Why Prenatal Screening for Gender and for Disabilities are Not the Same

When writing about reproductive ethics, I’m not in the business of telling people what to do. Occasionally, however, I offer my opinion on particular uses of reproductive technology. One practice that I find unacceptable is gender selection of embryos and fetuses for non-medical reasons. (A medical reason for gender selection would be if a family had a history of a serious sex-linked genetic disorder.)

In the U.S. and Canada, prenatal gender selection is driven partly by immigrants from patriarchal cultures, where women are often under pressure to produce male heirs. In other cases, gender selection is driven by a mother’s desire for the daughter she has always dreamed of having; she envisions a uniquely close mother-daughter bond, buying pretty clothes, and sharing interests.

In the Canadian Medical Association Journal, editor Rajendra Kale recently recommended that gender-identification ultrasounds be postponed until 30 weeks gestation to prevent parents from aborting a fetus of the unwanted gender. In response to that article, law professor Roxanne Mykitiuk wrote an op ed for the Globe and Mail asking why we should stop at trying to prevent abortions for gender. She writes:

I, as both a woman and a mother of a child with an ultrasound detectable anomaly, believe that Dr. Kale’s arguments about discrimination could be extended to fetal characteristics other than the presence of female and male genitalia. In a society committed to protecting the equality rights of women and persons with disabilities, we should be just as concerned about the use of ultrasound to identify and eliminate fetuses on the basis of disability as we are about sex.

I have many concerns about why and how preimplantation and prenatal screening for disabilities occurs—concerns about the pressures parents face to produce “successful” children; the information parents get (or don’t get) from medical professionals before and after screening; and potential cultural changes in a society where it becomes both possible and expected for parents to ensure that they don’t have sick babies. I also grieve the use of technology to screen for relatively minor and/or treatable anomalies (missing digits, cleft palate) and non-disease traits (such as hair or eye color, as well as gender).

However, I don’t share Mykitiuk’s belief that screening for gender and screening for genetic anomalies are two sides of the same coin. I do not support use of prenatal screening for gender selection. I do, however, support parents’ right to screen for medical conditions that will seriously affect their child’s health, cause pain, and require significant medical interventions.

Unlike Mykitiuk and some other advocates for those with disabilities, I don’t assume that screening for disabilities inherently devalues people living with those disabilities. I have discussed this idea, along with a paper by medical ethicist Janet Malek that discredits the logic behind this assumption, more extensively on my former blog.

I also take issue with other assumptions that Mykitiuk makes about disabilities. By equating prenatal selection for disabilities with selection for gender, Mykitiuk implies that our perception of people with disabilities is entirely a social construct, just as how we value the genders is a social construct.

Cultural and individual preferences for boys or girls are based on socially constructed, culturally sanctioned notions of who should provide for families, which of life’s many tasks are most valuable, how children of each gender should dress, play, and relate to others, etc. Fundamentally, however, such judgments are false; any notion that boys or girls are more desirable is based solely on human prejudice, not inherent qualities of boys or girls. Social mores can change so that children don’t grow up being told what they can and can’t do based on their gender.

Similarly, some people see disabilities as socially constructed. They argue that disabilities are disabling not because of inherent qualities, but because of how people and cultures treat those who are different. They argue that if we change our public and private spaces, our schools and workplaces and recreational facilities, our attitudes and assumptions, to accommodate and recognize people with disabilities as capable and valuable, then people will no longer be “disabled” by a diagnosis.

I absolutely agree that such changes would improve the lives of millions of people with disabilities, not to mention enrich and improve their communities. But I do not perceive disabilities as fundamentally value-neutral, the way that gender is fundamentally value-neutral. There are many socially constructed limitations on people with disabilities that should rightly be torn down. But many disabilities also have inherent qualities—pain, limitations, the disabling of essential physical and psychological functions—that cannot be fixed by making our society more accepting and accommodating.

It may very well be that certain diagnoses that we currently perceive as disabling really aren’t disabling once we remove social and cultural barriers and prejudices. But my disability, osteogenesis imperfecta (OI), is not a social construct. It is a painful, debilitating condition.

