IVF Deaf Babies Not Welcome in America
As much as I hate to be the bearer of bad news that will enrage and hurt Deaf people…
I’ve been doing some research in this area and came across this article from the United Kingdom. Four infertility clinics have claimed that they were asked to select “defective” embryos by disabled parents who want “disabled” children. (http://infertility.suite101.com/article.cfm/embryo_screening) This horrified many people who never anticipated that in-vitro fertilization would be used for this purpose. Most people don’t understand that many disabled parents don’t see themselves as being defective and take pride in being unique. Unfortunately society doesn’t accept the deliberate creation of disabled children, hence they are passing this bill which bans selection of embryos with defective genetic conditions. With this, society is making a statement about the devaluation of its disabled members.
One can search the internet for the aftermath of an article regarding two deaf lesbians who used artificial insemination to create a designer deaf baby earlier this decade here in Maryland. As no sperm clinic used deaf donors, a Deaf family friend donated his. The Washington Post author wrote it in a neutral tone, but the follow up articles reflected the wrath of outraged Americans and spawned numerous debates regarding the ethics of this act.
This is a very slippery slope … in practicing eugenics. First they will remove the defective embryos. Then they may start discussing “undesirable” races…. perhaps attempting to remove those considered unacceptable.
That’s how the eugenics movement in the early 1900’s in America got started. Involuntary sterilizations of undesirables, including the mentally retarded, mentally ill, which were later expanded to include criminals, juveniles, and the poor. This program was admired, then Adolf Hitler adopted it and the rest is history.
But guess what? It’s already being practiced in most in-vitro fertilization clinics in America:
Yet Susannah A. Baruch and colleagues at the Genetics and Public Policy Center at Johns Hopkins University recently surveyed 190 American P.G.D. clinics, and found that 3 percent reported having intentionally used P.G.D. “to select an embryo for the presence of a disability.”
Still, most providers of P.G.D. find such requests unacceptable. Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. “In general, one of the prime dictates of parenting is to make a better world for our children,” he said in an interview. “Dwarfism and deafness are not the norm.” Dr. Yury Verlinsky of the Reproductive Genetics Institute in Chicago, who also refuses these requests, said, “If we make a diagnostic tool, the purpose is to avoid disease.” Wanting Babies Like Themselves, Some Parents Choose Genetic Defects – New York Times
He said he wouldn’t do the procedure if asked……
“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. Some ponder ‘designer’ babies with Mom or Dad’s defective genes – USATODAY.com
Since business is a very large part of society, citizen responsibilities toward it in regard to intentionally creating deaf children should be examined. It is my contention that designing disabled offspring is unethical on the grounds that it causes undue injury to businesses without their permission in any form. Copyright Springer Science+Business Media, Inc. 2007 Deaf by Design: A Business Argument Against Engineering Disabled Offspring
Yes, you still can get an IVF Deaf embryo, but you will have to look harder for an IVF clinic willing to perform this prodecure since most refuse.
Reference: Parliament: Deaf Embryo selection to be made illegal (Grumpy Old Deafies)
As much as I hate to be the bearer of bad news that will enrage and hurt Deaf people…
I’ve been doing some research in this area and came across this article from the United Kingdom. Four infertility clinics have claimed that they were asked to select “defective” embryos by disabled parents who want “disabled” children. (http://infertility.suite101.com/article.cfm/embryo_screening) This horrified many people who never anticipated that in-vitro fertilization would be used for this purpose. Most people don’t understand that many disabled parents don’t see themselves as being defective and take pride in being unique. Unfortunately society doesn’t accept the deliberate creation of disabled children, hence they are passing this bill which bans selection of embryos with defective genetic conditions. With this, society is making a statement about the devaluation of its disabled members.
One can search the internet for the aftermath of an article regarding two deaf lesbians who used artificial insemination to create a designer deaf baby earlier this decade here in Maryland. As no sperm clinic used deaf donors, a Deaf family friend donated his. The Washington Post author wrote it in a neutral tone, but the follow up articles reflected the wrath of outraged Americans and spawned numerous debates regarding the ethics of this act.
This is a very slippery slope … in practicing eugenics. First they will remove the defective embryos. Then they may start discussing “undesirable” races…. perhaps attempting to remove those considered unacceptable.
That’s how the eugenics movement in the early 1900’s in America got started. Involuntary sterilizations of undesirables, including the mentally retarded, mentally ill, which were later expanded to include criminals, juveniles, and the poor. This program was admired, then Adolf Hitler adopted it and the rest is history.
