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Is it ethical?

I saw part of a documentary last night about four children in the United Kingdom who suffer from Harlequin type ichthyosis. This is a serious, hereditary skin disease that causes skin to become abnormally thick and cracked, as well as eyes, ears and noses to be stunted.

Because the skin is the body’s way of keeping moisture in and bacteria out, people with this disease can become dehydrated very quickly and the risk of infection is also very high. For this reason, babies born with this disease never used to survive the first few hours or days after birth.

The disease can now be managed to some extent by an intensive regimen of bathing and “creaming” – smearing thick, greasy cream all over one’s body three or more times a day. In spite of these treatments, few people with this painful, disfiguring disease live into adulthood.

Harlequin Ichthyosis
A diagram showing symptoms of harlequin ichthyosis in a baby. Copyright Foundation for Ichthyosis and Related Skin Types.

When Dana Bowen, one of the children with this disease that was featured in the documentary, was born, her condition was obvious. Her parents cared for her over the next seven years, becoming intimately familiar with the debilitating disease and what it was doing to their child.

They were told that if they had another child, the chance of it being born with the same disease were one in four (twenty-five percent). They decided to risk it. When Lara Bowen was born, she had the disease too. Seeing the tiny child’s reddened skin covered in scales was heartbreaking.

Is it ethical to have a child when the risk of it having a severe hereditary disease are so high?

49 Responses to “Is it ethical?”
  1. wemi:

    When my mother taught kindergarten and I volunteered in her classroom. I remember a young girl with a skin condition in one of her classes. After watching this documentary, I called my mom and asked her if the young girl was diagnosed with Harlequin type ichthyosis. She confirmed that she had but also told me that her parents tried for a second child and that child was born without the skin condition.

    It’s an interesting question. I don’t think I could really say what I would do until I have children of my own or had a child with this skin condition. The biggest concern that the children in the documentary expressed was the staring and snickering that they received from adults in public. They talked about children doing the same but the difference was that the children would ask them about their conditions instead of looking at them like they were aliens.

    I guess my point is, a child with a “condition” is going to suffer from the intolerance that exists in the world so if parents are willing to care for a child with this type of skin condition that’s their choice. The children in this documentary seemed very happy, well adjusted and I am sure their parents would love them the same with or without a skin condition.

  2. nicoleb:

    I was stumped when I read this post and was nervous to provide my thoughts because the topic is so sensitive. I really like your answer Wemi. Nicely said. I agree with you totally. I think once someone is a parent, or maybe a parent of a child with a terminal disability/illness, they could answer this post with an insight that I lack.

  3. Ade:

    I think what wemi is saying is true, but I’m not sure it’s a good answer to the question. It’s true that the lives of these children have value, it’s true that their parents love them and cherish them, and it’s true that it was not guaranteed that the parents’ second child would have the same disease.

    But I’m not asking whether or not it is ethical to take away the existence of these children, because of course it isn’t.

    This discussion raises some interesting questions. Imagine a married couple that decides to have two children. They have two wonderful kids. It’s the year 2001 and they decide to have a third child.

    Billy is born just before the end of the year. He’s a beautiful baby and he grows into a great kid. He loves tormenting the cats, loves sports, loves his mom and dad. He is frequently dirty. His mom is fond of tousling his hair and squeezing him really hard before he trots off to play in the backyard. It’s 2006 and he’s almost old enough to go to kindergarten.

    Now rewind back to the year 2001. Our hypothetical married couple make a different decision. After much soul-searching and examination of their financial circumstances, they decide not to have a third child. In doing so, have they “destroyed” Billy? Have they taken away Billy’s existence?

  4. Tim:

    “In doing so, have they “destroyed” Billy? Have they taken away Billy’s existence?”

    Of course not. Billy never existed in the first place. The only things that exist in the future are those that are brought about by events in the present. There is no “future Billy” that suddenly disappears because he is never conceived.

    In fact, if I went out and murdered someone, I wouldn’t be destroying their future self – just their present self. Who knows if they even had a future?

  5. alevo:

    I was born with three nipples and my parents still love me.

    This topic begs the question: should midget be able to have children?

  6. wemi:

    But the intent to have Billy is still there?