My gut tells me that bones breaking when a child sits down on the bathroom floor, as once happened to me; or lungs filling up with mucus when they shouldn’t, as in cystic fibrosis; or muscles wasting away, as in muscular dystrophy; or aortas bursting open with no warning, as in Marfan syndrome, are fundamentally bad things. Is “evil” too strong a word? I’m not sure. They are somehow a manifestation of the separation between what God intends and desires for humankind on one hand, and on the other hand what humankind actually lives with, day after heartbreaking day. Arguing that these conditions are value-neutral manifestations of human diversity, akin to gender, feels inadequate.

Ultimately, my husband and I decided to have the babies we would have, without using preimplantation genetic diagnosis, even with the chance they would inherit my OI gene. We did use prenatal screening (amniocentesis) for one reason only: So we would know what medical issues we were dealing with when our babies arrived.

But I have talked to women who decided after prenatal screening to terminate pregnancies with babies who would experience significant pain, disability, and illness. While I might not have made the same decision, I trust these women when they say they did it not because they see babies with genetic anomalies as less valuable, but to spare their babies terrible suffering.

I don’t think such decisions are at all the same as decisions to abort a baby girl because her father’s family wants a son to carry on the family name, or to abort a baby boy because a mother says that her sons haven’t completely fulfilled her desires as a parent. Arguing that they are the same belittles the suffering that people with many types of disabilities experience—not because of how other people treat or perceive us (although that can cause a different kind of pain), but because these disabilities cause real damage to body, mind, and spirit.

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • http://www.savingdowns.com Mike Sullivan

    “Arguing that they are the same belittles the suffering that people with many types of disabilities experience—not because of how other people treat or perceive us (although that can cause a different kind of pain), but because these disabilities cause real damage to body, mind, and spirit.”

    Wow, just wow, at Savingdowns we are trying to save people with Down syndrome from disability selective abortion and here we have a “Christian” using the usual pro-eugenic arguments about suffering and damage to body, mind and spirit.

    We are all children of God, from our inception into eternity. Differances come from prejudices, and prejudice is the child of ignorance. All children are children of God, there aren’t exceptions for aborting the so-called disabled.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I’m not arguing that people SHOULD terminate pregnancies with children with disabilities at all. Only that the comparison between gender selection and selection for disability is a false one, and that the arguments given in Mykitiuk’s article for why they are the same don’t hold water. You say “Differences come from prejudices…” I’m arguing that with many genetic anomalies, the differences are not merely from prejudices. In my case, the differences come from the fact that my bones break for no good reason.

      And Down syndrome is one of several genetic anomalies I was thinking of when I wrote that, “It may very well be that certain diagnoses that we currently perceive as disabling really aren’t disabling once we remove social and cultural barriers and prejudices.” It’s a great example of how, when kids are given resources and support (rather than being sent to institutions and written off as hopeless), they are not nearly as inherently “disabled” as people once assumed.

      I appreciate that you come at this topic from a different perspective. But I also think your response is a terrific example of why it is so difficult, nearly impossible, to have useful conversations around these issues. You took a relatively limited point I was making about comparing gender selection and disability, and widened it to call me a eugenicist. If we can’t have conversations about these issues, particularly between people who come down differently on pro-choice vs. pro-life, then Christians have no hope of engaging the culture in important concerns about human worth (and other concerns) raised by reproductive technologies.

      I’ll say again what I always say: My agenda is not to tell people what they should or shouldn’t do, although I’ll occasionally share an opinion about certain specific practices (like gender selection). My agenda is to raise questions and encourage robust, informed, effective conversation that might actually influence hearts and minds and equip people to make faithful, thoughtful decisions when they walk into the fertility clinic or prenatal screening session. People generally don’t respond well to being told what to think (not to mention called names), which is why I won’t do it.

  • Brett Campbell

    Because someone may live with pain, or possibility of pain, does that make them less worthy of life? Isn’t your evaluation of another’s possibility of pain a manifestation of your personal “social construct?”

    The real issue is not how people (society) see and treat those with disabilities – that may be useful but ultimately unimportant – it is how people with disabilities see and treat themselves. They see their lives as having joy and meaning, regardless of how you view their pain, and they choose life (their own life), over death. To take that choice away from a person before they are born is no different than to take it away after birth. The crux is not how you feel or think personally, or how you believe others may feel and think, but how a disabled person feels and thinks about himself. Why is an unborn female (or male) child any less or more worthy than a Down Syndrome child? Eugenics is eugenics, regardless of determining factor.