But guess what? It’s already being practiced in most in-vitro fertilization clinics in America:
Yet Susannah A. Baruch and colleagues at the Genetics and Public Policy Center at Johns Hopkins University recently surveyed 190 American P.G.D. clinics, and found that 3 percent reported having intentionally used P.G.D. “to select an embryo for the presence of a disability.”
Still, most providers of P.G.D. find such requests unacceptable. Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. “In general, one of the prime dictates of parenting is to make a better world for our children,” he said in an interview. “Dwarfism and deafness are not the norm.” Dr. Yury Verlinsky of the Reproductive Genetics Institute in Chicago, who also refuses these requests, said, “If we make a diagnostic tool, the purpose is to avoid disease.” Wanting Babies Like Themselves, Some Parents Choose Genetic Defects – New York Times
He said he wouldn’t do the procedure if asked……
“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. Some ponder ‘designer’ babies with Mom or Dad’s defective genes – USATODAY.com
Since business is a very large part of society, citizen responsibilities toward it in regard to intentionally creating deaf children should be examined. It is my contention that designing disabled offspring is unethical on the grounds that it causes undue injury to businesses without their permission in any form. Copyright Springer Science+Business Media, Inc. 2007 Deaf by Design: A Business Argument Against Engineering Disabled Offspring
Yes, you still can get an IVF Deaf embryo, but you will have to look harder for an IVF clinic willing to perform this prodecure since most refuse.
Reference: Parliament: Deaf Embryo selection to be made illegal (Grumpy Old Deafies)
November 26th, 2007 at 6:15 pm
That is one reason people have had problems adopting deaf babies from Estonia and the formerly Russian ares.
November 26th, 2007 at 6:35 pm
Interesting topic, considering that deafness is NOT seen as a disability by the *D*eaf culture, but it is seen as defective disability by the hearing community, so therefore the actions are used to “erase” this defective gene.
Well, the genes mutate all the time, so there will always be “imperfect” babies in each succeeding generation.
November 26th, 2007 at 6:42 pm
Hi,
Designing babies does not always guarntee good children. You may design a baby, the baby grows up to be a drug user or a rebellious child that may give you lots of heartache and pain. It is a very risky venue. I would much rather get a healthy baby and hope that he/or she will grow up leading a productive and happy life. I was hoping to have deaf children but ended up having hearing children. They have been a blessing and i really enjoy having them. They also have opened my eyes to many things. I guess i was intended to raise hearing children and in hindsight, im happy to have them. You either get a deaf or hearing child, you can raise them in a bilingual environment and they have “deaf identity”. Supposedly if a deaf couple designs a deaf baby, this baby grows up being a freeloader, takes drugs or has other problems, how would they feel? They may reject the child and throw him/her to foster care becuz they “chose” this child whereas if a child was born simply healthy (either deaf or hearing), they may be more inclined to work harder and place their faith along in the way when things go bad at times. Parenting is not a perfect art.
November 26th, 2007 at 6:44 pm
Mishka,
Touchy and sensitive topic, but you wrote about it so well. I’m a big fan of your writing and research. Keep up the great work.
~ LaRonda
November 26th, 2007 at 7:02 pm
MZ,
Hey, I agree with LaRonda about your effective writing. You did it very well. About selecting the babies, I would very much like to leave it alone to the nature! You see, I got a beautiful son who has mildly down’s syndrome. I have no regret for having him, even though I wondered why I ended up having him. Like, the commenter Michele, she was intended to have hearing children. I guess I was intended to have three hearing children with one condition of down’s sydrome. I m glad to have them all!
November 26th, 2007 at 7:10 pm
Definitely a very sticky sticky subject. IMO I have to ask myself: Why can’t we all accept and be thankful with what we have? If God choose that I have hearing baby, or deaf baby, etc. we should be thankful for what he gives us.
Remeber this well known quote: “be careful for what you wish for…..”
I would never design my own baby. I like the suprises. I also think that this method is like “playing God”. With that comes risks of messing with gene pool. I know there are others out there that probably disagrees with me. It’s expected.
November 26th, 2007 at 7:10 pm
Thanks, LaRonda and Deafk.
Yes, this is a very sticky and touchy topic : /
A good friend of mine who has a grown son with Down’s Syndrome said that he enriched her life tremendously. However many embryos and fetuses with the extra chromosome indicating this genetic defect are eliminated, either by selective selection or abortion. This trend is very tragic because people with this syndrome are generally very happy and pleasant people, really a joy to be with.
