birth defects: lets get specific

[The Great Hippo]

This is quite thought provoking, philosophically.

Consider two methods of ensuring a genetic trait:

(1) A number of eggs are fertilised and tested. If any have the desired trait (eg deafness) they are implanted and brought to term. When this kid grows up and says to their parents 'I really hate being deaf, why the hell did you choose this life for me?' and the parents can reply just as TGH says: 'If we hadn't deliberately chosen the deaf embryo you wouldn't be here at all - so suck it up.'

(2) A single egg is fertilised and the genes manipulated by a retrovirus to break a gene crucial to developing hearing. When this kid grows up and says to their parents 'I really hate being deaf, why the hell did you choose this life for me?' the parents can only say '...that's what we wanted', and the kid may go on to reply: 'you selfish pricks!'

You're glossing over the fact that a child with a different set of genes is a different child. Whether or not manipulating the DNA after conception qualifies as a violation of bodily rights is up for debate--at what point does a human have the right not to be violated? At what point is it human?--but I don't think anybody but the craziest of crazies would be prepared to say that our right to bodily autonomy begins before we've been conceived.

[morriswalters]

You're glossing over the fact that a child with a different set of genes is a different child. Whether or not manipulating the DNA after conception qualifies as a violation of bodily rights is up for debate--at what point does a human have the right not to be violated? At what point is it human?--but I don't think anybody but the craziest of crazies would be prepared to say that our right to bodily autonomy begins before we've been conceived.

The only important child is the one who is born. In effect manipulating things to produce a child who is deaf is no different then making a child deaf after birth, it's only different in timing. This is vanity pure and simple, these women want a mirror of themselves. Deafness is a liability. Anyone who wishes to argue the point is an idiot. You can live with it and even prosper but you are not whole. We live in a society that has the ability and wealth to enable us to make the world safer and more accessible for people with disabilities but the disabilities are still disabilities. Your last statement would imply that anything we do to the egg or the sperm before conception is okay, is that what you mean to say?

[Azrael]

This is vanity pure and simple...

So what's it called when two people with the same genetic predisposition to a disadvantageous trait conceive the old fashioned way? Still vanity? Or are we willing to allow that they might love each other and wish to procreate?

Where's the line? If it's not OK to do it the old fashioned way, that's eugenics. Good luck justifying that one. If it it OK to do it the old fashioned way, but not ok to use science, what's the moral or ethical differentiator?

[morriswalters]

The vanity is in wanting a mirror reflection of themselves, without regard to the impact on the child. Choosing a partner and having a child by normal methods is one thing, genetic manipulation is something else. The first may show poor judgment but has to remain in the realm of acceptable behavior. This is because both the people are presumed competent to make a choice, that the pair may produce a child with a disability is a secondary effect. The direct genetic manipulation to reproduce a deaf child would be a primary effect or an overt act, no different then make a child deaf with surgery.

As a matter of full disclosure I should say that I am against designer babies of any type. The only genetic manipulations that I would allow would be purely medical. I suppose though that we won't be happy until to be successful in society you have to be 6 foot 2 inches tall with a square jaw and a steely blue eyes, blond hair and a vapid intellect, or 6 foot tall with large breasts, long blond hair, a wasp figure and no intellect.

[Azrael]

The vanity is in wanting a mirror reflection of themselves, without regard to the impact on the child. Choosing a partner and having a child by normal methods is one thing, genetic manipulation is something else. The first may show poor judgment but has to remain in the realm of acceptable behavior. This is because both the people are presumed competent to make a choice, that the pair may produce a child with a disability is a secondary effect

To cite the relevant article, since it seems you didn't read it:

Sharon Duchesneau and Candy McCullough, who have both been deaf since birth, were turned down by a series of sperm banks they approached looking for a donor suffering from congenital deafness.

The couple, who have been together for eight years, then approached a family friend who was totally deaf, and had five generations of deafness in his family. He donated sperm which was used to impregnate Sharon Duchesneau.

The direct genetic manipulation to reproduce a deaf child would be a primary effect or an overt act, no different then make a child deaf with surgery.

First off, those two actions are simply not the same and Hippo has covered why quite well already on this page. Second, there is no genetic manipulation in this case, making your appeal to a non-analogous moral outrage miss the mark on both counts. I'm no fan of direct gene manipulation either, but that's entirely irrelevant to this discussion.