    Life is in the eye of the beholder, and we behold all life as precious, gifted, worthy, and of great value. It is hubristic folly to assume that we know better than the unborn child if they would prefer life or death.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Again, you’ve missed the point. I’m not making an argument about who is and is not worthy of life. I’m making observations about motivation, and saying that the motivation to help your child avoid great suffering is not the same as wanting a baby boy or girl for reasons that have everything to do with cultural prejudices. There are certainly cultural prejudices involved in screening decisions concerning disabilities, and we should fight those prejudices. But that’s not all that’s involved. Which was my point.

      I have a disability and am raising a child with a disability. You don’t need to convince me that we are worthy of life or that we see our lives as valuable.

  • http://www.savingdowns.com Mike Sullivan

    The differences and motivations you speak off are of the mind of the beholder and have nothing to do with the humanity of the unborn child. You either hold all life as sacred or you don’t, the rest is just excuses.

    Disability selective abortion is eugenics and it is always disturbing to see people of any faith try and justify it.

    The comparisons between sex selective and disability selective abortion are valid if you value all life as equal – they both involve killing an innocent human being. Motivation has nothing to do with it.

    • Thomas R

      In fairness if I had a child I think might want to know if it had OI or if it was normal. For me, from my presumably different perspective, both things would causes. A “normal child”, particularly if it’s male, would go through many things that I just can’t relate to. I’m not saying I’d favor a future wife aborting a normal-child for being male, that’s not what I mean at all. Still I could see wanting to prepare for “biped” things, issues, concerns, etc. Also I admit I’d have concerns a “normal child”, if rowdy, could injure me. I don’t fracture easily anymore, but still part of why I never had kids is that concern and how to discipline normal/non-OI children. Maybe knowing it’s not OI before birth would give me time to contact OI parents with non-OI children and learn from them.

      Not that I’m saying it being an OI child would be easier. In my first five years of life I was fracturing all the time. I think they actually had to have pillows or sandbags around my skull to maintain its shape. My parents had four kids before me and the energy they had to handle all that is amazing. I don’t know that I’d have such energy. Maybe I’d panic.

      Also, as Pro-Life/Anti-Choice as I am, I have to concede “reproductive issues” are different for males and females with OI. Being pregnant with my condition I’m reasonably certain is way riskier than simply having procreative sex. Although that relates more to getting pregnant to start with rather than pre-natal tests.

      • Thomas R

        I meant this to be a response to your post below, but maybe it works here okay.

  • Tracy Phillips

    I agree that being the “wrong gender” is different than being born with a disability. But, I would go a step further and say, I think alot of what us parents of children with DS are trying to say is that if someone is going to have a child, that child should be loved and wanted, no matter if he starts out “biologically perfect” and ends up being a complete failure and menace to society, or if he is born with a chromosomal abnormaility. Parenting is about something deeper, an acceptance and love that has nothing to do with “suffering”, IQs, appearances, and trying to have control over what another life will be. It is their life and it should be more important that they are able to live that life than how their imperfections might hinder you or greater society. Everything is relative, there are people who started out as “perfect babies” who amount to absolutely nothing, are a drain to society, and cause suffering of all kinds. Beauty and Love are in the eye of the beholder, and as a parent it exists for and because of your child, no matter what challenges, medical, psychological, physical, etc. they may have in their lifetimes. To think as a parent you should be able to choose the child you want is just silly, ethically dubious, and is a red flag that you are really not parent material. Ellen, can you honestly say you wish your parents had aborted you because of your OI? I am sure glad they didn’t, you are obviously an intelligent woman who contributes much to the world. The suffering you had to endure is yours alone, but to think that parents should intervene in the name of prevention of suffering is questionable. I am pro-choice, the choice is do you want to be a parent, or not? If a mother wants a baby, just not “THAT” one, things are getting pretty terrible here on planet earth. Life sometimes is sad and unfair, and some little babies live short painful lives, but I challenge you to find a good parent anywhere who wishes their child were never born.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      “Parenting is about something deeper, an acceptance and love that has nothing to do with “suffering”, IQs, appearances, and trying to have control over what another life will be. It is their life and it should be more important that they are able to live that life than how their imperfections might hinder you or greater society.” — YES yes yes. One thing that I and many others engaged in these conversations worry about is that the increasing use and availability of reproductive technologies is undermining the most vital quality of good parents: unconditional love and acceptance of the children we get.