Unfortunately we do see more and more fetuses and embryos destroyed due to genetic abnormalities. This disturbing movement doesn’t bear well for the future of mankind, indicating a growing intolerance for diversity among people. We will always experience genetic mutations. In fact, it is healthy to have a wide range of variations within one species. Why play God?
November 26th, 2007 at 7:37 pm
I am on your side. Take pride in being unique is too precious to go and I don’t agree with in-vitro fertilization that would be used for Deafies. I wouldn’t mind, if it’s used for diabetes type one, cancer, etc….
I have envy with your beautiful writing skills. Maybe you can be my teacher.
November 26th, 2007 at 8:36 pm
This is preciously a reason why we need to pass a federal law to prevent an uneducated majority from taking away minorty’s rights (voting on gay marriage ban is an example) and to protect a beauty of imperfections that can be critically appreciated and enriched by some.
Yes, I remember reading that Washington Post article. It was real disheartening to see that many mean-spirited, insensitive, ignorant majority’s remarks, wanting to turn a deaf baby into a hearing baby.
Unfortunately, as your article proves, the such ignorance and insenstivity still exists nowadays or even grows more evil like PGD clinics. Perhaps, we need to organize a protest or rally at the such clinics perhaps allying with drawves and other supportive communities!
Thanks for posting this eye-opening IVF article,
Bob RRR
November 26th, 2007 at 9:05 pm
There is nothing inherently defective about deafness per se. Everything depends on the context in which the deafness occurs.
Is it undesirable that most of the world is made up of oceans and part of it land? We need the oceans as a vital part of the ecosystem.
In a similar way, we need variation in the human race. All humans are united in their ability to perceive and handle abstractions. That’s the fundamental essence of being human, and deaf people are not defective in that respect, and are therefore fundamentally *not* defective.
Deaf people are also not mobility-impaired. An argument can be made that a human being who is visual (i.e., deaf) and not mobility impaired, and who has the linguistic ability to function normally (e.g., with ASL) is not a disabled person.
November 26th, 2007 at 9:32 pm
Could a deaf person with Connetxin 26 gene who may be sperm donor be able to produce a deaf baby for a deaf woman or a hearing woman who has Connetixin 26 gene through IVF? Is it 100 percent guaranteed? Or is it a gamble risk that the baby may be either hearing or deaf? I am just curious as to how the IVF people can find out as Connetixin 26 is detected through DNA testing which takes a long time and im sure not all deaf sperm donor would know if they carry the Connetixin 26 gene or not as not everyone is tested for it. So how would the IVF clinic know? As the remaining 50 percent of the deaf genes are not yet discovered and identified by science. Also how does one know if the babyw will be born deaf or have dwarfism? Science is not exact and many things could turn out differently than expected. The IVF can then be lawfully sued if they failed their promise to the parents if the baby was not born deaf.
November 26th, 2007 at 10:18 pm
I was told that Deaf applicants are rejected from the sperm donor clinics.
I do recollect reading about a case reported by New York Times on a couple upset that multiple genetic screening failed to detect the deafness their son was born with. I don’t know what happened to that case, though.
My understanding that genetic testing are routinely used during the IVF process. However, I don’t know if the genetic tests for Connexin 26 and Connexin 30 are included in that group or must be ordered specifically. Good question.
November 26th, 2007 at 10:34 pm
I know embryos are screened for infatile Tay-Sachs disease within first 8 cells. This one disease I don’t mind screened for – it is a serious problem for the Eastern Europe Jewish (Ashkenazi) descent people and the French Canadians of southeast Quebec as well as the Cajuns of Louisiana
If screened for disabilities like deafness or dwarfness, this is where I object.
November 26th, 2007 at 10:40 pm
The genetic screening tests for deafness during IVF are:
Deafness, Recessive – (GJB2 Connexin 26)
Deafness, Recessive – (GJB6 Connexin 30)
Deafness, Recessive (DFBN1)
Retinitis Pigmentosa (RHO)
Retinitis Pigmentosa adRP10 (IMPDH1)
Retinitis Pigmentosa X-linked (RPGR)
Waardenburg Syndrome Type II (MITF)
Waardenburg Syndrome-I/III (PAX3)
November 26th, 2007 at 10:52 pm
You deaf people are selfish. Why on earth would you want your child to be deprived of the wonderful sense of hearing?
November 26th, 2007 at 11:07 pm
Response to #15 ‘You are sick’: You hearing people are selfish. Why on earth would you want your child to be deprived of the wonderful sense of deaf?
