Refusal for IVF Deaf Embryos A Violation of ADA?
Pondering……
Here in America, we recognize the status of disabled and deaf people as being equal to their hearing and non-disabled peers.
As defined by the Americans with Disabilities Act, public and private entities may not discriminate against an individual or entity because of the known disability of a person with whom the individual or entity has a relationship. What is the ADA: Definition of Disability
As I discussed in an earlier post, most in-vitro fertilization centers refuse to implant an embryo that contains the deaf gene.
Think about this scenario, we have families with deafness running through many generation. In these families, deafness is inherent in the genetic make-up.
A deaf couple might seek the services of a fertility clinic if they are unable to conceive on their own. Due to the nature of the genes of each individual, all their embryos carry the homozygous deaf genes. The couple is incapable of producing hearing embryos.
The IVF clinic refuses to implant these deaf embryos. Considering ADA, would this be construed as a violation of the Deaf people’s rights to bear children?
I don’t think this genetic dilemma with deaf couples has been explored legally yet. Genetic testing of IVF embryos is a fairly new procedure, with new genetic testing popping up every year.
Will ADA protect the deaf parents in this case………. or not?
References:
What is the ADA: Definition of Disability
http://blog.deafread.com/mishkazena/2007/11/26/ivf-deaf-babies-not-welcome-in-america/
Pondering……
Here in America, we recognize the status of disabled and deaf people as being equal to their hearing and non-disabled peers.
As defined by the Americans with Disabilities Act, public and private entities may not discriminate against an individual or entity because of the known disability of a person with whom the individual or entity has a relationship. What is the ADA: Definition of Disability
As I discussed in an earlier post, most in-vitro fertilization centers refuse to implant an embryo that contains the deaf gene.
Think about this scenario, we have families with deafness running through many generation. In these families, deafness is inherent in the genetic make-up.
A deaf couple might seek the services of a fertility clinic if they are unable to conceive on their own. Due to the nature of the genes of each individual, all their embryos carry the homozygous deaf genes. The couple is incapable of producing hearing embryos.
The IVF clinic refuses to implant these deaf embryos. Considering ADA, would this be construed as a violation of the Deaf people’s rights to bear children?
I don’t think this genetic dilemma with deaf couples has been explored legally yet. Genetic testing of IVF embryos is a fairly new procedure, with new genetic testing popping up every year.
Will ADA protect the deaf parents in this case………. or not?
References:
What is the ADA: Definition of Disability
http://blog.deafread.com/mishkazena/2007/11/26/ivf-deaf-babies-not-welcome-in-america/
December 4th, 2007 at 2:00 pm
My feeling is that courts would rule in favor of the deaf couple. I don’t think anyone considers deafness a disability on a par with, say, Down Syndrome.
In this case I think the law would favor the rights of the individual over what some might call the “social good”.
December 4th, 2007 at 3:00 pm
This is thought-provoking! It’s a legal mess waiting to happen, I’m sure. Once we begin to make laws about who has the right to be born it’s a slippery slope. We’re only at the beginning with infertility clinics. Eugenics will open up more doors and more choices.
December 4th, 2007 at 3:40 pm
Is genetic testing automatically done on all IVF embryos? Can’t potential parents just tell the IVF center that they don’t want genetic testing done – they’ll take whatever the good Lord gives them just like if they conceived naturally?
December 4th, 2007 at 3:45 pm
Wow…..this is slippery. If IVF clinics are allowed to eliminate embryos because they have a “deaf gene” (or however it works) – how long will it be before they allow elimination on basis of gender?
December 4th, 2007 at 5:39 pm
Yup, Mishka, a scary, slippery-slope topic and one that beehooves us to be ever vigilant by not taking the ADA for granted. We need to give support to our brethren in the UK and everywhere else this might arise because, if we don’t, who knows how soon this horror will reach our shores and the halls of Congress!
December 4th, 2007 at 7:27 pm
My daughter has a gene that guarantees she will have a deaf or hard of hearing child (passed through female mitochondria). If she were to need IVF in the future, that would present a heck of a situation.
December 4th, 2007 at 11:46 pm
Elizabeth,
It is my understanding that during the Jordan administration, a geneticist came to Gallaudet to administer DNA testings amongst students in 1989 or thereabouts. (I do not know if she is still there.) Would you, by any chance, know what was the true motive of the geneticist for testing students? Would you think that she collected the names of testées who were found to be deaf gene carriers? What I know for a fact is that a male student narrated about his experience about undertaking the DNA testing. He said that the geneticist measured his head, hands, legs, feet.
December 4th, 2007 at 11:58 pm
P.S.
I forgot to add that Sorenson Genome also does
the DNA testing.
December 5th, 2007 at 3:30 am
It is indeed a slippery slope. I say, screw genetic testing if the couples know they have the deaf gene. If I went through that, I would be outraged, because really… deafness is one of the most common birth ‘defects’ in America.
How about just granting them their child without a fuss. Last I checked, being deaf doesn’t inhibit you.
December 28th, 2007 at 12:49 pm
[...] Mishka Zena ponders the genetic rights of deaf and hard of hearing people and the Americans with Disabilities Act on her blog: Refusal of IVF Deaf Embryos a Violation of the ADA? [...]
March 14th, 2008 at 9:51 am
“My feeling is that courts would rule in favor of the deaf couple. I don’t think anyone considers deafness a disability on a par with, say, Down Syndrome.”
it is still a clear disability. theres no way around it. just because its not as hobbling as being blind doesn’t mean its not a deficiency. to purposely choose such a embryo over a healthy one is immoral. whats best for the child to be born is to be born with as full a set of tools as possible. its rather bizarre that deaf people have come to want to protect their disability with such fervor that they would inflict deafness on their child. it also seems to be an odd distortion of reality where the value of hearing has been dismissed by those who have no concept of what they are dismissing. to deprive your child of the sounds of a human voice, the intonation, the sounds of nature, beautiful music, the sounds of every day life is child abuse. but i guess how could deaf people truly value what they cannot even begin to fathom? sound is invisible. and as much as folks will try to tell deaf folks its just like vibration.. its really not. they are just being kind. and thats the problem with the deaf community, they’ve taken the kindness and the white lies that come with it and mistaken it for something else.