      In an ideal world, no one would get pregnant without thinking long and hard about whether they want a baby, if they are able to care for a baby, and if they can accept whatever child they end up with. And no one who wants a baby and is ready and capable of caring for that child unconditionally would experience infertility. But we don’t live in an ideal world. I’m just trying to respond to the world as it is, rather than preaching that it should be something it isn’t.

      And of course I don’t *wish* I was aborted! I dont *wish* anyone was aborted!

      In your first sentence you say you agree with the idea that screening for disability and for gender are not the same. That was my point, short and sweet. That, and only that.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        Sorry, I misphrased. When you said that being the “wrong gender” and having a disability are not the same…that’s the point I was getting at.

  • http://www.savingdowns.com Mike Sullivan

    Those are good points Tracy. The other thing Ellen has done here is express a view that killing an unborn child for gender reasons is not the moral equivalent of the same act for disability reasons. This discriminates against the disabled and implies that their lives are of less worth (or morally equivalent). Very dangerous territory and disappointing, though not uncommon, from a Christian. And, who is playing God?

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Ah, but Mike, I wasn’t making arguments about which decision has greater moral weight at all. You need to re-read. I was making a very straightforward and limited comment about this author’s argument that 1) terminating for disability devalues people with disabilities just as terminating for gender devalues people of the unwanted gender, and that 2) disability is a fundamentally value-neutral social construct; that is, that people’s evaluation of disability as undesirable is based *solely* on their unjustifiable (we might say “sinful”) prejudices against certain types of people that they do not value, rather than on inherent qualities of disability. I value people with disabilities just as much as any other person, but I don’t value the disabilities themselves because of their capacity to cause great pain and suffering.

      I take it you are pro-life and do not condone abortion under any circumstances—a position that I respect though I do not share it. I think that is the fundamental reason that my arguments don’t hold water for you. That fundamental difference means that nothing I say to explain what I meant in this piece will be acceptable to you. So be it. But I’ve really tried to explain where you’re reading things into what I’ve said that aren’t there.

      • Miriam

        “I take it you are pro-life and do not condone abortion under any circumstances—a position that I respect though I do not share it.”

        Well, I don’t respect that position at all. In fact, what that says is that the second a woman has a fertilized egg inside her, her worth as a human being has shrunk to the size of her uterus. Suddenly that “person” has more of a right to life than the woman carrying the fertilized egg. In essence, all women stop being human beings entitled to their very own bodies at that moment.

        While I have my own opinions about when or if I’d ever have an abortion based on my own moral bearings on the universe, it still comes down to the fact that my body is MINE and everyone else’s bodies are THEIRS. I can’t respect anyone who ever says that it’s OK to control what someone else does with their bodies in such a fundamental way as being pregnant and giving birth.

        We don’t force people to donate organs to keep other people alive, why is OK to say that women should be forced to use their bodies to keep fertilized eggs “alive”?

        OH! I remember now, because in reality “pro-life” people don’t believe that women are more important than their ability to carry babies to term and give birth. Maybe I’ll run out and get a hysterectomy so I can be a full-fledged human being!

  • http://www.savingdowns.com Mike Sullivan

    Your statement that you don’t perceive disabilities as being value neutral is self explanatory Ellen. That is why the disability sector is discrimated against, others don’t see them as equal human beings. And that is why genetic screening is being used to stop them being born. It is fundamentally wrong, but many defend it. Eugenic is alive and well.

  • Jerry Iamurri

    In our Bible study last night, we talked about this blog post and two of our members are medical doctors at the University of Pennsylvania and U of P’s Children’s Hospital of Philadelphia. They happened to mention that they work with a world class OI specialist who is working on some cutting edge treatments for the condition and, if you are near Philadelphia and would be interested, they would be pleased to make an introduction.
    To Miriam: The essence of Christianity is sacrifice. God sacrificing himself for us and us sacrificing ourselves for one another. Admittedly, we fail to sacrifice for one another all the time. But, the calling is clear. Marriage and childbearing are opportunities for us to engage in Gospel re-enactment. I am opposed to abortion on those grounds.
    To everyone: If genetic abnormalities are grounds for abortion where should we draw the line? What about children born into a painful life of poverty? Is their life less valuable? What about faith that God will heal? What about faith that God will use genetic abnormalities to advance his kingdom by growing the hearts of parents, the child and society to be more Christ-like and sacrificial?