  7. Tim:

    “This topic begs the question: should midget be able to have children?”

    The offspring of little people (those with achondroplasia) will not necessary be afflicted with dwarfism. “If both parents have achondroplasia, there is a 50 percent chance that the child will inherit the condition, a 25 percent chance that the child will not have it, and a 25 percent chance that the child will inherit one abnormal gene from each parent and have severe skeletal abnormalities that lead to early death.” (source)

    It’s certainly a risky decision to make. However, a child who grew up with that condition with parents who have it as well would certainly have an easier time “fitting in” or “feeling normal” than a child with harlequin type ichthyosis. The real risk is in inheriting a single abnormal gene. 25% is pretty high.

    “But the intent to have Billy is still there?”

    So? Intentions aren’t actions. You may intend to go out for dinner and end up staying in – that doesn’t mean you went out for dinner in the future before you decided not to. Nothing happened and nothing changed in future time. Choosing not to have a child is the same as not ever considering it.

  8. Iliafer:

    Here’s another qustion to ponder:

    Lets take the same couple in Adrian’s story, who after having their first child with Harlequin type ichthyosis decided to risk having a second. However, they had the fetus tested while still in the womb and discovered that it was also afflicted with the Harlequin condition.

    What then? Is it unethical to abort that fetus? Would you abort the fetus if you were the parents in this situation? Is it even ethical to test for the condition in the first place? If in vitro fertilization techniques allowed you to select only the healthy “fertilizations”, would it be ethical to even have that choice?

  9. Tim:

    I’m going to avoid your abortion question, having long ago decided to never ever discuss abortion on the internet again. But as for selecting healthy genetic material over damaged, defective or mutated fertilization, I think it would be unethical not to make that selection. Spermatozoa and ovum are not human beings, nor are they even human beings in progress.

    When the question is “should I have a healthy child” or “should I have a child who will suffer every day from a debilitating condition”, I think the answer is obvious. This isn’t about tossing sick kids into the wilderness for the wolves – it’s about preventing anyone with faulty genetic mateiral from even being conceived.

  10. Iliafer:

    But at the point of fertilization the (which is the proposed point of selection I have indicated) you are no longer dealing with independent spermatozoa or ovum. You’re dealing with the beginnings of a fetus, dividing cells. The whole technique of in vitro fertilization involves harvesting several ovum and fertilizing as many as possible, then implanting the fertilized ovum in the uterus. So, you have several fertilizations to theoretically choose from (I say theoretically because you can’t really “choose” yet – I don’t think we can genetically screen the fertlizations at this stage, its too dangerous).

    The whole situation begs the question: When is it more than a sperm and ovum? When do you call it “life”? At the point of fertilization? At the second trimester? When the fetus begins to suck its own thumb?

    I suppose that’s a whole other debate though…

  11. Ade:

    It is a whole other debate, and one that I think Tim is wise to avoid, since it has no resolution and one is unlikely to be found here.

    The answer to “Is it unethical to abort that fetus?” when it has been diagnosed with some kind of abnormality, is, I think, “yes” if you think abortion in general is unethical, and “no” if you are pro-choice to begin with. The choice is clear in the first case, and in the second I think it would be very difficult for a pro-choice person to argue that abortion is permissible except when it based on a problem in the fetus.

    It’s worthwhile looking more closely at what a “debilitating condition” is, exactly. A little person born into an average-sized family may have many difficulties, but a little person born into a family of little people certainly has fewer (e.g. the discomfort of being different is considerably less).

    It’s easy to assume that disability brings unhappiness, but that may not be any more true than the idea that money brings happiness. The assumption that disabled people wish to be cured may not be accurate either. As this article says, “Many disabled people express their annoyance with pitying attitudes and find it very frustrating that they must persuade others that they (disabled people) are happy”:

    Two or three times in my life—I recall particularly one largely crip, largely lesbian cookout halfway across the continent—I have been looked at as a rare kind of beauty….But most often the reactions are decidedly negative. Strangers on the street are moved to comment:

    I admire you for being out; most people would give up.
    God bless you! I’ll pray for you.
    You don’t let the pain hold you back, do you?
    If I had to live like you, I think I’d kill myself.

