Three Reasons Why We Might Not Want to Cure Down Syndrome

There’s a new scientific discovery popping up on my Google alerts about a potential “cure” for Down syndrome. According to the Boston Globe (Scientists Hit at Core of Down Syndrome), “Researchers at the University of Massachusetts Medical School have shown that it is possible to do what had once seemed unthinkable — shut down the extra chromosome that causes the developmental problems and intellectual disabilities in people with Down syndrome.” The Globe article details the science, but they also sum it up like this: “The gist of the discovery is this: People with Down syndrome are born with three, not the usual two, copies of chromosome 21. The UMass team found a way to suppress the expression of that extra chromosome, raising the possibility that eventually, a similar shutdown could be engineered in people, perhaps short-circuiting some of the manifestations of Down syndrome.”

 

They predict that this discovery will be able to be applied to humans within ten years and that it will be most effective if applied in utero.

 

We should be jumping for joy, right?

 

I’m not so sure.

 

I guess I should start by saying that I’m not categorically opposed to this research. Babies with Down syndrome miscarry at higher rates than others. There is a higher risk of leukemia and heart defect and Alzheimer’s for all people with Down syndrome, not to mention the more minor problems of vision problems and hearing deficits and the murky question of whether or how intellectual disability constitutes suffering.

 

But I should add that on the whole, this research has me worried. I’ll try to explain why:

 

1. Any attempt to “cure” Down syndrome (which is not a disease) assumes that the problems that come along with Down syndrome are located within the individuals with Down syndrome rather than within our society at large. Yes, there are physical and cognitive delays for kids with DS that can result in actual suffering, but the majority of people with Down syndrome report good lives and positive experiences for their families. I’m sitting in a public space right now and many people within view are wearing glasses. None of them would be categorized as “disabled,” even though they presumably have impaired vision. Without their glasses, some of them would be bumping into things and potentially harming other people. With their glasses, those problems disappear. On a much broader scale, disability in general ceases to be disabling when accommodations are put into place and when social stigma no longer accompanies said disability. (Read more in The Social Construction of Selective Abortion)

 

2. Silencing the third chromosome in trisomy 21 assumes that Down syndrome is categorically negative. Again, the list of potential challenges is long. Potty training takes longer. Teaching a child to be safe takes longer. And that’s not to mention doctor’s appointments and therapist visits and whatever health concerns come up along the way. And yet, though I haven’t found the scientific study to substantiate this claim, I have a sense that there is something positive about having Down syndrome. Something beautiful and good and true. Something that increases joy. In our case, something that gives Penny a kinder heart, an ability to love others more purely. People often stereotype individuals with Down syndrome by calling them “sweet” and “angels,” and anyone who knows a person with Down syndrome can contradict that claim. But anyone who knows someone with Down syndrome can also so there’s something to it. I think my concern here is that to take away the third chromosome is to take away more than Penny’s ear tubes and pronated feet and impulsivity, but rather it is to take away something essential to who she is (Read more in an earlier post: Grateful for Down Syndrome?)

 

3. From a more spiritual perspective, I worry about human tinkering with our genetic code, which is to say, I worry about “playing God.” I believe that God has entrusted us with the responsibility to attempt to heal and care for people with afflictions that cause suffering. I’m grateful for penicillin and vaccinations and cancer treatments and the like. But I’m not convinced that Down syndrome constitutes suffering (see News Flash: Not Everyone With Down Syndrome is Suffering), and I worry that these types of therapies will put parents in an impossible position of having to chose in utero whether to alter the genetic makeup of their children. I am reminded of the film Gattaca, in which Ethan Hawke plays a human whose parents allowed him to be born “naturally.” As a result, he has been deemed insufficient for higher-level jobs. Many dystopian fantasies imagine the world toward which we are heading–a brave new world absent of joy, in denial of human limitations and interdependency, worshiping the twin holy grails of physical perfection and economic productivity.

I’ve said it before, and I will say it again: I am grateful for Penny, for her limitations and her gifts, just as she is. And as much as I would love to make aspects of her life easier for her, my work towards that goal comes by way of teaching her and advocating for others to receive her as she is and support her in who she is becoming. I want Penny (and Cade and Ravi and Emily and Grace and all the other children with Down syndrome we know) to have the support she needs to become the woman God has created her to be. And I am not at all convinced that taking away her third chromosome will help us achieve that goal.