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I greatly appreciate the tone of your comment Jerry. I’m guessing you don’t agree with what I’ve proposed here but you’ve managed to participate in a really lovely and non-combative way. A blogger’s dream!

      Thanks for the offer to refer to the folks in Philly, but I and my daughter are under the care of some top-notch folks who are also up on the latest OI treatments. I used to work for the OI Foundation, which fortunately has given me a front-row seat to developments and also allowed me to connect with top people. But thank you.

      Your final questions are good ones, and difficult. All I will say is that I don’t think the questions around disability, and parental desire to avoid having a child who suffers greatly, are simple or black and white. I hope you’ll read my book to understand more of why I say that. I’ll even send you a copy if you email me with an address (5dollars [at] comcast [net]…a way for me to thank you for entering a contentious discussion with graciousness.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        Also, forgot to say to you and the other commenters here…An online correspondent of mine is publishing a series of commentaries on my book, and in her latest she does a great job (better than I could do) of looking at the challenges facing both liberal democracies and the church in dealing with reproductive issues that require us to both constrain choice and be present to those who are suffering. I’m going to link to it on Monday, but in the meantime, I commend it to you: http://signonthewindow.wordpress.com/2012/01/25/no-easy-choice-narrative-ethics/

  • Thomas R

    “osteogenesis imperfecta (OI), is not a social construct. It is a painful, debilitating condition.”

    I agree it’s not a social construct. It places real limitations on me that are not about society.

    Still I can’t deny that, from what I’ve read of you, I think you view it in a way I certainly don’t view my OI. But that doesn’t seem to be because mine is less severe. I’ve had over 200 fractures in my life. Breaking a bone because I sneezed? Check. Breaking a bone for no apparent reason while watching TV? Check. Going into respiratory failure while being in a cast? Check. Maybe double or triple-check. Although that happened only once in adulthood.

    On the other hand maybe it is because mine became less severe. Almost all my bone fractures, except 2-3, occurred before I was 14. I am not in pain very often. I go to the doctor about as much as my siblings. The only problem with the “I feel different because I stopped fracturing” is even when I was still fracturing I was happy and didn’t think of myself as really “disabled.” Although I do remember thinking of being “normal” a bit when I was a kid, I don’t know that that was ever how I normally felt. I’ve almost never felt that way as an adult.

    I don’t know what makes people different like this. I’ve heard of OIs who see it as a “painful debilitating condition” as you seem to. I’ve also seen several like me who like having this kind of body. I’m much more flexible than ordinary people, I don’t have to try to live “a normal life”, etc. I frankly love it to a large extent.

    • Thomas R

      Reading above I should maybe add I don’t think you’re saying “life isn’t worth living if you’re OI.” I know that’s not what you’re saying. Although I do think maybe you’re saying “Life is worth living despite having OI”, which is perfectly sensible for most people to say. I do admit for a fellow OI to say, if that’s what you mean, did take me a bit aback when I first read something by you.

      As I mentioned I do know OIs who feel that way, if I’m accurate on how you feel, but it’s not something I can relate to or even feel totally comfortable toward. Although I’m pretty laissez-faire on it. If somehow it could be magically cured I’d have no problem with people taking the cure. I however would not be one of those people or entirely relate to them. This is who I am, it’s who I’ve always been. Maybe it is limiting in many ways, but I like that or accept it or whatever.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        Hi Thomas. I think you’ve made some good observations here. I don’t think our different responses to having OI are related to severity. I probably actually have a less severe case than you do (about 3 dozen fractures altogether) and also stopped fracturing years ago. Although I’ve had more difficulty in recent years with chronic pain and arthritis than it sounds like you have.

        You’re about 90% right when you observe that I’m saying, “Life is worth living despite having OI.” I say 90 percent because I really do value some of the “benefits” of having OI, from minor things (my daughter and I love to do cool double-jointed “finger tricks,” and our extreme flexibility is, as you note, a bonus) to major (I know without a doubt that our cultural insistence on the importance of strong, tall, thin, perfect bodies is nonsense).

        I think people in our culture (and Christians in particular) often do a really awful job of responding to people’s suffering. One of those awful responses is when people gloss over the suffering of disabilities and illness to go straight to the benefits, focuses solely the meaning that people can find in their experience of disability and illness and discounting any expression of grief and suffering as superficial and misguided. So I tend to focus on being really honest about the reality of suffering that I and others (with OI and lots of other conditions) have experienced.