So I'm back to the original question: Why is it morally or ethically wrong for those two consenting adults to have procreated?

[infernovia]

Well, obviously, they think being deaf is not a birth defect (although how it becomes a strength is questionable). Or that a deaf child would be more lovable than a non-deaf ones.

As, it is said, the bards of the Greeks would stab out their eyes [citation needed].

[morriswalters]

I read it, the argument on genetics was a natural extension, my apologies if it strayed too far off target. As I stated their method showed poor judgment. If you wish I will argue on two levels. The first economic.

Society in general spends time and money on making the world as accessible as possible to people with disabilities. From SAP broadcasts, support for schools, and the thousand of other things that we do. I don't begrudge these as an individual since the people who use them did not choose to be disabled. Making a conscious choice is adding to the burden already existing. That is unless you believe that deafness is not a deficit for a human. Are they prepared to go it alone since they made a conscious choice? Will they forgo those tools we give for people forced by random chance to bear weight of their disability? Or will they choose to freeload?

The second argument bears more to the point. Irrespective of their desires, as the child matures at some point he will become independent of them. By their choice, not his, they have removed part of his human birthright and they can't put it back. This is not hair color or sex but something that is an important part of being human. They have increased his level of risk for certain activities and forbade him others entirely. And he will have to live with it no matter how he feels about it. They didn't say let's have a child and if he's normal we will love him and if he's deaf we will love him. They said, let's increase the odds that he will be a deaf mini us. You put whatever spin you wish on that, I say it's vanity of the worst kind. And as such immoral, not because a deaf child is immoral, because the selfish choice they made to have him.

[Azrael]

They said, let's increase the odds that he will be a deaf mini us ... I say it's vanity of the worst kind. And as such immoral, not because a deaf child is immoral, because the selfish choice they made...

So it's immoral because of motivations that you have assigned to them. Recursive argument is recursive.

[morriswalters]

This section from the article in question.

While she was pregnant, Ms Duchesneau said: "It would be nice to have a deaf child who is the same as us.

"I think that would be a wonderful experience.

"You know, if we can have that chance, why not take it?

"A hearing baby would be a blessing. A deaf baby would be a special blessing."

This quote along with the fact that several sperm banks turned them down, seems to me to give a pretty good indication. They left very little to chance did, wouldn't you say. While one can be certain of an others motivations, assuming no misquote it seems to me pretty straight forward. Let's look at what they have done. They bred for a specific trait. They wanted a deaf child and apparently they have done it twice. What have they denied their child. I'll state a partial list, no music, no team sports using verbal cues(almost all of them), limited communication skills(losing all verbal cuing implied by tone of voice and volume, not to mention limited by range of vision), I'll stop there. What have they gained for what they have taken away? Their stated justification.

They told the Washington Post they believed they would make better parents to a deaf child, because they would be better able to guide them.

And

Ms McCullough added: "Some people look at it like 'Oh my gosh, you shouldn't have a child who has a disability'.

But you know, black people have harder lives. Why shouldn't people be able to go ahead and pick a black donor if that's what they want?

"They should have that option. They can feel related to that culture, still bonded with that culture.

They certainly seem to realize that that life will be harder for the child but they seem to think that deafness is a cultural or racial characteristic. Normal in a specific population. But at no time in the article did I read that they believed their child's life would be better for their choice.

[The Great Hippo]

The only important child is the one who is born.

Then why are you obsessing over the imaginary child who was born not deaf?

Deafness is a liability. Anyone who wishes to argue the point is an idiot. You can live with it and even prosper but you are not whole.

I wear glasses. I've had the opportunity to get laser eye surgery--I turned it down because I much prefer wearing glasses. Am I not whole? Does the fact that I decided to live with this disability make me an idiot? Do you feel comfortable designating me as 'incomplete'? Does the fact that, were I to have children, I'd much prefer them to also be near-sighted strike you as amoral?

Your last statement would imply that anything we do to the egg or the sperm before conception is okay, is that what you mean to say?

I said it was another moral discussion. I'd contend that yes, we have the right to modify an egg and sperm shortly before or after conception--I don't think human life or human rights begin at that point. But that's neither here nor there; ultimately, wherever human rights start is irrelevant, so long as we agree that human rights do not start before conception.