    I used to try to explain that in fact I enjoy my life, that it’s a great sensual pleasure to zoom by power chair on these delicious muggy streets, that I have no more reason to kill myself than most people. But it gets tedious.

  12. Anonymous:

    I can’t believe Tim answered my midget question.


  13. This is an interesting topic. I accidentally stumbled upon the term harlequin baby, and after some googling, found this page.

    It’s a difficult question to answer, no doubt. As a nihilist, I almost believe that if anyone has any kind of crippling illness that will be passed on to future generations, they shouldn’t reproduce. Mayhap they can live, but not have children. Eventually wouldn’t that strengthen the human race? But of course, I’m a nihilist, and scorned for it.

    All I can say is this. I’m not a parent who’s had a child with a hereditary disease, nor is there much of a chance I’m going to. Because I lack the experience, it would be unfair for me to give an answer. All I can hope is that anyone in this situation has the wisdom to make the right decisions.

  14. Mello:

    I’m the same as Xin as to how I got here.

    I also believe that people who have a great risk of passing on an illness probably shouldn’t reproduce. There are plenty of children up for adoption, and I don’t see why everyone “must” have their own, especially if they’re high-risk for some serious ailment.

    I may be a heartless person or something, but I am a firm believer that those with extreme cases of physical/mental disability should not be “forced” to live(even by parents who may love the child). I know for a fact that I would never want to grow up being the object of ridicule as most do with the mentally disabled, and I don’t think any amount of tolerance in the world could change that. If I can’t think freely and intelligently, then I don’t think that I would have a “need” to live. Same goes if I had a disease that would seriously hurt my quality of life, like these babies.. It really seems cruel to let them live for even a few hours before they would die, let alone using our limited technology to just make them stay alive for an unknown amount of time.

  15. angeline:

    I think that there will never be an end to this issue as I believe that both sides will have very good reasons to support their stand. Some may feel that it is not right to take away the child as it is akin to murder, while others feel that it would be better to never to have allowed it to start in the first place. Personally, I feel that it is better to have never conceived the child in the first place, because it spares the parents from the grief of losing a child and it also spares the child from suffering, even if it lives for only a few short hours. I believe that until we can find ways to solve such hereditary diseases, this controversial issues will still be widely discussed by the world.

  16. Fabio:

    Disgusting. You all chatting of everything, pretending you are making ethics. You are making only show on the skin (literally) of these poor babies.
    So you go down with sick question “should they have babies” and avoid to focus on the bestiality in you.
    These problems exists. It happens. But they are extremely rare so YOU SHOULD THINK ABOUT THE MEDIA NOT ABOUT THE PARENTS.
    The worst in the world is people pretending they have interest while they are only sick of bestialities.


  17. dnt av web site but tis daseese is realy gross poor things

  18. Sheena:

    I can not believe this is a discussion regarding ethics. Would you really choose to let your child die because they have a skin disease? If you have a ten year old child who has servere burns then he/she will suffer as harlequin children do. One of the differences would be that this child would be allowed to live some resemblance of a normal life before being disfigured. Would you then advocate for us to write this child off because of burns, even though he/she is a human being with personality and family and loved ones.
    The harlequin children featured in this documentary do have other siblings with the same disease. Their parents took a risk by having a second child, which in both the Betts and Bowan families resulted in the 2nd children also having Harlequin disease. Do you believe that having a sibling with the same disorder would provide support for the older sibling. they would have somebody close to them suffering the same thing. Somebody to understand what they are going through. Does that then promote a closeness and a bond between the siblings. One comment I read discussed dwarfism and how being a little person in a family of little people is more understanding than being the only person different. Isn’t that what has happened to these families?
    This documentary has provided me with a greater understanding of what these children go through. I would love an update on lucy, hannah, lara and dana if anybody has one. Maybe we should all take a lesson from these kids and try not to be so judgemental. These children have said that the stares and comments from adults affect them more than the open curiousity of children. Maybe we should all learn to be more accepting of others with disabilities. I will try to be and good luck to any body else willing to try.

