Is it Selfish to Intentionally Make a Deaf Child?
By Shane Feldman on Fri 28 Dec 2007 |
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God no longer has absolute authority in determining which child is born deaf and which is not. Some deaf parents have taken matters into their own hands, intentionally creating deaf children. This has led to an international uproar, as well as the proposal of legislation to prevent the selection of or creation of deaf babies.
The McCullough and Duchesneau Controversy
The most visible and oft-quoted case of a couple actively hoping to create deaf children was from, “A World of Their Own,” by Liza Mundy for The Washington Post Magazine about two deaf lesbians, Candace McCullough and Sharon Duchesneau, who found a deaf man with five generations of deafness willing to donate his sperm to Sharon, who has four generations of deafness on her mother’s side of the family. A genetic counselor informed them that they had a 50-50 chance of their child being deaf. The outcome was the successful conception of two children, both deaf.
The ensuing public outcry demanded that these parents justify their decision. Many characterized McCullough and Duchesneau as selfish, creating children to meet their own needs rather than thinking about the children’s future opportunities. Following this logic, McCullough and Duchesneau could be just as selfish as parents who decide to abort their fetuses who have Down Syndrome. According to a New York Times article, “about 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.”
The McCullough and Duchesneau decision is unique and controversial because they deliberately sought out a multiple-generation deaf donor to increase their chances of conceiving a deaf child and revealed their desires in an international publication. Unbeknownst to many hearing people, some deaf couples, consciously or unconsciously, seek partners who may increase their likelihood of conceiving a deaf child. According to the authors of “Attitudes of Deaf Individuals Towards Genetic Testing” in the American Journal of Medical Genetics, “Perhaps the most significant finding of our survey is that regardless of their cultural orientation, more than half of our respondents expressed an interest in considering the results of genetic testing when they select a marriage partner.” The research did not indicate if the partners wanted to obtain a test to increase or decrease the likelihood of conceiving a deaf child.
In Vitro Fertilization (IVF) and Genetic Counseling
The incidence of deaf couples who actively intend to create deaf children either by in vitro fertilization (IVF) or choosing high-incidence spouses/partners to conceive their children is probably a very small percentage and takes place on an infinitesimal scale (the culturally deaf community is quite small, arguably estimated at one million in the U.S).
In a 1998 study by Anna Middleton, a genetic counselor at Addenbrooke’s Hospital in Cambridge, UK, 87 deaf activists were polled. Middleton found that “16% of participants said that they would consider having prenatal diagnosis and, of these, 29% said that they would prefer to have deaf children.” After criticism of her questionnaire concerning her small sample size, according to a Nature article, “Genetics: Deaf By Design”, Middleton polled a larger sample of hard of hearing, hearing people with deaf family members, and profoundly deaf people — two-thirds of whom were not identified as culturally Deaf, according to the study. Nature reports that Middleton learned:
Across the deaf group, about one in five said they would consider prenatal genetic testing, mostly to prepare for the birth of a hearing or a deaf child.
Few of the deaf respondents said they would consider abortion, and in most of those cases, their choice was actually for a hearing child. None of those who said they would abort a deaf fetus was culturally Deaf. But three deaf people said they would consider aborting a fetus if it could hear. Two of these were culturally Deaf.
Nature shares the story of a deaf couple who was “devastated” to learn from a genetic counselor that they had a low likelihood of producing deaf offspring. Regardless of whom deaf people choose as their partner, they may harbor hopes of giving birth to a deaf child. A BBC television show, “My Family - Want a Deaf Baby“, covered the trials and tribulations of a deaf couple, Claire and Paul, about to give birth to a baby that they conceived together. They hope to have a deaf baby. When an audiologist reveals that the baby is deaf, the couple reacts with giddy delight. In Nature, Ted Supalla of the University of Rochester (who has hearing children and a hearing wife) shares a sentiment that some in the culture, like Claire and Paul, can relate to:
I don’t see anything wrong with [the preference to have deaf children]. I see it as being similar to how parents determine the religion or education of their child.