November 26th, 2007 at 11:17 pm
Great informative article, Mishka Zena!
Have you also noticed a pattern in history that repeats itself every 100 years or so? That’s a thought to be considered that we all (both hearing and Deaf) should learn from past mistakes but most of them never seem to!
November 26th, 2007 at 11:19 pm
P.S. “You are sick” – I am glad I am Deaf and not a sick, self-destructive, selfish, hearing person like you!
November 27th, 2007 at 12:02 am
MZ,
A thoughtfully written article.
To response #15, “You are sick”, you know not what you speak of. The hearing world is far more selfish and I may add, far more self-serving, to its own interests than trying to help those with limited hearing. A 270 million hearing population to only about 31 million deaf, phooey, what are we deaf to you? You and your idea of eugenics based on “deprivation”, crikey. The world would be a pretty bland place if everybody were the same, that is, all hearing.
November 27th, 2007 at 2:12 am
Well written post, MZ but it is a morbid one!
Its a funny world to live in..hearing parents are allowed to make choices (to make decision to insert CI in their Deaf babies or children for example) but the Deaf can’t make a choice to have a Deaf baby? Disability is a label that is determined by different groups of people. What would you call a hearing person who knows no sign language that is stuck in a place of Deafies ? Handicapped ? Communication disabled? It is all a matter of perspective.
November 27th, 2007 at 2:12 am
In every species there are natural variations. The human species is no different…we have our variants and most of them are not predictable nor selectable.
Yet we are the only species that is able to select (or de-select) for the few traits that science is able to test for. It was interesting that deafness is among these few traits, and it shows what priority scientists gave it. Would we think inherited deafness is as tragic as Tay-Sachs disease? No. But hearing people and scientists apparently do.
It gives us pause for thought. We as a people are apparently so undesirable that it is possible to sterilize, kill or abort us just because of our trait. History has proven that many times. Yet we have also proven that we are an intelligent, independent and useful people.
As an ethical society, we should not be selecting for any reason whatsoever.
In healthy relationships we regard each child as a blessing just as they are created. With total acceptance of each other, we increase our humanity and the chance for each child to become a great person.
November 27th, 2007 at 10:42 am
If we let this happen, the next step will be to ban gay and lesbian genes. And then risky genes for schizophrenia, alcholism, and ADHD genes and so on. Perhaps we need to coperate with other marginal groups like gay/lesbian, dwarfs, disabled groups and so on. I am sure they also are frightened by those bills.
November 27th, 2007 at 1:06 pm
Yes, this is a morbid subject, but deaf people need to be aware of the restrictions. It’s scary, too. What if they aren’t able to conceive naturally and all their deaf genes are dominant? Then the IVF clinics will not help them conceive? Doesn’t that violate their rights under ADA if they are being discriminated because of their hereditary deafness? That is an angle to explore.
The contrast of the views the hearing culture and the deaf culture couldn’t be more stark like this. Hearing people see deafness a profound disability, but deaf culture embrace it as a treasured trait that mark them unique. They don’t feel handicapped at all.
It’s really too bad that hearing people don’t see how well deaf people have adapted to not being able to hear, using their eyes and cultivating a strong vibrant culture with a beautiful, deeply expressive language. They do not feel disabled.
Contacting other minority groups, especially the short people, may be an excellent idea. Gay people will be very concerned if the loci for gayness have been detected, because they may be wiped out, too. Nature designs us not to be homogenous. We are not any less valuable because we are different. *shaking head sadly*
November 27th, 2007 at 1:22 pm
This is an eye-opener. What a complicated world we live in now that we have more and more choices. Like you, I feel we need to be careful about picking and choosing who will be born. All of us whether hearing or deaf/Deaf. Enlightening!!
November 27th, 2007 at 7:48 pm
I think one angle we need to pursue with this is the quality of life. Our quality of life is NOT bad. It may be bad at times, but that’s only because of our treatment from others.
I agree, we need to form alliances with other minority groups over this. People may disagree with deaf people wanting to have deaf children, but this is not fatal, nor does it affect the quality of life as much as people think.
November 27th, 2007 at 10:38 pm
Economics is invariably THE reason for eliminating the undesired traits. Employers and the federal government find deaf people economically burdenous because the accommodation of interpreting services, closed captioning, cochlear implant is preposterously expensive.
People living much longer to 80, 90, 100 means that the government will lose money. What does it mean when 30 million person are lazy or obsese?
Cyclically, history repeats — more than 70 years ago in the Hitlerian Germany!