  19. Anon:

    When did the question turn to if taking the life of a child who was already born or even just conceived? The original question was if it was ethical to conceive the child to begin with if there’s a high risk of them being born with a severe hereditary disease.

    About what Mello said. I think that if a couple knowingly or unknowingly conceives a child who is mentally or physically handicap they have an obligation to work to keep them alive or give them to someone who would. Obligation sounds harsh and unfeeling, but I don’t know what other word to use. Anywho, I know a lot of people who are either just mentally or mentally and physically handicap to varying degrees and who lived or are happily living. I know that the tolerance of people can actually make an awesome community which satisfies basically everyone. The town I grew up in has an amazing program/organization for mentally handicap people and that the people I’ve meet, through my sister who is handicap, are quite happy to be alive.

    As for not wanting to live if you were born mentally disabled, you wouldn’t really have that notion of what you’re ‘missing’ by being disabled and therefore would not want to die for lack of it. Although I personally find some of the happiest and most beautiful ( I know I sound like a cheesy special) people are mentally handicap. Besides my sister, who is the happiest, sweetest, and most selfless person I’ve ever known, I’ve meet many others with more severe disabilities who are still enjoying being alive.

    I don’t have any real argument for people born with physical disabilities or gain them later on in life because I believe it has too many factors and I don’t know enough of them.

    Yes, I realize that I didn’t answer the original question either… But, I don’t really know my set opinion on it because I’m still debating it with myself because there are just arguments on both sides and I don’t know yet.

  20. Mina:

    I’ve read about conceiving and aborting and ethics and stuff…

    But what about quality of life?

    Is it ‘beastly’ to bring a child into the world, knowing that they will never lead a normal life? That they will be pointed and stared at for their deformity? That relationships, friendships, school, work, family, everything might suffer, in their world?

    To have children, knowing that they will not be completely, and in every sense of the word, healthy, is selfish, selfish, selfish. The civil libertarians act so righteous, but just because there is life doesn’t mean it will be fulfilling.

  21. Mike:

    I agree with Tim throughout, wholeheartedly

    It is very unethical for the couple to have another child for the following reasons:

    1 in 4 are not great odds

    We must realize both the emotional AND physical pain children with HI experience.

    I won’t go into to detail, because the details are too gross and distrubing to take. Just go to youtube and type in harlequin ichtyosis.

    We must always put the well-being of our children as our top priority. Having another child is not only an un-ethical act by the parents but SELFISH AS WELL!

  22. Casey:

    I watched a tv show last night on these 2 families and personally thought that nothing was different about them. To me they are just another human being, and i belive that every human being has a right to living life.
    These girls had their own ways that they deal with stares and ridicule, Dana said that she would just give a funny face back to everyone that gave a funny face to her. Also the eldest of the 4 girls had many friends with whom she would go out for drinks with.
    I think that its great that the parents worked up the courage to have another child. It can be very saddening to be an only child. I hear it all the time from my grandmother and cousin. Image how much harder it would be for these girls having no siblings to lean on, noone to stick up for each other and noone to share the pain with. Imagine going through it all by yourself. I know that it is a very hard topic to speak about, having not been through it myself.
    Just say that the second siblings were born aithout the disorder, im sure they would still have an amazing bond. With %75 chance of not having another harlequin baby i would try for another one too. We have to remember that people with disorders can live a happy life, they adapt to everything they are faced with very easily. It is like saying is it unethical to bring a baby into poverty?? Everyone is an individual and everyone can succeed.

  23. Dean:

    People, get real. All those who find it abhorrent to even think about stopping specialized treatment to extend the inevatable – have got to grow a spine. Just because we have the technology (if you want to call it that in this case) to ease some of the infants pain and suffering, does not mean it is called for without question. It is the parents call, no ifs, ands or buts.

    Just think back, back before medicine. For 99% of our Human existence, we had no “technology” to extend the suffering of babies born with highly defective DNA. They just died. For millions of years. Call it cold if you will, but that is our species way of thriving. Looking at our history in a clinical way, only the best examples of Humans that have adapted fully to their environments have lived, reproduced others like them, and eventually created a situation that allowed themselves to take over the Earth and be at the top of the food-chain.