The U.K. Human Fertilisation and Embryology Bill
It has been five years since the controversial Mundy article roiled American and international readers. On the other side of the Atlantic, a recently proposed legislation in the United Kingdom, called the Human Fertilisation and Embryology Bill, has a section, 14(4)(9), calling for the rejection of any embryo containing genes that would cause a disability, including deafness. Ironically, language elsewhere in the bill proposes prohibiting the selection of an embryo on the basis of its gender. It is possible that the Mundy article, along with other similar stories in the United States, influenced the proposed legislation and current discussion. The explanatory notes to the bill, in section 109 states:
Clause 14(4) contains a provision that relates to the provisions on embryo testing (see note on clause 11). New sections 13(8) to (11) amend the 1990 Act to make it a condition of a treatment licence that embryos that are known to have an abnormality (including a gender-related abnormality) are not to be preferred to embryos not known to have such an abnormality. The same restriction is also applied to the selection of persons as gamete or embryo donors. This would prevent similar situations to cases, outside the UK, where positive selection of deaf donors in order deliberately to [sic] result in a deaf child have been reported.
Baroness Deech, a Lord in the UK, followed up with this point in the ensuing debate:
I hope that your Lordships will be pleased that the deliberate choice of an embryo that is, for example, likely to be deaf will be prevented by Clause 14.
The proposed UK Human Fertilisation and Embryology Bill focuses solely on the selection process during IVF conceptions, which is not the same process in which McCullough and Duchesneau conceived their children. However, there may be IVF decisions that have not been publicized in the United States, according to “Genetic testing of embryos: practices and perspectives of US in vitro fertilization clinics”:
Three percent of IVF–PGD [Preimplantation Genetic Diagnosis] clinics report having provided PGD to couples who seek to use PGD to select an embryo for the presence of a disability.
In addition, Nature reports that The Infertility Treatment Authority for the state of Victoria in Australia said it would not allow a couple hoping for a deaf child to use an IVF preimplantation test. The practice of choosing children who share their parent’s disability may be most prevalent among the deaf and dwarf communities since both were the focus of an Associated Press article about selection of embryos that would create disabled children.
Francis Murphy, a leading UK deaf advocate said in a Times Online article, “If choice of embryos for implantation is to be given to citizens in general, and if hearing and other people are allowed to choose embryos that will be ‘like them’, sharing the same characteristics, language and culture, then we believe that deaf people should have the same right.” Is he right that the focus should be on preserving individual rights, not having the government impose rules on the actions of a “pinch of sand on a beach”?
Furthermore, Nature concludes:
Given these diverse viewpoints, some experts argue that it is unfair to focus on the minority of the culturally Deaf who say they would consider aborting a hearing fetus. “It is offensive to keep harping on about this scenario. While many deaf parents may harbour a preference for having deaf children, the data suggest that the majority would never consider doing it,” says Barbara Biesecker, a genetic counselor at the National Human Genome Research Institute in Bethesda.
The BDA Response to Proposed UK Bill
The British Deaf Association (BDA) drafted a poignant, but flimsy response to the authors of the proposed Human Fertilisation and Embryology Bill. The response outlined realistic situations where deaf couples would be put in an unfair position that may or may not be the intention of the Bill. For example, if the legislation is approved, as is, Alison Bryan, an attorney in the United Kingdom, speculates that 14(4)(9) of the Bill could have the following repercussions:
Say e.g. you have a deaf gene in your family, and for whatever reason needed assisted fertilisation in order to get pregnant. If the embryos developed were known be deaf, a female would not be allowed to be made pregnant by a deaf embryo, and a hearing embryo must always be picked. This could also mean that deaf people are prohibited from partaking in assistance with fertilisation (donation of eggs, sperm).
However, the BDA makes the following poor counterargument to the Bill:
Impact of genetic screening and selection against deafness and the negative effect on the remaining population of deaf people. By codifying into law a preference for selecting embryos that are genetically associated with hearing, potential deaf people who would have otherwise been born will not have an opportunity to exist. Over time this is likely to bring about a less diverse society, including the potential for the decline or demise of BSL. Smaller numbers of deaf people overall may result in less communication access and fewer services offered to this population.