        It’s vital that we honor and accept each others’ experience with disability, illness, and disease. I’m not going to tell you that your experience of OI isn’t valid because you don’t see the negatives the way I do. Likewise, I get upset when people say that, by being honest about how I and my daughter have suffered (and by exploring PGD because I wanted to spare additional children from the same suffering), I’m devaluing people with OI/disabilities, or failing to see the positives that can come out of living with a condition like this. I appreciate that you are not doing that.

  • Diane Belcher

    “But I have talked to women who decided after prenatal screening to terminate pregnancies with babies who would experience significant pain, disability, and illness. While I might not have made the same decision, I trust these women when they say they did it not because they see babies with genetic anomalies as less valuable, but to spare their babies terrible suffering.”

    Ellen, I disagree with this statement and I do so from not only my personal experience but also that shared by every other mother who has her baby diagnosed with a Neural Tube Defect like Spina Bifida. Some months ago I responded to a blog by Richard Boock – titled Defending your right to an opinion In the blog he was discussing eugenics and Down Syndrome. The situation faced by families affected by a DS or SB diagnosis are very similar, so here is my response to your statement above.

    Families choose to terminate pregnancies because they are scared by the advice given by the specialists they see ie: your baby will experience “terrible suffering”, specialists who have no experience with the lived reality of the medical condition they have diagnosed but continue to base their advice on textbook learning that is 50 years out of date. You can read my story on http://alranz.wordpress.com/2011/12/10/choice-and-antenatal-screening/ Parents get no opportunity to talk to other families, no reading material, no advice from Paediatricians experienced with caring for children with medical conditions, no access to support groups. You have to fight for this at a time when you are emotionally fragile and shattered when it should be provided as a matter of course and good medical care. Oh, but rather than provide you with any of this, we can get you in for an abortion next week and you have 5 minutes to decide.

    This issue of disability directed terminations is huge and growing worldwide. You only have to do some research into the latest version which is the most serious instance of disability discrimination and appears under the Groningen Protocol developed in the Netherlands to regulate and justify hastening the death of newborns with severe impairments. Doctors are directed to discriminate their counselling based on a babies disability. Parents are counselled that their babies’ impairments will result in a life not worth living and that they should die. This is often not evidence based but the result of implicit stereotyping about the lives of people with disabilities. This practice is has resulted in the death of more than 20 Dutch babies born with Spina Bifida. The Groningen Protocol has been accepted as a standard of practice by the Dutch Paediatrics Association. But it is not only Dutch children with Spina Bifida who are at risk for dying through application of the Protocol but many others, including premature babies, infants with Down Syndrome and other infants born with significant problems.

    The Protocol holds that it is medically and legally proper to withhold, withdraw treatment or medically terminate the life of a baby, when two out of the following seven conditions are met
    • functional disability,
    • pain, discomfort,
    • poor prognosis, and hopelessness,
    • lack of self-sufficiency,
    • inability to communicate,
    • hospital dependency and
    • long life expectancy (with a disability)

    The Protocol is applied to
    • babies with no chance of survival.
    • babies that have a very poor prognosis and are dependent on intensive care.
    • babies with a hopeless prognosis who experience what parents and medical experts deem to be unbearable suffering. For example, a child with the most serious form of Spina Bifida who is judged, even after many operations to have an extremely poor quality of life. A baby like my son.

    The Protocol states that people with severe disabilities have a poor quality of life – often so poor that others are entitled to decide that they should die. A statement like ‘…a child with the most serious form of Spina Bifida will have an extremely poor quality of life….’ which assigns to all persons in a group an attribute that may be true of some members is a stereotype and reflects a discriminatory attitude towards people with disabilities. Active life-ending measures are only recommended because of disability. Parents of a ‘normal’ baby that may need temporary help to breathe would be counselled to approve ventilation, but the parents of a baby with a severe disability would not.

    There is no universal consensus on the definition of what constitutes quality of life, particularly for children. Adults with Spina Bifida report that although they suffer from pain and discomfort related to their condition, they do not experience unbearable and hopeless suffering. In a study of Spina Bifida patients cited by the Health Council of the Netherlands, there was a large discrepancy between the negative medical prognosis made during the patients’ infancy and the degree of disability described by their parents after a four to eighteen year period in 50% of all cases. Quality of life is assessed by persons who are living with a disability or who are intimately involved in the life of a person with a disability. One study concluded that Spina Bifida is not a very important determinant of life satisfaction. Parents play a key role in protecting their children’s rights and their best interests remain the province of parents or when they fail, to the courts. Health professionals have a duty to avoid discrimination and maximize the life possibilities of any child with a disability. It is not appropriate to give health professionals the power to decide that a disability is so severe that the ‘best interests’ of the child is to die.