(Final photo credit: Phil Dutton)
About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Mark Leach says:

    All good points. The second one is one that is completely ignored in the reporting and will become easier to ignore should switching off the extra 21st chromosome become routine.

  2. LeticiaVelasquez says:

    The problem which bothers me is that with prenatal testing like MaterniT21 on the rise, and more expectant moms getting tested (in the UK their universal health care system will now conduct universal prenatal testing as is done in many other nations) more moms who do not love our children will know that they are expecting a child with T21. And they unfortunately, despite our best efforts to educate them about the joys of raising a child with extra chromosomes,in the vast majority of cases where a prenatal diagnosis is received, do play God and end the child’s life.

    Dr Jerome Lejeune, the French geneticist who discovered the cause of Down syndrome, and dedicated his life to finding a cure, put it this way, “I see only one way left to save them, and that is to cure them. The task is immense: but so is Hope.”

    • Mike Sullivan says:

      I discussed this very point with the JLF researchers in Paris. The only way left for them to save lives there is to have a cure, because 87% of all pregnancies for Down syndrome are aborted under their national screening programme. Their termination rate on diagnosis is a whopping 96% and almost all pregancies are screening.

      I don’t personally agree with that response, but I understand the despairing situation in France and neighbouring countries that are close to eradicating Down syndrome. All in the name of choice.

  3. Linda Aalderink says:

    This is a great response, Amy Julia. The world needs to know we wouldn’t change a thing about our lives or our children’s lives who happen to have Down syndrome. Our children have changed us/our families/our communities for the better and have taught us much about contentment, love and freedom to be who God made us to be. God’s design and plan are perfect. We ought not mess with that!

    • If it was not Gods plan for us to have medical science, we would not. I’m pretty sure the creation of penicillin didn’t cause outcries of going against “God’s plan.” If indeed there is a God, and if indeed this God has a plan, our ability to learn and advance science must be a part of it. The Bible does contain instructions to cure the sick, as well, so we may well regard medical science and the application of it to reduce suffering as a mandate. This attitude reminds me of a parable:
      “Once upon a time there was a man that lived by the river. He heard a radio report that the river was going to rush up and flood the town. The report said that the whole town should evacuate immediately. But the man said, “I’m religious, I pray. God loves me. God will save me.” But the waters began to rise. A man in a rowing boat came along and he shouted. ‘Hey! Hey you! You up there. The town is flooding. I can take you to safety.’ But the man shouted back: “I’m religious, I pray. God loves me. God will save me.” A helicopter came hovering overhead. A guy with a megaphone shouted. ‘Hey! You there! The town is fully flooded. Let me drop down a ladder and I will help you to safety.’ But the men shouted back that he was religious, that he prayed, that God loved him and that God would take him to safety. The man then drowned When he got to the pearly gates of St Peter, he demanded an audience with God. ‘Lord,’ he said, ‘I’m a religious man, I pray. I thought you loved me. Why did this happen?’ God said, ‘I sent you a radio report, a helicopter, and a guy in a rowing boat. What on earth are you doing here?”

    • We’ll see how you and your blessed family feel when you outlive your child. You’re the worst kind of person, going straight to hell.

  4. Ryan Hite says:

    I think it is a better option for people who would also consider aborting the child. If you can’t handle or afford the challenge or you wouldn’t want to, then you should not have to. We play god every day anyways and we are reaching the point to where we can design our children.

  5. Stella McLeod says:

    How do they know which chromosome is the “extra” one? Each chromosome has different genes. Maybe the genes for various health problems are spread over the three chromosomes. As I think the scientists said, this is decades away if it happens at all. So it actually won’t prevent abortions at this stage and just contributes to the society’s negative view of those with Down syndrome.