    Again call it cold if you will, but if we as a species kept alive every single chance at life that wasn’t able to keep up with the specimens that eventually took over this planet – our race never would have took over this planet. We would have been overrun by lions, tigers, and bears, if not the Neanderthals that eventually split off of our original forefathers all those years ago. But instead, mutations and mistakes in our DNA did not survive – or were not allowed to survive – leaving the healthiest to live. For just about all of our existence. So I ask you – what is wrong with keeping things that way? Because it is “cruel”?

    What is so cruel about not letting a BEING that feels pain and is scared, suffer any longer. ARE YOU THE ONE SUFFERING? No, you’re just the one THINKING about the suffering of an individual with serious disadvantages at ever being able to even exist, nevermind exist with massive pain. It makes you sad………Understandable of course, for we are sympathetic creatures, and there’s nothing wrong with it. But let it be said that for all those millions of years we developed into what we are today, someone such as yourself who got in the way of letting the strong survive, would have been killed off by those around you. Again, the name of the game is to not let DNA that will make our species unhealthy in the long run, survive.

    It is a MUCH tougher thing to do, end someone’s suffering, than DO ANYTHING BUT face having to end one’s suffering. It’s EASIER to not make that decision. Ever had to put a bullet in the head of a suffering but surely-dead-soon animal? NO? Well I did, and it wasn’t easy but I had to. The groans were too much for any of us to bear. ………Only the most intelligent of Humans can do it, for they have to summon up enough courage to go against everything their mind and body tells them to do – that is NOT end a life. It’s not so much courage than it is intelligence – the ability to think outside of yourself for one friggin minute, to help someone else. ……So we know that if we let things move forward, pain, lots and lots of PAIN and suffering will continue. The smart Human puts a being not equipped to live anymore without excruciating suffering, DOWN. Because he cares. Because he cares to NOT hear the suffering screams anymore. Because he cares to NOT let the being wish for death anymore. He will deliver it for them because he is COMPASSIONATE. But of course, only in the most extreme cases.

    The right thing to do, and I am not ashamed or embarrassed or affraid to say this – is to let one of natures mishaps die out as it would have for ALL OUR EXISTENCE. And the best way of doing that is to not let another suffering baby – suffer any longer. It only serves the purpose of the person who is SAD for the baby, not the bay itself. Believe me, those babies are not wishing anything but instant relief, and nothing more.

    If I sound cruel, sorry, but medicine is taking things to such an extreme that we are presented with situations we never had to face in our entire existence. How can someone act as if it is so WRONG to euthanize in this case? Where do they get off? Show me in our history, where it is ethical to prolong such suffering? Show me!…….You can’t. Because we’ve always euthanized in this case. However it was done, it was done. And not without interior struggle of the one doing the deed I might add. So that is why I am confused by people who act as if a person is somehow “inhumane” if he feels euthanization is the best path. There is hardly any history of NOT euthanizing (that is of course, if any of these people can think past their own meager handful of decades on this Earth, as compared to their ancestors millions of years of history up to this point).

    Nope, this pointing our finger at people who bring up euthanization, is a recent thing, it is a self-righteous, immature, “I want everything perfect” attitude that has been allowed to fester in recent decades because of medicine. Now some want it all, with no consiquences or mistakes. They actually put a being’s “right” to live (as if they were promised before hand) before doing the right thing for our society’s survival, and for the individuals suffering………. And to those who say we are at the end of our history, that we have nothing left to conquer and it’s all over but the cryin’ – speak for yourself. Me and my family, and my offspring, are movin’ on in a BIG way and will do what it takes to survive even the deadliest diseases, or the nastiest nuclear wars.

    These name-callers will have us all believe those who choose to not keep a baby with Harlequin Ichtyosis alive – are cruel, that euthanization is cruel, are in fact just people looking to elevate themselves over someone else by putting them down. Whether they know it, or not. And most of all, are just too weak and scared to make the tough call of putting someone out of their misery. All those years ago, when our species dominated anything that crossed our path, those people would not have been trusted to be responsible for ANY tough decision-making. And it should stay the same way today. You’re squeamish, and cannot be trusted to protect us from harm if ever need be.