    Practices, like the Groningen Protocol, that counsel parents that it is best for babies to die because they have severe disabilities is in direct contravention of the standards required under the UNCRPD , and violates international human rights conventions that set the standards for legal and humane medical treatment recommendations for all people. The International Federation for Spina Bifida and Hydrocephalus (IF) fiercely opposes the Groningen Protocol.

    So Ellen, I don’t agree that parents do make decisions to terminate to alleviate suffering of their unborn baby, but they do agree to after counsel from medical professionals who in my eyes would be far more responsible to talk to their patient about prenatal hospice options in situations where a baby is not expected to live for a long period of time after birth. In the case of expected disability, all around the world governments have drafted Disability Strategies designed to break down barriers and the old “disability is a tradegy” model. All it needs now is for the medical profession to get on board and support families affected by disability, after all – what is the point in training to care for patients if in the long run there will be no patients to care for ?

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Diane – The protocol you describe is indeed disturbing. Likewise, I have heard stories from women who describe receiving skewed information about their baby’s diagnosis that emphasizes suffering and termination (as well as formal studies verifying that this occurs).

      However, I don’t understand how you can “disagree” with the stories of people who have told me (and others) that their babies’ potential significant suffering was their primary motivation. You can’t disagree with someone’s lived experience. And the idea that every parent who makes such a decision has been pressured by their medical professionals is quite patronizing, implying that every parent facing this difficult situation is incapable of withstanding outside pressure or gathering their own information. I’ve also talked to women facing dire prenatal diagnoses who say that their medical folk did everything right, showing no bias, offering only information and no pressure. And those women have made different decisions, some to carry to term, some to terminate.

      So while I share your concerns with skewed medical information and your abhorrence at the idea that there should be a seven-point scale with which authorities decide whether babies should live or die, I think it’s vital that we not reduce parents to unwilling, unwitting cogs at the complete mercy of a cold and cruel medical system. That’s not fair either to parents or to the many caring medical professionals who do their jobs exactly as they should.

      This is exactly why I emphasize narrative ethics, which gives people’s stories, their lived experience, a prominent place in ethical discussions. Otherwise it’s too easy to make broad generalizations about people and their motivations, and simplistic judgments of right and wrong that fail to reflect how complex and difficult reproductive decisions can be.

  • http://www.savingdowns.com Mike Sullivan

    Reproductive decisions don’t need to be complex and difficult if the unborn child is afforded its basic respect and dignity as a fellow human being, rather than having its right to exist being subject to another persons subjective judgement as to it’s worth and potential for suffering.

  • http://www.savingdowns.com Mike Sullivan

    I think Diane was also making the point that the idea of suffering as a reason for termination comes from the medical community, not the parent. Parents who have a diagnosis have a wanted pregnancy. Whatever decision the mother makes may be “her experience” and reflects her – it’s has nothing to do with the humanity of her child.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I still take offense at the idea that parents are witless puppets at the mercy of a cold-hearted medical community. And of course the mother’s experience reflects her. To believe that it doesn’t denies her full humanity.

      This is the story I’ve had in the forefront of my mind writing this post and reading the comments. The idea that this mother made the decisions she did because of medical pressure and because she didn’t see her child as human is ridiculous. It’s offensive. (The story is in three parts; this is the first.)

      http://choicesthatmatter.blogspot.com/2010/11/stories-matterwhen-clarity-is-elusive.html

      • http://www.savingdowns.com Mike Sullivan

        Thanks. Do you have links for parts two and three?

        Here’s an example of a couple who decided to trust their faith in God. http://www.lifesitenews.com/news/miracle-joey-the-boy-who-refused-to-die

        Playing God is more fashionable these days, so it seems.

        • http://www.ellenpainterdollar.com Ellen Painter Dollar

          If you scroll all the way to the bottom of the link that I gave above, you see a link for “Newer Posts.” That will take you to the next part, and then do the same to get to the third part.


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