'Designer’ babies with made-to-order defects?

[darthkommandant]

Link

The power to create “perfect” designer babies looms over the world of prenatal testing.

But what if doctors started doing the opposite?

Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities — say, deafness or dwarfism — it just means making babies like them.

[darthkommandant]

Oh damw here the full article (accidentally hit submit insted of preview sorry guys)

The power to create “perfect” designer babies looms over the world of prenatal testing.

But what if doctors started doing the opposite?

Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities — say, deafness or dwarfism — it just means making babies like them.

And a recent survey of U.S. clinics that offer embryo screening suggests it’s already happening.

Three percent, or four clinics surveyed, said they have provided the costly, complicated procedure to help families create children with a disability.

Some doctors have denounced the practice; others question whether it’s true. Blogs are abuzz with the news, with armchair critics saying the phenomenon, if real, is taking the concept of designer babies way too far.

“Old fear: designer babies. New fear: deformer babies,” the online magazine Slate wrote, calling it “the deliberate crippling of children.”

But the survey also has led to a debate about the definition of “normal” and inspires a glimpse into deaf and dwarf cultures where many people do not consider themselves disabled.

Cara Reynolds of Collingswood, N.J., who considered embryo screening but now plans to adopt a dwarf baby, is outraged by the criticism.

“You cannot tell me that I cannot have a child who’s going to look like me,” Reynolds said. “It’s just unbelievably presumptuous and they’re playing God.”

Crossing bounds?
Embryo screening, formally called preimplantation genetic diagnosis, is done with in vitro fertilization, when eggs and sperm are mixed in a lab dish and then implanted into the womb. In PGD, before implantation, a cell from a days-old embryo is removed to allow doctors to examine it for genetic defects.

The entire procedure can cost more than $15,000 per try.

The survey asked 415 clinics to participate, 190 responded and 137 said they have provided embryo screening. The most common reason was to detect and discard embryos with abnormalities involving a missing or extra chromosome, which can result in miscarriage or severe and usually fatal birth defects.

The survey is being published in an upcoming print edition of the medical journal Fertility and Sterility. It appeared in the online edition in September. Clinics were asked many questions about PGD, including whether they’d provided it to families “seeking to select an embryo for the presence of a disability.”

“We asked the question because this is an issue that has been raised primarily by bioethicists as something that could happen,” said Susannah Baruch of Johns Hopkins University’s Genetics and Public Policy Center.

“It’s sparking a lot of conversations,” she said. “These are difficult issues for everybody.”

While it’s technologically possible, whether any deaf or dwarf babies have been born as a result of PGD is uncertain. The survey didn’t ask. Participating clinics were promised anonymity, and seven major PGD programs contacted by The Associated Press all said they had never been asked to use the procedure for that purpose.

PGD pioneer Dr. Mark Hughes, who runs a Detroit laboratory that does the screening for many fertility programs nationwide, said he hadn’t heard of the technology being used to select an abnormal embryo until the survey.

“It’s total nonsense,” Hughes said. “It couldn’t possibly be 3 percent of the clinics” doing PGD for this purpose “because we work with them all.”

He said he wouldn’t do the procedure if asked.

“To create a child with a disability because a parent wanted such a thing ... where would you draw the line?” Hughes wondered.

“It’s just unethical and inappropriate, because the purpose of medicine is to diagnose and treat and hopefully cure disease,” he said.

For the same reasons, Yury Verlinsky, another PGD pioneer and director of Chicago’s Reproductive Genetics Institute, said he also would shun those requests.

Dr. Jeffrey Steinberg, whose Fertility Institutes clinics in Los Angeles, Las Vegas and Guadalajara, Mexico, screen embryos for sex selection, said he’d likely consult ethicists if he were ever asked to help couples select a deaf or dwarf baby.

“Clearly it crosses some bounds,” he said.

He’d get a provocative response from University of Minnesota bioethicist Jeffrey Kahn.

“It’s an ethically challenging question and certainly it will trouble people, but I think there are good, thoughtful reasons why people who are deaf or ... dwarves could say, ‘I want a child like me,”’ Kahn said.

The traits are, for some, an important part of their cultural identity.

“If people in a shared culture all have the common clinical defect, then it’s maybe not a defect in the traditional sense,” Kahn said.

More challenging would be if normal-sized parents said they wanted a dwarf child, and yet, he added, “Why is that different from dwarf parents saying, ‘We want only an average-size child?”’

'Fully functional human beings'
Dr. Jamie Grifo of New York University, a past president of the Society for Assisted Reproductive Technology, has done embryo screening for more than a decade and said if it is being used to choose defective embryos, it certainly isn’t common. Cost is one thing. But IVF alone requires weeks of injections with ovary-stimulating drugs and surgery, and couples generally have a less than 50-50 chance of a baby with each IVF-PGD cycle, Grifo said.