    To all those who will say I am not thinking of the baby – I say I AM thinking of the baby MORE than you. I am able to look outside my own fears, to place myself in another’s shoes, so to speak, so that I may help them suffer less, to understand their pain – not be affraid of it.

  24. Nel:

    I too stumbled upon this site researching harlequin itchthyosis and a few things people have said have kindof bugged me. The so-called thriving or evolution of the human race has not been about eliminating those born with defective DNA at all. Technology has allowed those who have what would have been life-threatening diseases to them hundreds of years ago, to be able to LIVE normal lives today.

    Of course not all of them, but a fair amount. Strength comes in diversity, ever heard of that? I was born with spina-bifida aculta and guess what, its not a genetic disease, its caused by a deficiency of folate intake from the mother. Does that mean i can ‘eliminate’ my mother because she’s the cause? Of course not. Even if it were possible to abort every fetus showing somesort of defective DNA, either because “i don’t want an unhealthy child” to “i don’t want them to suffer” – life is pain. Some people have it in more dosages, yet from my experience I’ve found that people who constantly deal with pain, seldom complain! – because it is THEIR way of life.

    Yes it all comes down to the parents’ choice, and when dealing with the prospect that their child may have a debilitating disease, I can imagine that they would only focus on the negatives. It would be hard not to. I believe that any chance at life is worth keeping, especially when it comes to your unborn child.

    In regards to the “when does life begin” question…in the end the parents know they’ve already set the parameters to develop a living, breathing human being. And if the foetus shows somesort of abnormality, they should try to embrace it, because it is their child and theirs alone. Something that they’re allowed to be selfish about because in this world hardly anything is really truely “ours”.

    To the nihilists.. I don’t pretend to understand what that means, but it seems like you fear anything that is different, but in your minds maybe you percieve that as “bad”. There’s another word for that, and you know you know it. I get from your “maybe they can live, but not reproduce” statement that you value the lives of so-called normal people above the not so fortunate. We’ll here’s abit of intelligence for you. Wiping out every type of genetic disease won’t happen. Becuase these kind of abnormalities tend to be recessive (mutations can occur spontaneously without the parents being carriers of genetic diseases) and usually occur when both of the parents are carriers, who remain unaffected. So if they abort every child until they conveive a “healthy one” – they will most definitely be a carrier too. The world would be full of carriers, and genetic disease would be born all over again when the carriers “mix”. It sounds so doom and gloom, but it’s not. So let’s say the carriers are wiped out. Left would be a population genetically less diverse than their ancestors and susceptible to other diseases caused by bacteria, viruses and fungi, which continue to grow resistant to antibiotics. Great plan nihilists. So get over yourself, there’s no such thing as a supreme human race because in fact we are de-evolving. And it shouldn’t matter, the world is our oyster

    Having a genetic disease might impact greatly on some people’s lives and shorten their lifespan, but it’s only one aspect of their entire being. To the parents who know their baby may have some genetic abnormality.. I wouldn’t be able to tell them what to do either way, because some parents mightn’t be mature or responsible enough to handle such a child. That’s where genetic counselling comes in.

    And i’ve gone on for long enough, hopefully my opinion has come through clearly and has knocked some sense into some thick-skulled individuals.

  25. Reason:

    It’s selfish to have a child when you know they have an excellent chance of being crippled for life.

    There are plenty of healthy children for adoption who need parents to love them.

    A child doesn’t have to be expelled from your own body for you to love them. Does it?

    Selfish, selfish people.

  26. SFH:

    No, it is not ethical.

    While the duty to alleviate suffering can be a fair topic of debate, there is no license inherent in parenthood that allows one to create suffering. These people were heartless to have a second child.


  27. When is it more than a sperm and ovum? When do you call it “life”?
    It was life to begin with.
    If abortion is unethical, is it then unethical to not get pregnant every time the possibility arises? All my ladies here, every time you have your period, that is an egg, a potential life, dying and it’s remain being thrown away or flushed in the toilet.

    Is it even ethical to test for the condition in the first place?
    How is it not?

    Is it ethical to abort these babies?
    Where would you rather the child be? With God? Or in a world of pain and suffering?