The vanity is in wanting a mirror reflection of themselves, without regard to the impact on the child. Choosing a partner and having a child by normal methods is one thing, genetic manipulation is something else. The first may show poor judgment but has to remain in the realm of acceptable behavior. This is because both the people are presumed competent to make a choice, that the pair may produce a child with a disability is a secondary effect. The direct genetic manipulation to reproduce a deaf child would be a primary effect or an overt act, no different then make a child deaf with surgery.

This is arbitrary. Two people for whom deafness is a dominant trait will not possibly have a deaf child. They will have a deaf child. So, which is it--do you think they shouldn't be allowed to breed (thereby putting you in the eugenics camp)? Or is it magically okay for them to breed because they have the ability to do it without interference (putting you in the Naturalistic Fallacy camp)?

Your problem here seems to amount to the fact that these people have choices you perceive as being superior (they could chose to not have a deaf child), and the fact that they're not picking those choices strikes you as amoral. Of course, everyone always has these sorts of choices--a fertile heterosexual couple with a deaf-dominant trait in both could choose to adopt, or seek out alternative means to have a non-deaf child. Why is this particular situation magically wrong but all the others magically not?

As a matter of full disclosure I should say that I am against designer babies of any type. The only genetic manipulations that I would allow would be purely medical. I suppose though that we won't be happy until to be successful in society you have to be 6 foot 2 inches tall with a square jaw and a steely blue eyes, blond hair and a vapid intellect, or 6 foot tall with large breasts, long blond hair, a wasp figure and no intellect.

'Purely medical' is a poor designation. There is no clear and crisp line between medical concerns and sociological ones. We all agree that harlequin-type ichthyosis is an abhorrent syndrome and we should completely eliminate it; one reason for this is that there are not many suffers of this affliction who are clamoring for us to stop trying to eliminate it. Yet many autistics would rather you not eliminate autism. The same goes for deafness.

I think the most important thing here is what a significant number of people with the affliction you're talking about are saying. Listening to the people who possess the traits you are trying to eliminate is very important. Traits and disabilities that no one wants are safe to remove; ones that people identify with--ones that people want to keep--are not.

They certainly seem to realize that that life will be harder for the child but they seem to think that deafness is a cultural or racial characteristic. Normal in a specific population. But at no time in the article did I read that they believed their child's life would be better for their choice.

Having parents who connect with you more deeply does not correlate with an improvement in your general quality of life?

[morriswalters]

I chose not to quote, I hope you can follow.

The reason we discuss these things is for the next time not the one just past.

Take your glasses off and throw them away permanently. Do the same for your children. Would you class yourself as limited in that situation? Your children? I'll speak for me, I would be close to blind. Glasses are inherently limiting but better than no glasses. Pick a better analogy. Profound deafness is permanent and most likely irreversible.

I believe human life starts at conception, so we'll have to agree to disagree. Human rights are a legal fiction, ephemeral and fleeting. I simply don't like tinkering with dynamite. It has a bad habit of blowing up in your face. This particular thing has great potential in that respect.

I don't belong in any camp but mine, I just may share common ideas. However I don't propose to get the law any further involved with the relationship between a man and a women. There is no rational way to do it. And given the limitations of the natural process there is no need. It happens too slowly. Society has a hard enough time adapting to change as it is. Let science push the process too hard and the results are unpredictable and may be dangerous.

Superior is a touchy word. But in this case I won't scream. There is a price for everything. They have chosen to have their child pay a price he won't be able to negotiate. Do you believe that if he had been born with the ability to hear that he would willingly give up the capability? But in the end it doesn't matter what I believe, it will be what their son believes. If they tell him. Can't you see the conversation.

" Son we chose for you to be deaf so you could be like us and our culture. If we hadn't done that you you wouldn't be here, another child who might not have been deaf would have been here. Your special."

Would you buy that?

There will always be gray areas, there's no way to eliminate them. And you have to cross those bridges as you get to them. In the end that's a dialog society is having right now. But neither can the disabled have it both ways. Either they are or they aren't. If they don't think they are then why should I have to accommodate them in any way. That's a question the disabled have to answer, not me.