  6. Jenny Childress says:

    I want to offer another perspective. The research being done on trisomy 21 has enormous implications for the other trisomies as well. My daughter was born with trisomy 18, which is a much more serious and life-limiting chromosomal condition. I loved and cherished every moment I had with her in her short one year of life. And, if I could have turned off her third copy of chromosome 18, I would have done so. I understand that one cannot equate t21 and t18, but there are much fewer cases of t18 and much less research done on this syndrome. I for one find great comfort in the possibility that someday parents may not have to go through the loss of a child to t18, t13, or any of the rarer trisomies.

    • Barbara Fryman says:

      I had this exact thought. I love a little girl born with Trisomy 18, and I know if her mother could “make it better” for her baby she would.

      As for our little girl with Ds, I understand the hesitancy to change one’s child, but I don’t have to live with Down syndrome. If Mariana wished to pursue a viable cure I cannot see denying her.

    • Carol AnCel says:

      Even though trisomy 21 is more compatible with life, it still has devastating effects on the body. There is no denying that. No matter how cute your child is.

  7. Great piece. As the mother of a child with DS, I feel the same way. I would hate to remove the essence of who my daughter is in an effort to bring her up to speed cognitively or with some other such “advancement.” There is an intangible quality with DS, a joy, that far outweighs the challenges.

    • As someone who has worked extensively with individuals with down syndrome and other disabilities, its disconcerting that you think the “essence” of what your daughter is is inherently related to her medical condition. While you might find joy in her condition, or more likely knowing that she will likely be forever dependent on you and not leave the nest empty, most people would prefer their daughter not to have a drastically shortened life expectancy, extreme risk of medical complications, face the frustrations of knowing they are less capable than others, most likely never be able to have a romantic/adult relationship or start a family of their own to retain some ill conceived “intangible quality” caused by their disability.

      • Mike Sullivan says:

        It’s not a medical condition, it’s a natural genetic variance. Most people may share your negative bias, some practice acceptance.

        • Carol AnCel says:

          And some manage to overcome their denial and learn how to enjoy, accept and do the best for their child instead of THEMSELVES.IOW we accept and love our children for who they are, not something we wish them to be.

      • Carol AnCel says:

        Amen!! I truly BOGGLES the mind. You CAN love and accept your child wholeheartedly, yet still despise the DS!! DS is an anomaly and a disease with real physical consequences to the body.
        it has nothing at all to do with WHO that person IS. And it’s completely insulting to say that is so.

  8. Susan_G1 says:

    I admit to some surprise here. I’ve taken care of patients with physical and mental disabilities, and I do profess a desire for wholeness/wellness. I don’t think my CP patients are “blessed”. Though they can be charming, I don’t think of my s/p head injury patients are “blessed” (regardless of that ridiculous movie, Regarding Henry). I understand parents of Down children love them and find that they have unusual qualities. But I am puzzled by the option, if given the opportunity, to deliberately opt not to suppress the third chromosome. How would one know at the time of the decision (which might need to be fairly early in utero to prevent heart defects, etc.) that the disability might not be profound? Why would that possibility be desirable?

    I can understand the resistance to “playing God”. I live in a part of the country where it is not unusual for patients to refuse medical care for their children, which is almost always heart wrenching in my book. God gave us the intellect to assist people to become well. Why not use it?

  9. Carol AnCel says:

    I can not tell you how insulting these kinds of pieces are! Simply replace the word DS with any other chronic disease and you will see what I mean. It also promotes stereotypes and prejudice!! I am sorry, but not ALL people with DS are sweet and loving!! People with DS are just like the general population with regards to their personalities.
    Of course having a disease changes who you are by your experiences, yet decent caring people do not force others to remain in a diseased state just to make THEMSELVES happy, while the person with the disease continues to struggle. That is NOT love. It’s been proven many times over that the extra chromosome, which is NOT normal to the human body, is causing internal damage to the body!! At some point in time, you may very well have the very sad experience of watching your child slowly lose all the skills and knowledge the worked SO hard to gain!!!