In essence, the BDA posits that deaf people be allowed to produce more deaf people for the purpose of maintaining communication access and services provided to the community. No group should be subsidized by any government for the purpose of ensuring its survival. An endangered list for animals is sufficient; governments are not obligated to create a list of endangered cultures and languages around the world and work to save them.
The BDA also responds to common arguments, which are two-fold: ‘right to an open future’ argument, in which a child should be provided the greatest number of opportunities possible and the ‘conditions of exit’ argument, which argues that deaf people are isolated from mainstream society. The latter argument is valid, because signing deaf people interact with hearing society on a daily basis, and do so without disruption. However, the former argument may be an optimistic assessment of the opportunities available to deaf and hard of hearing people.
A number of avenues are closed for the deaf person, mostly at no fault of the deaf person’s. Most of the problems are rooted in attitudes and perceptions. Claiming that deaf people face a number of opportunities that is only slightly less than hearing people is a mistaken assumption. Making such a bold statement could undermine deaf advocates’ efforts to improve the quality of our lives through future legislation that continues to protect our rights. Some deaf people may prefer to, selfishly, improve their opportunities and quality of lives rather than preserve a culture that will likely dwindle to numbers which renders it extremely difficult to support the culture.
The Future of Genetic Screening and Culture
It is possible that unborn children in utero could be subject to genetic screening for deafness in the near future. While fetal genetic screening and rejection/abortion of embryos may not be explicitly banned in the United States (which is a mistake the United Kingdom is seemingly leaning toward), the smart move for any legislator concerned about this issue is to simply require screening for deaf genes in embryos. This will then leave it up to parents to make a decision similar to what is occurring today with Down Syndrome screening. George F. Will of Newsweek, who has a son with Down Syndrome, reacted with anger towards the implementation of Down Syndrome screening, arguing:
But what is antiseptically called “screening” for Down syndrome is, much more often than not, a search-and-destroy mission: At least 85 percent of pregnancies in which Down syndrome is diagnosed are ended by abortions.
While hearing people will likely opt to avoid any perceived hardship by rejecting embryos or even aborting fetuses, the quandary facing a deaf person is much more complex. Part two of this blog will analyze the decision facing deaf parents who contemplate intentionally creating a deaf child or selecting an embryo based on the possibility that the result will be a deaf child.
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Your blog makes me think of people against the abortion of fetuses, because they wish to see additional people with Down Syndrome. According to the same New York Times article you cite:
Others admit freely to a selfish motive for their new activism [against abortion]. “If all these people terminate babies with Down syndrome, there won’t be programs, there won’t be acceptance or tolerance,” said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. “I want opportunities for my son. I don’t know if that’s right or wrong, but I do.”
That viewpoint, and others in the article, elicted a number of letters to the New York Times, many of which express opinions that could also be applied to the question of deafness. Here’s one interesting position taken by doctoral candidate at the University of Oxford (England):
Fighting Down syndrome with prenatal screening does not “border on eugenics.” It is a “search and destroy mission” on the disease, not on a category of citizens.
Perhaps people would advance a similar viewpoint on embryos with a likelihood of deafness.
To me, the whole issue is not about preserving a culture and language. It’s about trampling people’s rights to have children that possibly could be deaf.
What gives the government the right to dictate what children we can and cannot have? They put in a disclaimer that none of us can choose gender, but deafness has to be eliminated? Deafness is very much like being a gay person, or a person of color.
It’s a social stigma. That’s all it is. And you’re right, Shane… BDA’s response is pretty flimsy. :( BDA needs to focus on the fact that the government is trying to eliminate undesirables on the basis of social stigmas… and that is wrong.
I hope that if this kind of thing ever happens here in the US, NAD is ready to address that.
I am not sure how you can perceive this issue as preserving a culture or language. Being deaf is a handicap, unlike being black, or irish, or speaking french. When it comes to life, I don’t think humans should try to play God. If a child is born deaf, than that child is to be celebrated as much as any other child. But for us to chose whether a child should have down syndrome or be deaf, or smart, or blonde…this is not our place.