Child raising is a complex endeavor. I'd say that kids are best served when we give them the broadest range of choices and support them while they learn how to make good ones. Love is not enough.

[The Great Hippo]

Are you going to address A) how your position differs from that of eugenics, and B) how selecting DNA with 'deaf-dominance' at all correlates with the act of inflicting deafness on a child (they didn't chose to make their child deaf; they chose a deaf child to raise)?

Also, nothing is truly 'reversible', but profound deafness is treatable. My metaphor still stands.

[thc]

First off, those two actions are simply not the same and Hippo has covered why quite well already on this page.

For certain definitions of "not" and "the same". On the other hand, the outcome is the same, and so it is the same. Consequentialism.

What is the difference between creating a deaf baby and making a baby deaf after it is born?

You and TGH have both tried to pretend that there are not strong analogies in these scenario by making completely untenable philosophical assumptions. You've completely ignored the fact that there is a prominent school of ethical thought that states that any caveat you can think of doesn't matter. The outcome is the same, and that's what matters.

B) how selecting DNA with 'deaf-dominance' at all correlates with the act of inflicting deafness on a child

If you're implying that because deafness is not guaranteed by selective breeding, then roll a dice. If it's a 6, make 'em deaf! If that's not what you meant, see above.

Now let's go down the slippery slope:

1) I want my baby to become mentally retarded by imbibing copious amounts of alcohol.
2) I want to have a baby that is definitely not gay.
3) I want to have a quadriplegic baby.

At the very least these scenarios show that the issue is not as clear as you are trying to make it out to be.

[The Great Hippo]

What is the difference between creating a deaf baby and making a baby deaf after it is born?

Violation of physical autonomy, basically. I perceive our right to not be modified against our wills as a fundamental, inalienable human right--we violate it only under certain circumstances where it's necessary or ridiculously sensible (parents can often act as referees, determining a child's consent when the child is incapable--"Should we fix this cleft lip despite not having the infant's consent?" - "Yes, because this is something the child would want done were they capable of making this decision.").

Besides that distinct violation, I have no problem inflicting deafness on a child. I don't think that's what this situation is, of course.

You and TGH have both tried to pretend that there are not strong analogies in these scenario by making completely untenable philosophical assumptions. You've completely ignored the fact that there is a prominent school of ethical thought that states that any caveat you can think of doesn't matter. The outcome is the same, and that's what matters.

The outcome is not the same. Not in this case. The outcome of the parents choosing to select a different sperm donor is an entirely different child with an entirely different father. Again: They did not inflict deafness on a child. They chose a deaf child to raise. The child's state was already defined genetically. I wouldn't actually have a problem with changing the child's DNA before conception, but they didn't even go that far.

1) I want my baby to become mentally retarded by imbibing copious amounts of alcohol.

There are other risks associated with this.

2) I want to have a baby that is definitely not gay.

I have no problem with that. Would you rather have parents with gay children who don't want gay children? I also don't have any problem with parents who want a gay child.

3) I want to have a quadriplegic baby.

Do you think there are many quadriplegics who would claim that their disability is a positive influence in their lives? Many quadriplegics who would insist that we preserve their disability rather than cure it? Again: Simple test. Ask the people with the disability what they think.

At the very least these scenarios show that the issue is not as clear as you are trying to make it out to be.

They pretty much are.

[Dark567]

I think there are two distinct actions here that aren't really being considered separately, but need to be.

A.) Selecting a mate based on possessing a single genetic quality(in this case blindness)

B.) Two people that possessing a trait(which is often considered undesirable) procreating.

Action 'A' is the one morriswalters is claiming unethical. Banning action 'B' would be what qualifies as eugenics.

[morriswalters]

Actually I did answer the question twice, however I'll do so again. I said they showed poor judgment but that as long as it was done naturally without explicit manipulation other than selecting the sperm donor then I give it a pass. I don't know how to regulate it without going to places I'd rather avoid. But I consider it a moral failure.

Express manipulation of the genetic material(gene splicing for example) to produce deafness is an overt act. The ground is much clearer here. While I have no desire to stand between two consenting adults but I have no compunctions about this. Changing genetic material to produce the trait you want when it would have not otherwise have done so is no different then cutting the nerve in an otherwise normal baby. This is a step we should be loathe to take without a very specific need, and then only with oversight.

