclusion that a child they have is destroying their lives, they can put the child up for adoption. It seems to me that the only reason to go the wrongful birth route is to punish the mistake of the medical professional. (Or, I could be less charitable and say the parents are using the child with a disability as a cash cow, but I’d rather stick to the completely charitable suppositions.) There is value in this if severe negligence was a factor, and I don’t think the arbitration route gets the same thing, which is public retribution against the health professional.

    So, parents of a child over whom a wrongful birth claim is filed probably truly do love that child, and want to raise the child, else they would have put the child up for adoption. In fact, it is possible fierce love for the child combined with the agony of seeing all of that child’s difficulties that strengthens the desire for retribution.

    The law allows suits on the basis of emotional damage. Why couldn’t that be the legal framework, instead of requiring the supposition that the mother would have aborted the child had she known what she didn’t know?

    • The emotional damage only exists relative to a course of events in which the woman had the information she wanted to help her make a decision whether to abort the pregnancy, where she attests she would have had the abortion had she had the information, does it not?

      • As others agree with me, I think there’s no clear way to sue without asserting explicitly or implicitly that you would have had an abortion.

        Allow me to say here, that while my language in the OP was a bit strong, I in no way think this is a moral offense on a par with, say, abandoning your disabled child. It’s like 546 notches below it on a moral hierarchy. And allow me to say, too, how disgusted I am that some people who agree that the act is immoral are calling the parents things like “the worst parents in America.” Because there are, after all, actual abusers in America.

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