Grifo said he wouldn’t oppose embryo screening to select a baby with a genetic defect if the parents have been informed of the pros and cons, risks and benefits.

“In our society, people are so quick to have knee-jerk reactions to something that’s none of their business,” he said.

[HSRTG]

...So is this a yes or a no to catgirls ?

I'm getting mixed readings here.

[Guardsman Bass]

It's a bit on the disturbing side. Although (thankfully) it seems pretty rare, I think it is bad for the same reason that genetic screening for a child with 14 fingers is bad- although the degree of handicap may vary, these parents are deliberately choosing to have children with a handicap that will affect their livelihood (no offense to deaf people or dwarves), most likely in a negative way with regards to the mainstream.

[dragon]

Hum that also means they could create a group of people with low intelligence that will be nothing but second class citizien so they can do the work no one else will, basicly drones.

[wolveraptor]

Well let's not overestimate the powers of this technology. We have to know what parts of the genome affect traits like intelligence. We know there are many, and one's childhood environment plays a role too.

Personally, I think these parents who want "children like themselves" are assholes. Don't they realize they're severely limiting their children's options for the future by deliberately giving them handicaps. It's not just that dwarves face discrimination in the outside world. They also just can't physically do what many of us take for granted every day. The same holds true for the deaf and the blind.

[Darth Wong]

Shouldn't the Hippocratic Oath prevent doctors from deliberately inflicting diseases and disabilities upon others, which is basically what this boils down to?

[Shroom Man 777]

Do geneticists fall under doctors? I mean, the folks doing the petri dishes and all the hoo-hah. Aren't they like, scientists? If so, won't the Hippocratic Oath be inapplicable?

[Spin Echo]

Do geneticists fall under doctors? I mean, the folks doing the petri dishes and all the hoo-hah. Aren't they like, scientists? If so, won't the Hippocratic Oath be inapplicable?

If you're going to be working with patients, either you need to have your MD or being collaborating with someone that has one.

[salm]

Doctors don´t swar the Hippocratic Oath anymore. Nowadays it´s the Declaration of Geneva.

[Admiral Valdemar]

Yeah, the Hippocratic Oath is really not all that appealing in today's world anyway given how simplistic it is (Dr. House made a good quip about it).

Even so, the people doing this would be scientists first and foremost (technically, engineers, since tinkering with the genome is genetic engineering), but like mentioned, a doctor will be there somewhere along the way, likely a fertility one.

[Master of Cards]

Shouldn't the Hippocratic Oath prevent doctors from deliberately inflicting diseases and disabilities upon others, which is basically what this boils down to?

But would the report says
Embryo 1 has deafness
Enmbryo 2 has no known disabiltes
and the parent picks Embryo 1 how is the Doctor to stop them?

[18-Till-I-Die]

As perverse as it sounds, there are people who do this already. I read in an article (here in fact, though it was some years ago) that it was becoming somewhat common for deaf people to permenantly deafen their children so they can be part of the "deaf race" or some such nonsense.

I agree completely with Wolverraptor. There is no excuse for such blatant, insane narcissism. The fact it isnt illegal is, to me, breathtakingly stupid. "I'm deformed and i want my kids to be too!" that (il)logic is so retarded you would almost think it's a joke if it werent true. And no one can possibly say with a straight face that PC shit about handicapped people can do what anyone else can...no, they cant, and anyone with half a brain can see they cant. A blind man cant see, a deaf man cant hear, a dwarf has serious physical defmroities, and so on and so forth. This is driven by pure narcissism.

At least i hope it is.

The only OTHER explaination is that these people are so fucking sullen and bitter about their own problems they want their children, who could be perfectly normal with no physical disabilities at all, to suffer through what they did as some kind of perverse "revenge".

[salm]

As perverse as it sounds, there are people who do this already. I read in an article (here in fact, though it was some years ago) that it was becoming somewhat common for deaf people to permenantly deafen their children so they can be part of the "deaf race" or some such nonsense.

How do they permanently deafen their children?

[18-Till-I-Die]

As perverse as it sounds, there are people who do this already. I read in an article (here in fact, though it was some years ago) that it was becoming somewhat common for deaf people to permenantly deafen their children so they can be part of the "deaf race" or some such nonsense.

How do they permanently deafen their children?

IIRC...they have a surgery done to destroy their hearing.

[salm]

IIRC...they have a surgery done to destroy their hearing.

Wouldn´t they be charged with injuring (whatever the legal term is)? I mean, in the end that´s exactly what they´re doing.

[18-Till-I-Die]

IIRC...they have a surgery done to destroy their hearing.

