News Some Parents Choose Genetic Defects

[BobG]

The use of preimplantation genetic diagnosis has some interesting twists. One of the more interesting is that some parents prefer that their children have the same genetic defects as them.

Wanting Babies Like Themselves, Some Parents Choose Genetic Defects

I'm not sure what I think about this practice. I never really considered that some people might intentionally choose to have a dwarf or a deaf child.

 

[Astronuc]

I'm not sure what I think about this practice. I never really considered that some people might intentionally choose to have a dwarf or a deaf child.

I think that is insane and selfish.

 

[devil-fire]

that sounds like it would be vary difficult for parents to justify to their children why they have a disability. "well as you know, iv been deaf since birth and its worked out well for me, so i thought i would give you the same disability...eerr oppertunity"

 

[chroot]

Actually, I read an article published in one of the Best American Science Writing series, about this very topic, deaf people purposefully having deaf children. Like many people, I was originally a little disgusted -- why would someone purposefully bring a disabled child into the world?

Long story short: the article totally changed my mind. After all, being deaf is a fairly benign disability. You can do anything that kids with hearing can do, but you perhaps have to go to special schools.

On the other hand, there's a very large, very welcoming community of deaf and hearing-impaired people -- a subculture, in fact -- and wishing your child to be deaf is no more disgusting that wanting your child to attend your alma mater, or grow up become an integral member of your community.

After all, these deaf parents said that a hearing child would be, essentially, an outsider in his own culture. All of their friends are deaf. All of their friends' kids are deaf. All of the people they know and interact with on a daily basis are deaf. All of their aunts and uncles and grandparents and cousins are deaf. Being the deaf kid in a whole community of hearing people has got to be uncomfortable, but it's no more uncomfortable than being the hearing kid in a whole community of deaf people.

- Warren

 

[BobG]

that sounds like it would be vary difficult for parents to justify to their children why they have a disability. "well as you know, iv been deaf since birth and its worked out well for me, so i thought i would give you the same disability...eerr oppertunity"

Technically, they aren't giving the kid the same disability. They're choosing the embryos with the disability as the one to be born over the different embryo that has no disability. In other words, they're justifying to their children why they were born instead of some other kids with no disabilities.

 

[JasonRox]

Actually, I read an article published in one of the Best American Science Writing series, about this very topic, deaf people purposefully having deaf children. Like many people, I was originally a little disgusted -- why would someone purposefully bring a disabled child into the world?

Long story short: the article totally changed my mind. After all, being deaf is a fairly benign disability. You can do anything that kids with hearing can do, but you perhaps have to go to special schools.

On the other hand, there's a very large, very welcoming community of deaf and hearing-impaired people -- a subculture, in fact -- and wishing your child to be deaf is no more disgusting that wanting your child to attend your alma mater, or grow up become an integral member of your community.

After all, these deaf parents said that a hearing child would be, essentially, an outsider in his own culture. All of their friends are deaf. All of their friends' kids are deaf. All of the people they know and interact with on a daily basis are deaf. All of their aunts and uncles and grandparents and cousins are deaf. Being the deaf kid in a whole community of hearing people has got to be uncomfortable, but it's no more uncomfortable than being the hearing kid in a whole community of deaf people.

- Warren

You really think so?

I've lost a lot of my hearing, and I most likely be deaf one day.

Being in the hearing impaired world, I would say that is the dumbest thing I've heard. I don't know you got convinced, but it sounds like parents are coming up with lame excuses that seem to work on some people.

Think about it.

Let's say I've had heart problems since I was kid. My whole life, community and environment is in the community with those who have heart problems. My friends have heart problems and so on. Because of this, I want my kid to have heart problems too, so we can grow together in the same community and he won't have to feel like an outsider.

Not the same? It sure is. Deaf kid can't talk to "regular" kids because he's deaf, so stays among the deaf. Heart problem kid can't talk to "regular" kids because they might scare him and you know..., so he stays among the heart problems kids.

It's freaking retarded.

Being part of the disabled world, I don't know what kind of sick nut would wish it upon their kids.

EDIT: Read the article, and still think it's absurd. It should be illegal.

Just like Astronuc said, selfishness.

Wish your kids to see the ENTIRE world. You can't do this being small or being deaf. That is reality! I don't go to concerts because that would just speed up the hearing loss, and I don't go to loud bars. My friends used to have loud stereos in their cars, but would turn it down when I got in the car. But I'm happy I can watch movies with friends AT THE THEATRES, and I can basically do anything. I can also be part of the deaf community. Learn sign language, and that's about it. You do NOT need to know what it is like to be deaf to be in a deaf community! Similarly for the small world.

Selfishness, and stupidity at the supremum!

 

[chroot]

Well, a heart defect that may (or will) eventually kill you is of course not the sort of thing one should ever wish upon a child.

Deafness, however, is not really comparable. I'm not deaf, though, so I would certainly defer to the opinions of people who are, but, in my opinion, it seems quite reasonable for a deaf family to wish to have deaf children. They have a language that is, in many respects, more expressive than spoken language. They have special schools as good as any for hearing kids, and they can almost always adapt to attend normal schools, too.

Of course, on the flip side, there's no reason that hearing kids can't learn ASL and participate just as fervently in the deaf community -- but the parents are just worried that their kids won't want to, and will reject their entire community.