You state that "they didn't "choose" to make their child deaf; they chose a deaf child to raise." I assume by this that you mean that they picked a child from all the permutations of children that they could have had. So by your reasoning this child would have been deaf anyway. So they did nothing. That statement is meaningless to me. They loaded the dice. They chose to raise the child they bore, and manipulated the circumstances to increase the likelihood that that child would be deaf. Children don't exist as a statistical ghost of some kind. The genes are blueprints which can make them exist and we manipulate those blueprints by choosing who we reproduce with.

[Azrael]

... On the other hand, the outcome is the same, and so it is the same. Consequentialism.

You and TGH have both tried to pretend that there are not strong analogies in these scenario by making completely untenable philosophical assumptions. You've completely ignored the fact that there is a prominent school of ethical thought that states that any caveat you can think of doesn't matter. The outcome is the same, and that's what matters.

You're saying it's an untenable philosophical assumption to ... assume that consequentialism - that the ends always justify the means - is not always correct? Now that's an untenable position. Ethics unfortunately is not math, and one train of ethical derivation is not suitable to all cases. I'd wager that just about everyone realizes that the ends don't always justify the means and that consequentialism isn't a universal ethical truth.

In this case, strictly applied consequentialism yields obviously problematic results: All child bearing partnerships should be chosen to produce the genetically superior child. Even on a small scale, it would be unethical for two people needing glasses (using morris' example) to breed. It's eugenics masking as philosophy.

[Dark567]

You're saying it's an untenable philosophical assumption to ... assume that consequentialism - that the ends always justify the means - is not always correct? Now that's an untenable position. Ethics unfortunately is not math, and one train of ethical derivation is not suitable to all cases. I'd wager that just about everyone realizes that the ends don't always justify the means and that consequentialism isn't a universal ethical truth.

~24% of ethicists disagree(they believe that the ends always justify the means and consequentialism is a universal truth.)(http://philpapers.org/surveys/results.pl) Along with that, the majority of philosophers believe that ethics is like math and that one train of ethical derivation is suitable for all cases. Pluralists are minority(<10%) of philosophers, although it has been trending upward recently.

EDIT: Clearly there isn't any consensus around any ethical theory, and the fact that we disagree on which theory is correct is going to lead us to have different conclusions on this issue. The point I was making is that clearly there are not an insignificant number of people that believe the ends always justify the means. (The arguably most prominent ethicist in the world is of that opinion, http://en.wikipedia.org/wiki/Peter_Singer)

[morriswalters]

In this case, strictly applied consequentialism yields obviously problematic results: All child bearing partnerships should be chosen to produce the genetically superior child. Even on a small scale, it would be unethical for two people needing glasses (using morris' example) to breed. It's eugenics masking as philosophy.

Just for the purpose of clarity I didn't say that people who needed glasses who bred for that trait were unethical. The Great Hippo asked and I never answered. I simply said that bad vision was a defect. Something I personally can attest to. I thought the example was trivial and still do.

Edited for brevity

[thc]

You're saying it's an untenable philosophical assumption to ... assume that consequentialism - that the ends always justify the means - is not always correct? Now that's an untenable position. Ethics unfortunately is not math, and one train of ethical derivation is not suitable to all cases. I'd wager that just about everyone realizes that the ends don't always justify the means and that consequentialism isn't a universal ethical truth.

My point was not that consequentialism is correct, but that you are not necessarily correct. And while consequence-based ethics are not a universal truth, consequences do matter A LOT to most people in their own moral calculus.

In this case, strictly applied consequentialism yields obviously problematic results: All child bearing partnerships should be chosen to produce the genetically superior child. Even on a small scale, it would be unethical for two people needing glasses (using morris' example) to breed. It's eugenics masking as philosophy.

That doesn't follow. When you do consequentialism, you need to sum over all the participants involved. In this case, the happiness of the parents. Since bad vision is an easily corrected "defect" it hardly plays a large part in the equation.

Do you think there are many quadriplegics who would claim that their disability is a positive influence in their lives? Many quadriplegics who would insist that we preserve their disability rather than cure it? Again: Simple test. Ask the people with the disability what they think.

I bet you I could find a small percentage of quadriplegics who would claim otherwise.