I think you need to look into your social stigma a little further and discover that especially in this case, the only ones with a social stigma are the parents who choose to have only a deaf child.
I think you need to go back and re-read my comment more carefully.
So, does that mean that the govts (fed, state, local) or insurance companies are not obligated to provide financial assistance or help provide access (e.g. interpreters, special education needs, etc) to those who purposely plan on producing a child with a disability? You may have the right to produce a child with the same disability condition(s) which requires more money to support, then does that mean that the govts or insurances have that right to decide on not to support that child financially for services, medical needs and what not related to the disability?
Just asking so don’t get all hot under the collar folks.
McConnell,
That’s a great question. If the foundation of disability-related laws was created based on the premise that a person was conceived by natural chance or an “act of God”, then the government may have a legal basis to pull the rug from under those who intentionally make deaf children. However, using this logic, could the government also refuse welfare to women who intentionally conceive a large number of children?
Shane, to answer your question, I shout a resounding YES. Yes, these parents who want to make their children deaf are selfish. Yes, they should be rounded up and prodded violently with a branding iron until they suddenly realize they are not gods. To feel pain is human, after all.
Parents in general want the best for their kids, and that includes doing whatever they can to ensure their child has the tools to survive and thrive. If the said child doesn’t have one of those tools, do the best they can to ensure the child has substitue tools such as cued speech, SIMCOM, and ASL (thrown in for the rabid sign language lovers foaming at the mouth).
Anonymous,
ASL is not just “a communication tool” as you put it, it’s a real and viable language. It is recognized as an other cultural languages that supports and connects to the cultural traits, traditions, and so forth…
Secondly, if you so believe that D/deaf parents are selfish in their beliefs that they can provide everything they can by showing them their own true instinct into surviving the world by example, then I also dispute that you’re also saying H/hearing parents are as much selfish into creating a false stimulation via technology for the sake of allowing it (the child) to fit into the social norm. The current trend of thinking nowadays is to respect and listen to a child’s preference mode of communicating, instead of instantly deciding. This, I believe, is a greater outcome for the entire family in allowing Deaf children to have both opportunities instead of your resounding one-sided viewpoint.
you said deaf couple wants a deaf baby. Okay..hearing couple gave birth to a deaf baby. They got upset. They want a hearing baby…is they selfish to drill baby’s skull and put a machine in then a child could be a hearing like their parents.
I said…they are SELFISH!!!!!!
Nope! Many people do the “designer babies” anyway. No big deal about it!
This couple just do the opposite unlike what other people design their own babies.
RLM
I’m for the right for people to have deaf children intentionally because its our American freedom to do so.
Is it really an American freedom to do so? That is the question of this blog, which you and McConnell are missing.
The point is, does the government have the right to dictate what kind of features our children has to have and not have?
And where do we draw the line?
That’s the point and big question here.
DP, how am I “missing” this blog? I raised a secondary question to Shane’s question.
If a couple or parents choose to act upon their reproductive right to purposely create a child with a disability via IVF, for example, should the govt, state, insurance (what have you) deny you (or the child) any kind of assistance because doing so could may in fact require more money in the end?
Shane said that in part two, he will discuss that question. You’re jumping the gun here, McConnell.
In part 2 he didn’t say anything about upcoming discussion about govt/state/insurance opting not to support “deaf parents who contemplate intentionally creating a deaf child or selecting an embryo based on the possibility that the result will be a deaf child.” The question I’m posing I don’t see it as “jumping the gun” unless you know for a fact that Shane will indeed discuss this in part 2. Regardless, I am raising this question now.
A Deaf Pundit,
McConnell raises an excellent question that deserves a thoughtful response. Part two of my blog may overlap with some comments made in response to this blog but that shouldn’t stop anyone from discussing them.
The question for those who would select for a deaf child is this– would you think it was OK to select for a hearing child? For me, the answer is “no.” Therefore, the answer is “no” for both questions. I happen to be hearing, my children were born deaf. To select by eliminating them would be a choice I would never make. While I have striven to make things easier for my deaf children by allowing them hearing via a cochlear implant, if that was not available we would have loved them no less. For our family, elimination of anyone would not be a moral choice.