    My 13 year old daughter has DS, and she is a true blessing that I enjoy every single day. She has taught me so much, and one thing she has taught me is to love selflessly and to FIGHT and struggle to get what you want, to NEVER give up. She has already asked why she is different. she is very frustrated with being misunderstood and treated like an idiot. It makes HER sad to see her peers doing typical things while she sits on the sidelines.
    One day, when her brain is healed, she will come back and tell you how foolish you are to ever think that she is anything less than a human WITH a disease. She is NOT a disease… it does not define her essence or personality anymore than her CHD does.
    To purposely advocate leaving people in a state of disease, just boggles my mind.

    • Thank you for saying this. My blood is boiling after reading this horrible piece. My spewing at the keys would not have been so eloquent. I couldn’t possibly have gotten my point across as you have done so well.
      I would have lost sight of my true feelings and opted toward malicious and vulgar insults flung at this author. I would have ripped her a new one for daring to bring “god” into it, as well.
      The absolute joy of my life, Cecelia, thanks you, too. I would love for her to live past the age of 30 to see a cure. She’s 2 now. We have time.

      • Rhyan, we obviously disagree with each other, and as I have made my arguments already I don’t want to try to refute your views. I do think it’s important to note, however, that the life expectancy of children with Down syndrome is 60, not 30.

        • Carol AnCel says:

          yes, and with loss of mental abilities due to early onset Alzheimer’s Disease.
          You clearly have your head buried deep in a hole……

      • Carol AnCel says:

        I don’t understand why God would be against curing DS, while being OK with curing every other disease??? The answer, of course. He IS fine with curing the DS. :)
        The good news is, the research will move forward, if there is a cure, or treatments, they WILL be found. I think at some point in time, people who refuse to treat their child, will be seen as monsters.

        In the meantime, NO ONE gets away with saying my Christine is beautiful BECAUSE she has a disease and would be less so with out it. That flies against all we know about humanity and our very souls. She must feel that when people with DS die, they will still have it in heaven as well Maybe we ALL regress to having the diseases we had in life???
        I don’t understand why people can’t see the foolishness in this line of thinking.

        As I said, it’s just plain insulting.

    • Mike Sullivan says:

      Your confusing a genetic condition with specific health issues. Down syndrome is a genetic condition not a disease. People with Down syndrome experience a range of health issues as does everyone else. If they have a health issue, it’s because they are human, not because they have Down syndrome. Just like you and me.

      There is nothing wrong with the condition, no-thing to be cured.

      • Carol AnCel says:

        I am not the one who is confused….

        Main Entry: dis·ease
        Pronunciation: diz-ˈēz
        Function: noun
        : an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism

        *** (as genetic anomalies),***** or to combinations of these factors

        : sickness, illness—called also morbus; compare health 1
        —dis·eased -ˈēzd adjective

        Even without apparent health issues, that extra chromosome is STILL causing damage. There is no way around that fact.

        • Mike Sullivan says:

          My daughter is not damaged thank you very much.

          • If Down’s syndrome is so great, what if we developed the technology to make sure every single baby was a down syndrome baby?

            Would the world be a better place?

          • My daughter is not damaged, but she does have a genetic disease that has many symptoms and would benefit greatly from treatments and a cure, if that were possible.
            I am so sorry that you feel people with diseases or genetic conditions are ‘damaged’.

            Your denial seems based in issues you are having with how you view others who have medical conditions.

            Or perhaps in how you think the world perceives those with medical issues.

            No matter, the fact remains that DS is a genetic DISORDER that science may have some very solid treatments for in the not so distant future. :) Facts are facts, truth is truth.
            And when our children die, they will be healed, just like all the others who also have diseases and disorders.

          • Are you talking to me or Mike Sullivan?

            If it’s meant for him, you should reply to him.

          • Carol AnCel says:

            Yes.. Mike… sorry… I keep forgetting the format is different from what I am used to. :)

          • Carol AnCel says:

            My daughter is not damaged, but she does have a genetic disease that has many symptoms and would benefit greatly from treatments and a cure, if that were possible.
            I am so sorry that you feel people with diseases or genetic conditions are ‘damaged’.

            Your denial seems based in issues you are having with how you view others who have medical conditions.

            Or perhaps in how you think the world perceives those with medical issues.

            No matter, the fact remains that DS is a genetic DISORDER that science may have some very solid treatments for in the not so distant future. :) Facts are facts, truth is truth.
            And when our children die, they will be healed, just like all the others who also have diseases and disorders.