On the whole, though, I guess I'd side with the people who say you should never purposefully bring a disabled child into the world, but I have to say that the article I read in Best American Science Writing softened me up quite a bit.

- Warren

 

[chroot]

BTW, I read the article referenced herein, the one from The Washington Post Magazine profiling Candace A. McCullough and Sharon M. Duchesneau.

- Warren

 

[0rthodontist]

I think that is insane and selfish.

I agree 100%. It's unnatural. Maybe a deaf or dwarf person has accumulated a community of those like him or herself, but children grow apart from their parents. They won't spend their whole life among their deaf aunts and uncles. Which is worse, uncomfortable family gatherings, or a serious disability that can severely hinder your opportunities as a person?


Selecting an embryo for deafness and destroying a normal embryo is morally no different from inflicting deafness on a normal embryo and destroying a deaf embryo. The embryos obviously don't care, being embryos. The only thing that matters is the resulting child who must grow up with a particular phenotype. Selecting for a deaf embryo, or deafening a normal embryo, both have the same effect on that child: a disability they will have to live with forever.

 

[Cyrus]

Long story short: the article totally changed my mind. After all, being deaf is a fairly benign disability. You can do anything that kids with hearing can do, but you perhaps have to go to special schools.

Damn man, how can you possibly say something like that? Inflicting deafness on a child is horrible! It's not ok, not even a little. If anything that article should harden you against such actions. That deaf community is being very selfish if they don't welcome a normal child by one of their own.

 

[chroot]

Hey, we're alllowed to have different opinions. Like I said, I'm not deaf, so I would defer to the opinions of people who really have to live with the disability. It just seemed like these parents just didn't want to have children who could never really be part of their own "tribe." I agree with the statement that children grow up, though, and an awkward childhood is worse than a lifetime of adult disability.

- Warren

 

[Moonbear]

Of course, on the flip side, there's no reason that hearing kids can't learn ASL and participate just as fervently in the deaf community -- but the parents are just worried that their kids won't want to, and will reject their entire community.

What reason would they have to reject the entire community? They seem to be projecting the prejudices they experienced onto the entire hearing world rather than realizing it was bad upbringing of the children who probably teased them when they were children. A hearing child raised in a deaf family would grow up around deaf people and would learn to communicate via sign language and wouldn't harbor such prejudices against the deaf community that would lead them to reject them. It also suggests to me that the parents expressing these concerns have failed to adapt to the real world, and instead have insulated themselves within an isolated community. It suggests to me that if they had a deaf child, they would also be selfish enough to not allow them to experience interactions with people outside their more limited community. Deaf people can function well in the real world, but not if you don't go out into it.

The other issue is that some of these congenital diseases, as opposed to something like deafness acquired later in life from damage due to loud noises or injuries, is that they can be linked to other health problems. For example, dwarfism isn't just about being short; if they were just short, I'd say no big deal, pick short over tall or vice versa, but dwarfism is also associated with a whole host of other health problems. http://pediatrics.aappublications.org/cgi/content/full/116/3/771

 

[chroot]

I agree on every point, Moonie.

- Warren

 

[JasonRox]

What reason would they have to reject the entire community? They seem to be projecting the prejudices they experienced onto the entire hearing world rather than realizing it was bad upbringing of the children who probably teased them when they were children. A hearing child raised in a deaf family would grow up around deaf people and would learn to communicate via sign language and wouldn't harbor such prejudices against the deaf community that would lead them to reject them. It also suggests to me that the parents expressing these concerns have failed to adapt to the real world, and instead have insulated themselves within an isolated community. It suggests to me that if they had a deaf child, they would also be selfish enough to not allow them to experience interactions with people outside their more limited community. Deaf people can function well in the real world, but not if you don't go out into it.

The other issue is that some of these congenital diseases, as opposed to something like deafness acquired later in life from damage due to loud noises or injuries, is that they can be linked to other health problems. For example, dwarfism isn't just about being short; if they were just short, I'd say no big deal, pick short over tall or vice versa, but dwarfism is also associated with a whole host of other health problems. http://pediatrics.aappublications.org/cgi/content/full/116/3/771

Well said.

Anyways, I would never wish deafness upon kids of mine. I know of deaf people who wouldn't either. It must be a very selective few deaf people who think like where the rest of the deaf community would think it's insane!

 

[MeJennifer]

Damn man, how can you possibly say something like that? Inflicting deafness on a child is horrible!

Please explain how they inflict deafness.
Are you saying that embryos that will become deaf babies have no right or less right to life that those who are not?

 

[devil-fire]

Are you saying that embryos that will become deaf babies have no right or less right to life that those who are not?

the same could be said for any embryo. including those with significant health complications. i don't think wishing for a child to be born fully able minded and bodyed is the same as wishing a lack of life for those whom are not

 

[turbo]

Well said.

Anyways, I would never wish deafness upon kids of mine. I know of deaf people who wouldn't either. It must be a very selective few deaf people who think like where the rest of the deaf community would think it's insane!

You'd think that a deaf couple would love to give birth to a hearing child, not just for the sake of the child but also for the richness and diversity of their family and their social circle. A child who can hear but is raised by parents with profound deafness could become a valuable bridge between their parents and the larger world. The world is not always accommodating of disabilities and a child who knows that instinctively could be a force for change. I have a disability that restricts my access to public places and I would be damned if I would ever wish it on another person, much less my own child.