Is it ethical?

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.

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?

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

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

“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.

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.

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.

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.

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.

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

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.

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!

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.

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.

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

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.

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

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

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.

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?

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