    Also, if you already have a child, even one who does not have the disease, but you know that your next child has a high possibility of having it, it is extremely selfish to have that child. Thee first child now receives little attention from either parent, as all there time must be spent in caring for the deformed child. This leads to poor social skills, feelings of abandonment and neglect, and thoughts of suicide(I speak from experiance).

    If anyone would like to further discuss the topic, my e-mail is beastsoflegand@yahoo.com, I love to argue about anything, and even just join people in arguing against the world

  28. Odd:

    I personally have avoided having children, knowing that I wouldn’t be the best father. I like to stab people-I kid! No, really, I’m a deep sleeper (won’t hear baby crying) and quite forgetful (where did I leave that kid?), and quite intolerant of bullies (your kid hit my kid, that’s why your arm is broken. I feel I’m not up to the task, so I take “preventive measures”. I’d be even more cautious knowing I was carrying such a genetic disease. It’s that simple, to me.

  29. Kaylea:

    Harlequin ichthytosis is much more than just a ‘skin disease’, like psoriasis or a diaper rash. It’s FATAL. It’s PAINFUL. The disease is from too much keratin in the skin, which causes it to harden in to armor-like platesand large fissures and cracks run along the entire body. The skin is so hard and tight, that the baby cannot see or grasp anything with it’s hands. Children with this disease have a very hard time breathing at birth because the hardened skin compomises the movement of the lungs. The hardened skin does not allow for water retention very well, so most baby’s are usually dehydrated. It also does not let heat escape as easily as normal skin, so the babies are often overheated and have heat strokes. The cracked skin is extremely painful and is highly susceptible to infection. There is no cure for this disease, and children born with this disease rarely live past the first hours or days of their birth.

    Considering all of this, do you still think it’s ethical to bring a child into a crippling, pain-filled existence like that? I am a mother to a one-year-old girl, and I would never wish anything that horrible upon an innocent child. I would take every preventative measure available to not have any children if I knew that there was even a remote possiblity that I carried the Harlequin Baby gene, wouldn’t you?

    Why don’t more people consider adoption? The world is already overpopulated with AID-ophaned children, let’s give them a chance at a good life.


  30. I agree with Mike 150% : “Having another child is not only an un-ethical act by the parents but SELFISH AS WELL!”

    It is NOT a couple’s right to have as many children as they wish. A child should be born for the child’s sake, not for the whim of the parent(s).
    If more people thought this way there would be fewer neglected, abandoned, abused(and worse)children in the world (and fewer seriously dysfunctional adults as well!)

    As Keylea says above, if there is even a REMOTE chance of a child having this disease (ARCI) -or similar- then that child should not be conceived.
    To do so is thoughtless, lacks empathy and, above all, is totally selfish! Not only are you condemming it to pain, suffering and a probable early
    death (which might be a blessing), but assuming it survives to maturity (there is a person aged ~25 in UK with this condition aparently) you also
    run the risk of:
    a). perpetuating a disfiguring, recessive gene. (Even if not affected themselves, siblings of an affected individual have a high chance of being a
    carrier – see website attached)
    b) dictating that such a person cannot procreate themselves – this in itself is a whole new ballgame – that of eugenics!

    People need to think seriously about ALL the possible consequences of their actions.
    I rest my case.

  31. JayD:

    URL of article on ARCI
    http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=li-ar

  32. Anon:

    To JayD and Kaylea:

    Isn’t is funny how it’s easy to pass harsh judgement to those whom which you do not identify with.

    The fact is that you DO have a remote chance of having a child born with HI or worse conditions. EVERYONE risks conceiving a child born with mutations, yes even you.

    Rather than spouting baseless rhetoric, why don’t you live by what you preach and declare to never have a child again? Not so easy to do now, is it?

    Get off your high horse and let people live as they please. Passing judgment to others without their consent is the type of thinking that led to eugenics, circumcision, and other atrocities of man.

    Did anyone bother to ask those born with the condition whether they regret having to live with the disorder? Doubtful.

    Also, what’s wrong with being selfish? Selfishness is a natural tendency of man, and it’s also what drives productivity, innovation, and survival.

    All in all, your comments are stupid and insensitive.