November 27th, 2007 at 11:15 pm
Ms. Boutcher gets it right! Raising a deaf child is exhoribant. State schools require as much as ten times or more the funding to operate compared to the public schools. Interpreters cost a fortune. Finding a good paying job outside the deaf education system is notoriously difficult for the average deaf person. Cochlear implants cost 50K each and AVT thousands of dollars a year for at least five years.
To wish for a deaf child who must struggle harder against the odds to achieve successfully in a hearing world is selfish. You expect the tax payers to foot the bill for your deaf child’s expensive special education and interpreters? The financial responsibility should be 100% yours because you want a designer deaf baby!
Most of the IVF clinics are correct for rejecting the inane request for a deaf embryo.
November 28th, 2007 at 2:40 pm
Anon, what you are saying is that it’s ok to discriminate against Deaf people because they are too expensive for the society. Has humanity been reduced to dollars?
While we are at that, lets throw out deaf babies, blind babies, developmentally challenged babies…Hmm, let’s not stop at that. Lets kill these disabled children and adults. They cost too much money. Wait a min.. Muslim people? These terrorists, who have cost economic damages and massacre of innocent people, are usually from Muslim countries. Let’s kill them all, too. What about gay people? They are blamed for spreading AIDS, robbing lives and costing billions of dollars in treating this disease. Throw them out! Don’t forget the criminals in the prisons (dripping sarcasm)
Your eugenic thinking scare me. You have no humanity in your blood. People do have the right to be different.
November 28th, 2007 at 11:48 pm
By the way, anon, you totally misunderstood Jean! Please read more carefully.
November 29th, 2007 at 5:30 pm
[...] U.S. genetic selection discussion in Mishka Zena http://blog.deafread.com/mishkazena/2007/11/26/ivf-deaf-babies-not-welcome-in-america/ [...]
November 30th, 2007 at 11:14 am
Just would like an honest answer from you all:
I can see that many, not all, of the people here (myself included) are delighted to have a Deaf baby…but what if you had a baby that was both deaf and blind. Would you want to let that baby stay deafblind or would you work towards having his/her vision treated? Let’s go further: if a simple surgical procedure is all that is needed to fix this baby’s vision, would you go for it? The baby will still be Deaf but can see. Would you go for that or would you just let the baby be deafblind?
Just curious.
December 3rd, 2007 at 5:57 pm
[...] Mishka Zena: IVF Deaf Babies Not Welcome in America [...]
August 1st, 2008 at 9:15 pm
“When the Nazis came for the communists,
I remained silent; I was not a communist.
When they locked up the social democrats,
I remained silent; I was not a social democrat.
When they came for the trade unionists,
I did not speak out; I was not a trade unionist.
When they came for the Jews,
I remained silent; I wasn’t a Jew.
When they came for me,
there was no one left to speak out.”
-Martin Niemöller
Note that in the 6 January 1946 speech Niemöller specifically mentioned “the sick, the so-called incurables”; see the translation by Harold Marcuse
“Euthanasia” Centers*map
T-4 Euthanasia Program
Cardinal Clemens von Galen speech Against Euthanasia Sunday, August 3, 1941
American Journal of Psychiatry January 2006. “Nazi Euthanasia of the Mentally Ill at Hadamar” by Rael D. Strous, M.D.
August 31st, 2008 at 8:32 am
Yonatan Says:
November 30th, 2007 at 11:14 am
Just would like an honest answer from you all:
I can see that many, not all, of the people here (myself included) are delighted to have a Deaf baby…but what if you had a baby that was both deaf and blind. Would you want to let that baby stay deafblind or would you work towards having his/her vision treated? Let’s go further: if a simple surgical procedure is all that is needed to fix this baby’s vision, would you go for it? The baby will still be Deaf but can see. Would you go for that or would you just let the baby be deafblind?
Just curious.
———————————–
Hi Yonatan, would you believe that my partner and I (both of us being gay) would be so delighted and thrilled to have a Deafblind baby. We would have no problems with that at all… my parter is Deafblind himself and I am Deaf and my background is Deafblind relaying interpreting as well as being an social education. We had the experience of looking after a teen who was diagnosed with vision impairment, torrettes, and ADHD and even though the school found him very challenging. We loved every moment with this young man. Having a child, we would not take the option of correcting via medial intervention because the baby would be “normal” to us and of course we would expose our child to experience tactile environment, information and provide lots of educational imput as any parents and what better couple than us were sign langauge and Deafblind communication is our native language and we are so fluent with no hang ups.
Craig