Wouldn´t they be charged with injuring (whatever the legal term is)? I mean, in the end that´s exactly what they´re doing.

Yes it is what they're doing. But i cant recall if they were charged or not anymore, it was at least a year ago. I believe it went to trial but now i cant recall the outcome.

[18-Till-I-Die]

Oh, Slam, i recall now...

"Parental rights" protects these people, in this country at least. The same way you can refuse medical treatment on the grounds of religious belief, you can do stuff like this.

[Aaron]

These people that are disabling their children are they handicapped from birth or did they become disabled later in life? Because I became disabled later in life and the thought of hurting my children to share my defect makes my skin crawl. Being disabled is the result of unfortunate genetics or an accident, there's no "culture" involved in what I am. I want my children to be happy and healthy so they don't have to put up with the shit I have too. Why someone would choose to put their children at a disadvantage is beyond me and should have their children removed from their care.

[brianeyci]

Well again stealing from House (yes I watch a little of everything, anime, Law and Order, not just Star Trek) the idea is if you give your child a disability, he'll come out stronger for it because he'll have to go through surviving all the shit you went through.

But of course House makes a good point... just how strong do you need to be to survive in this world. Terry Fox may be the ultimate definition of mind over pain, but that doesn't mean you give your children cancer to see them fight it and be stronger for it. For every success story like that there's countless heartbreaking failures. Some people just give up and don't learn to live with their disability at all, and achieve less than what they would have if the disability never existed. So giving your child a disability to tough them up doesn't make sense at all, not from a compassionate viewpoint, and certainly not from a logical viewpoint. So there's a one in a million chance he'll become a Terry Fox, wow more likely he'll wash out and you'll make his life more miserable.

[18-Till-I-Die]

These people that are disabling their children are they handicapped from birth or did they become disabled later in life? Because I became disabled later in life and the thought of hurting my children to share my defect makes my skin crawl. Being disabled is the result of unfortunate genetics or an accident, there's no "culture" involved in what I am. I want my children to be happy and healthy so they don't have to put up with the shit I have too. Why someone would choose to put their children at a disadvantage is beyond me and should have their children removed from their care.

I honestly dont know weather they were born deaf or were handicapped later in life. Not that it would matter, but i dont recall the discussion getting that far, further than the general agreement that these people were sickos.

But yeah i agree with you completely, "makes my skin crawl" was my first reaction when i heard about it too. It's insane but...AFAIK it's legal, unfortunately.

[Darth Wong]

Well again stealing from House (yes I watch a little of everything, anime, Law and Order, not just Star Trek) the idea is if you give your child a disability, he'll come out stronger for it because he'll have to go through surviving all the shit you went through.

Ah, so it's a mutated version of the old "beating your kids will build character" bullshit.

But of course House makes a good point... just how strong do you need to be to survive in this world. Terry Fox may be the ultimate definition of mind over pain, but that doesn't mean you give your children cancer to see them fight it and be stronger for it. For every success story like that there's countless heartbreaking failures.

Even the success stories can be heartbreaking failures. Terry Fox died of his cancer.

Some people just give up and don't learn to live with their disability at all, and achieve less than what they would have if the disability never existed.

Even the successes are usually measured in terms of the person achieving what a normal-functioning person would achieve, which is not exactly a net gain.

[18-Till-I-Die]

There is also too much in our culture telling people that "it doesnt matter" if you're disabled.

Yes it fucking does matter!

These people have serious deformities and phsyiacl problems, being a cripple or having no eyes or no hearing is not "just likle everyone else" and my head hurts when i hear people say that.

It's not even self esteem, something else we encourage too much of in modern Western culture. Self esteem implies some actual, logical ability or talent that one can be proud of. What aboutbeing blind or having no legs should make us proud? How is that "brave"? How is that not a problem.

It's a kind of artificial self esteem that is extremely dangerous. Because when that house of cards falls, it can crush you.

[Molyneux]

I don't see any ethical dilemma to altering an embryo to give it enhanced abilities or even capabilities completely absent in a normal human being.

This, however, turns my stomach. I can't understand how it could be viewed as NOT a crime to deliberately and permanently decrease the functional level of a child.

[Aaron]

Well again stealing from House (yes I watch a little of everything, anime, Law and Order, not just Star Trek) the idea is if you give your child a disability, he'll come out stronger for it because he'll have to go through surviving all the shit you went through.

Well if I magically give my kids my disabilities not only will they have to overcome the problems I have to but they will have to live with the fact that their father crippled them for life, just so he could feel better. How are they going to feel about that? I imagine that's going to create some pretty bitter people, I'd be goddamn pissed if my parents pulled that kind of shit on me.