  33. James Aitken:

    This question is flawed right from the start. Since when is 25% a high percentage???


  34. NO.

    Assuming the condition is recessive, a “normal” child may actually be a carrier.

  35. Immunology and Genealogy:

    In ways yes, children are born the will ALWAYS be born until the world stops turning… Even perhaps after the world may stop.
    Taking the immunology and genealogy section of course studies gave me an interesting look into this, ‘Perfect baby,’ kind of thing; you know like breeding out the bad leaving only the good in our children? Well our class had a big discussion on this topic, “Designer babies.”

    While looking at this subject let me introduce the infection of Cholera and how cystic fibrosis seemed to have been the genetic answer for this disease even though, today we see this adaptive evolutionary maneuver as a disease as well. Our bodies adapt even in the most unusual ways to uncertain changes?

    Answer me this… Why do people in Developed Countries have allergies while those who live in undeveloped countries do not have allergies? I help you understand. Our production of IgE from our mast cell help us to fight what… pollen? Cause us horrible anaphylactic shock? Maybe but in countries that are undeveloped have, “Bugs” trypanosomes, amoebas, bot flies etc, is actually what our IgE is supposed to attack…These Parasites and bugs are what our mast cells search and destroy. Imagine if scientists find a way to breed out or destroy a designer babies Ige and Mast Cells so they don’t have to worry about a stuffy nose? Great, Huh? Are you sure? Think down the road maybe 20-30 years after IgE and our mast cells have been almost completely obliterated from the gene pool as our designer children are walking around.

    Susie, a child with no IgE, Starts to get sick after playing in the mud making mud pies. They aren’t sure why she is sick so they take her to the doctor. She is now going into shock and they discover she isn’t alone. In her brain and her body they find Balamuthia mandrillaris and many round worms. Her IgE isn’t there so she has no way to fight against these little hijackers. She gets many rounds of antibiotics and many months later she is starting to recover after the attack of the brain eating amoeba and the round worms.

    Jimmy is being checked in the doctor after feeling sick to his stomach and his massive weight loss is traumatic he too has no IgE and unfortunately dies from a tape worm. Think about this if we have no IgE or anyway to fight parasitic invaders in the future what kind of worm is waiting for the right moment to invade our bodies and wipes out most of our population similar to the black plague so long ago…

    Be ready things are changing even if we think it is good to get rid of allergies by getting rid of our IgE and our Mast Cells a worm may be ready to cause another pandemic killing Billions!

    Designer babies aren’t the answer and this is only a scratch to the surface on genetic recombination so parents can pick and chose what they want their child to have. Some choices that can be made now can be the end much later on. To be honest I’m thankful I have a stuffy nose I know that I still have histamines that are ready to kill a mini-invader? I still am learning about what happens when people can pick and chose what genes they want their babies to have and so far it seems scary. I hope people really start noticing that picking your babies hair colour may also be picking a fatal recombination of their genes… I could go on forever with this though.

  36. Meg:

    I don’t think you can accurately compare allergy rates in third world countries to allergy rates in first world countries.

    First, they’re living in very different conditions. One theory is that children in first world countries may not have had their immune systems properly “primed” by exposure to allergens at a young age. They grow up in environments that are too sterile.

    And second, I’m quite sure that allergies in the third world are vastly under-reported. Who cares if you get a runny nose every spring, when you’re worried about getting enough food on your plate? In first world countries we have the luxury of saying, “Gee, little Jimmy seems a tad hyperactive, maybe I should get him tested for allergies.”

    It’s apples and oranges.

    As for the original question, I think it comes down to a matter of individual conscience. But I must say I find the harlequin condition to be quite horrifying, and I personally would get prenatal screening before having a second child. A 25 percent chance would be too high for me.

  37. Christopher:

    Why should the topic of ethics come into play when the decision is purely between the mother and the father? If God wants them to have a child, then they will conceive. If God wants them to have a child with the disease, then it’s His will. All for the glory of the Lord; who are we to question such a thing?

  38. que:

    I’d abort and that’s my personal decision. I don’t believe in God so leave your religion out of this.


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  40. Susan M Khaury:

    I don’t think it is ethical to have a second child when the first one has a debilitating congenital illness.