      • Carol AnCel says:

        disease /dis·ease/ (dĭ-zēz´) any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown. See also entries under syndrome.

        DS is manifested by a characteristic set of symptoms and signs… it is an abnormality of the human body, a natural one to sure, but it is still not the normal state of our bodies. Do you advocated not curing any of the other genetic disorders as well???

        • Mike Sullivan says:

          What’s normal? We’re discussing people, not settings on a washing machine? If you see Down’s as an abnormality, that is your perspective of another. I don’t share it, we are all unique.

          • Carol AnCel says:

            In this case, it’s not about perspective, it’s about biology.
            And anything that causes the body to nor perform at it’s typical capacity is not normal. The value judgement YOU place on that seems to be a personal problem.
            Do you have the same issues when it comes to say, GERD, Heart disease? Do you also feel those conditions are all normal and to point out they are not the norm, is matter of perspective??
            Do you have any idea how silly you sound? :)

          • Another great point.

            This can be used against people who say that ‘pregnancy is not a disease’.

            Uhm, pregnancy might be ‘natural’ but the pregnant woman is not BETTER OFF being pregnant than she was before the pregnancy.

            Pregnancy is not a state of wellness.

          • Carol AnCel says:

            You are comparing apples to oranges there Valde…. pregnancy is the normal function of a female body and there are health benefits to the pg woman, one of them being lower breast cancer rates. Pregnancy is definitely not a disease, it’s the default position of every fertile woman of child bearing age. So no go on that one. :)

          • “pregnancy is the normal function of a female body”

            Doesn’t mean it’s healthy. If it was, there would never be any complications and 580k women wouldn’t die per year worldwide.

            “there are health benefits to the pg woman, one of them being lower breast cancer rates.”

            And I have heard that female fetuses actually INCREASE the risk of cancer.

            “Pregnancy is definitely not a disease, it’s the default position of every fertile woman of child bearing age.”

            Just because a female can get pregnant does not mean it’s healthy. After all, 9 year olds can get pregnant, and pregnancy is definitely NOT healthy for them. The ability to get pregnant does not correlate with the healthiness of the pregnancy.

          • Carol AnCel says:

            You and I will have to disagree on that score. :)

          • The side effects of pregnancy are not healthy.

            And birth, for one thing, is definitely NOT healthy for a woman.

            Normal, frequent
            or expectable temporary side effects of pregnancy:

            exhaustion (weariness
            common from first weeks)

            altered appetite
            and senses of taste and smell

            nausea and vomiting
            (50% of women, first trimester)

            heartburn and indigestion

            constipation

            weight gain

            dizziness and light-headedness

            bloating, swelling,
            fluid retention

            hemmorhoids

            abdominal cramps

            yeast infections

            congested, bloody
            nose

            acne and mild skin
            disorders

            skin discoloration
            (chloasma, face and abdomen)

            mild to severe backache
            and strain

            increased headaches

            difficulty sleeping,
            and discomfort while sleeping

            increased urination
            and incontinence

            bleeding gums

            pica

            breast pain and
            discharge

            swelling of joints,
            leg cramps, joint pain

            difficulty sitting,
            standing in later pregnancy

            inability to take
            regular medications

            shortness of breath

            higher blood pressure

            hair loss

            tendency to anemia

            curtailment of ability
            to participate in some sports and activities

            infection
            including from serious and potentially fatal disease

            (pregnant women are immune suppressed compared with
            non-pregnant women, and
            are more susceptible to fungal and certain other diseases)

            extreme pain on
            delivery

            hormonal mood changes,
            including normal post-partum depression

            continued post-partum
            exhaustion and recovery period (exacerbated if a c-section
            – major surgery — is required, sometimes taking up to a full year to
            fully recover)

          • Normal, expectable,
            or frequent PERMANENT side effects of pregnancy:

            stretch marks (worse
            in younger women)

            loose skin

            permanent weight
            gain or redistribution

            abdominal and vaginal
            muscle weakness

            pelvic floor disorder
            (occurring in as many as 35% of middle-aged former child-bearers
            and 50% of elderly former child-bearers, associated with urinary and rectal
            incontinence, discomfort and reduced quality of life — aka prolapsed utuerus,
            the malady sometimes badly fixed by the transvaginal mesh)

            changes to breasts

            varicose veins

            scarring from episiotomy
            or c-section

            other permanent
            aesthetic changes to the body (all of these are downplayed
            by women, because the culture values youth and beauty)

            increased proclivity
            for hemmorhoids

            loss of dental and
            bone calcium (cavities and osteoporosis)

            higher lifetime risk of developing Altzheimer’s

            newer research indicates
            microchimeric cells, other bi-directional exchanges of DNA, chromosomes, and other bodily material between fetus and
            mother (including with “unrelated” gestational surrogates)

            Occasional complications
            and side effects:

            complications of episiotomy

            spousal/partner
            abuse

            hyperemesis gravidarum

            temporary and permanent
            injury to back

            severe
            scarring
            requiring later surgery
            (especially after additional pregnancies)

            dropped (prolapsed)
            uterus (especially after additional pregnancies, and other
            pelvic floor weaknesses — 11% of women, including cystocele, rectocele,
            and enterocele)

            pre-eclampsia
            (edema and hypertension, the most common complication of pregnancy, associated
            with eclampsia, and affecting 7 – 10% of pregnancies)

            eclampsia (convulsions,
            coma during pregnancy or labor, high risk of death)

            gestational diabetes

            placenta previa

            anemia (which
            can be life-threatening)

            thrombocytopenic
            purpura

            severe cramping

            embolism
            (blood clots)

            medical disability
            requiring full bed rest (frequently ordered during part of
            many pregnancies varying from days to months for health of either mother
            or baby)

            diastasis recti,
            also torn abdominal muscles

            mitral valve stenosis
            (most common cardiac complication)

            serious infection
            and disease (e.g. increased risk of tuberculosis)

            hormonal imbalance

            ectopic pregnancy
            (risk of death)

            broken bones (ribcage,
            “tail bone”)

            hemorrhage
            and

            numerous other complications
            of delivery

            refractory gastroesophageal
            reflux disease

            aggravation of pre-pregnancy
            diseases and conditions (e.g. epilepsy is present in .5%
            of pregnant women, and the pregnancy alters drug metabolism and treatment
            prospects all the while it increases the number and frequency of seizures)

            severe post-partum
            depression and psychosis

            research now indicates
            a possible link between ovarian cancer and female fertility treatments,
            including “egg harvesting” from infertile women and donors

            research also now
            indicates correlations between lower breast cancer survival rates and proximity
            in time to onset of cancer of last pregnancy

            research also indicates
            a correlation between having six or more pregnancies and a risk of coronary
            and cardiovascular disease

            Less common (but
            serious) complications:

            peripartum cardiomyopathy

            cardiopulmonary
            arrest

            magnesium toxicity

            severe hypoxemia/acidosis

            massive embolism

            increased intracranial
            pressure, brainstem infarction

            molar pregnancy,
            gestational trophoblastic disease
            (like a pregnancy-induced
            cancer)

            malignant arrhythmia

            circulatory collapse

            placental abruption

            obstetric fistula

            More
            permanent side effects:

            future infertility

            permanent disability

            death.

          • Carol AnCel says:

            As I said.. not getting into that. You can believe whatever feminist propaganda you wish, I will trust my body. :)

          • It’s biology, not feminist propaganda.

          • Carol AnCel says:

            Just out of curiosity, how many times have been pg?

          • What does the number of pregnancies Valde may or may not have had matter? She’s citing biological realities that are well known to every single obstetrician on the planet. In fact, the first person I ever heard say that pregnancy is not a state of wellness was an OB/GYN.

          • Even a relatively uncomplicated pregnancy creates permanent changes to female physiology. While it is a natural state, to be sure, it is *not* a state of wellness.

        • http://www dot mayoclinic dot com/health/down-syndrome/DS00182/DSECTION=complicationsDown Syndrome Complications. I think that the Mayo Clinic is a good, unbiased source to look at such things.

          Quote from article:

          Heart defects. Approximately half the children with
          Down syndrome are born with some type of heart defect. These heart problems can be life-threatening and may require surgery in early infancy.

          Leukemia. Young children with Down syndrome are more likely to develop leukemia than are other children.

          Infectious diseases. Because of abnormalities in
          their immune systems, those with Down syndrome are much more susceptible to infectious diseases, such as pneumonia.

          Dementia. Later in life, people with Down syndrome
          have a greatly increased risk of dementia. Signs and symptoms of dementia often appear before age 40 in people with Down syndrome. Those who have dementia also have a higher rate of seizures.

          Sleep apnea. Because of soft tissue and skeletal
          alterations that lead to the obstruction of their airways, children with Down syndrome are at greater risk of obstructive sleep apnea.

          Obesity. People with Down syndrome have a greater tendency to be obese than does the general population.

          Other problems. Down syndrome may also be
          associated with other health conditions, including gastrointestinal blockage, thyroid problems, early menopause, seizures, hearing loss, premature aging, skeletal problems and poor vision.

          Mike seems pleased to opine that families who are not financially able to deal with these sorts of complications should just suck it up … particularly since he lives somewhere with universal health care and thus does not have to pony up the $$ to deal with them. In fact he seems to think that these concerns on the part of prospective parents should just be ignored. :-(

  10. I 100% agree with this Amy especially the quote “assumes that the problems that come along with Down syndrome are located within the individuals with Down syndrome rather than within our society at large” My 10 year old daughter Chloe who has Down syndrome has planted more positive seeds in 10 years than most do in a lifetime, and I would change NOTHING about her. I am the disabled one, and it is the culture that needs cured and healed from impossible mandates for perfection and success which have led us into darkness. I pray people wake up soon and embrace our most priceless gift – LIFE before we are all classified as “defective” and subject to a “cure” http://chloesmessage.blogspot.com/

  11. A note purely on language. While Down syndrome may not be a “disease” as that word is typically applied, neither is my genetic bone condition, osteogenesis imperfecta. We typically call it a disorder or condition causing impairment or some such thing like that, as opposed to something like malaria or whooping cough or the measles—diseases caused by organisms. My condition is likewise a “natural genetic variant.” The fact that it is not a disease and is a natural genetic variation does not negate my desire for its effects (frequent broken bones, etc.) to be limited, even eliminated via cure. Then again, there are people with my condition who would say they would not want a cure, for the same reasons you cite here. I just think it’s important to know that saying DS is not a disease does not necessarily separate it from other genetic conditions, some causing more clearly problematic effects than DS does, or solve the conundrum of whether or not it should be cured.

    • Ellen, I agree with what you’ve said here, but I still think the distinction between disease and condition is important. There are ways in which diseases and conditions are quite similar when it comes to physical disability/debilitation, potential suffering, and so forth. But genetic conditions, it seems to me, raise another set of issues when it comes to what it means to be creatures, human beings, and, back to the post, whether or not conditions that cause some negative physical and mental effects are categorically negative or bad. As we’ve talked about before, I understand why you would want OI (or its effects) to be eradicated (cured?) from your body. And I think some of my concern when it comes to DS centers around the role DS plays in Penny’s brain development and therefore, it seems, in the development of her personality, of the part of her that makes her herself. It’s a slippery line, and probably more a philosophical one than a biological one, but I’m hopeful that people can at least be in conversation about it rather than assuming categorically that Down syndrome is negative and should be eradicated one way or another.

  12. Aaron Cobb says:

    I’ve been following this discussion and, Amy Juila, I really appreciate these thoughts. As a father of a child who had Trisomy 18 and lived only a few hours after birth, I have a lot of ambivalence about these kinds of discoveries. I’ll just list here my questions because I think I have more questions than settled views.

    1. What would this mean for our understanding of the identity and humanity of those with a trisomy? Is the third copy somehow essential to the individual’s nature such that silencing the third copy somehow changes who the person is? More personally, who is the person apart from the trisomy that characterizes the person? Would the individual remain the same individual?

    2. What would this mean practically for parents and society to have this capacity to remake or refashion individuals in accordance with this notion of health?

    3. What would it take (in terms of scientific experimentation) for scientists to get to the point where they could offer this kind of treatment? Human experimentation of this sort it seems involves a host of possible unintended and harmful side effects to the individuals on whom they experiment. And it is quite clear that there would be no consent from these individuals.

    4. What are the broader implications for social inclusion and justice for those with disabilities? If this form of treatment were to become available, would this create a kind of expectation that families would be irresponsible if they chose not to use this treatment? Would this produce a more just society for those already living with disabilities or would this create a kind of stratification of society where the net effects would be greater inequality and injustice for those with disabilities?

    5. What kinds of pressures would this place on families in terms of the choices they make to care for their children? And how would this alter fundamental social relations of love and friendship towards those with these kind of limitations?

    I suppose there are plenty of other questions, but these are the questions I’m thinking about these days in relation to this new discovery.

    • Aaron, thank you for engaging with this topic with such graciousness and thoughtfulness. I share your questions and concerns, and I hope we will be able to at least begin ethical conversations within our broader society about the nature of humanity and the role disability, including trisomies, may or may not play in it.

  13. What if it was a way to mend spina bifida? Or muscular dystrophy? Or color blindness? Or any other congenital problem?

    Typed with the one hand my retarded brother did not cut off in a fit of rage.

  14. RA Hudson says:

    If gene therapy becomes available, I would wholeheartedly want it for my daughter. Yes, she’s terrific exactly as she is, but if medicine would allow us to reverse or repair cognitive delays, I would be cruel to withhold that advancement from her.
    I’m sure all parents and advocates for those with Down syndrome are happy to continue fighting the good fight and trying to change the world…but we can continue to raise awareness AND take advantage of advancements in medicine.

  15. Jade Kernt says:

    Patheos? More like pathogen. I clicked on this article because the tile was so crazy sounding. What 3 reasons could there be not to cure down syndrome? I read the article and it was clearly laid out for me. Religion, religion and religion. Somehow religion defies logic. It’s really unbelievable that this article even comes up in a Google news search.

  16. Jade Kernt says:

    horrible article. No logic, all faith.

  17. “Silencing the third chromosome in trisomy 21 assumes that Down syndrome is categorically negative”

    I don’t get it? Just because a kid with down syndrome can function fairly normally and parents love him equally, doesn’t mean that a kid wouldn’t want to have a groundbreaking career, sexual life, etc. Just because you love a kid with DS doesn’t change a fact that it is burden for him and if he could chose, he would go for healthy himself.

    • Or here is another way of looking at it: What if every healthy, normal kid were to be injected with a chemical that gave them DS? Would that be preferable to how they are now?

      What if all children were genetically engineered to have DS? The entire human race will now have DS? If it’s so great….you know?

  18. what kind of idiot wrote this? is this really a joke? way to compare a person with DS to a person who needs glasses. REAL good comparison….

    • First of all, that was horribly rude. Second of all, if you do your research, you’ll find that there was a time in this country when some people wanted to practice eugenics on people who wore glasses. The comparison is not nearly as outlandish as you think.

      • citation needed

          • Thanks. I’ll put it on my to read list.

            I was reading another forum a few months back, and one of the posters was complaining about how ‘socialism’ had resulted in genetic weaknesses such as myopia being passed down generation to generation – because with ‘socialism’, people look after the ‘weak’, and a good conservative would have just let those week myopics die back in cro magnon times.

            His basic premise was that without socialism and ‘caring for others’ the human race would be much stronger than it is now.

          • As a matter of fact, eugenics and socialism had very close ties. Major supporters of eugenics included such prominent socialists and progressives as G. B. Shaw, Margaret Sanger, and John Maynard Keynes.

          • And right wingers, such as Hitler.

  19. The Bechtloff says:

    This article was absolutely sickening. I wrote a full reply to this on my blog if anyone’s interested.

    http://landsharkattacks.blogspot.com/2013/07/the-churchs-glorification-of-down.html

  20. I’m about to go on vacation, so I am going to suspend the comments on this thread since I won’t be able to moderate it at all. I do plan to address this question again in the fall based upon many of the helpful critiques and words of support that have come in thus far. Thanks.


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