However, I do not have any problem with genetic counseling for couples, as that would allow choices to be made prior to a child being “on the way.” If someone is wanting to adopt to avoid potential deadly diseases or difficulties, that would be a choice that is within the realm of morally acceptable, in my personal opinion.
Your attitude is great - but let me ask you one pertinent question here - would you have the same attitude you have now having raised two deaf kids BEFORE you had them? If you were unable to have a child and then you went to a fertility clinic and was told that this embryo is deaf and that one is hearing - I truly believe that you would have gone for the hearing one without a moment of consideration?
That is the problem the deaf community in the UK is campaigning against here - preferring nature to take its course rather than have a designer baby…
Brian, I would like to believe that I would have NOT chosen to know anything about any embryos, had I chosen to go for fertility issues. I have moral beliefs about embryos that existed prior to having given birth to any kids. I knew a woman who insisted that all embryos created be utilized, and thus they only had 3 created, two of which were able to be born (twins). She didn’t want any destroyed. If I carried a genetic mutation for a deadly disease which caused death in childhood or something, I think I would have chosen to adopt rather than potentially spread this, but I would not eliminate a child already on the way.
Of course deafness is not like a deadly disease. Even those of us who have implanted our kids know that they were born healthy and, unless some cause of the deafness is discovered which has other manifestations, there is nothing physically which would be a reason to avoid having children like them. We are done with having kids, now that we have 4 (and are incredibly busy) but we had our 4th knowing that we were not yet sure of our likelihood of having another deaf child and that it was possible to have another one.
I would always prefer nature take its course regarding children. And, if that is a concern (due to disease), there are many children who need homes and can be adopted. I have no problem with the idea of genetic counseling– making people aware of the genetic possibilities, and I do believe that this (along with modern medicine) is enough “playing God.”
Amen to that! Thanks for putting the record straight here.
I would have no problem with the designer babies as long as the parents do it with consideration of the children’s lives… that the parents are not doing the designing for themselves. That is why I think psychological counseling should be provided to the parents who intend to design a baby, to make sure that it is not done on an entirely selfish need.
Karen Mayes,
Suppose the psychologist finds that the parents (hearing or deaf) select a specific child (hearing or deaf) for a selfish need, what then? It is very likely hearing parents will selfishly choose hearing embryos.
Hmmm… well, deafness is seen as an expensive disability so hearing parents will “unselfishly” choose hearing embryos (I changed selfish to unselfish, since that is how the hearing parents would see, seeing that deafness is not normal.) The reason for the counseling is to make sure that the potential parents are up to the challenge of raising a specific child (be it deaf, austic, or with Down’s syndrome, you name it…), that the parents would be willing to ensure that the designed child have a productive future as a tax-paying adult who could land a job, etc., without creating a financial burden on the government. When we decide to start families, we’d want to make sure we could afford to provide resources that the child/children need, like moving to a different state so that the child could attend certain school, etc. That is thinking of the child’s welfare. If the deaf couple approach the psychologist, telling him/her that they wanted a deaf child just because they were deaf and wanted the ease of communication, nothing more… not good enough. They need to take the child’s future into account, take a look at the environment the child would be raised in, etc. The job of the psychologist is to make sure that the prospective parents have realistic goals.
Karen–This is a good point. There was an article in Time or Newsweek over a year ago about parents who are selecting the gender of their IVF babies right now in America and in Europe. If you have money and clout, you can do it. If I remember correctly, psychological counseling was required. Still the parents interviewed were choosing gender for good reasons. I remember hemophilia ran in one family which only affects males, so they wanted to be sure to conceive a female child, since they already had one hemophiliac son.
The reasoning for psychological counseling was that sometimes a father may want a boy because he imagines playing football with a son, but there’s no guarantee a son will like football. Sometimes sons are interested in cooking and daughters love soccer. Genetic counseling can’t tell us that yet. A dad who loves sports can be really happy with a daughter, and a mom who loves music and dance can be happy with a son. You just never know. . .
I would imagine the same could be applied to Deaf and Hearing parents. How can anyone say Hearing parents wouldn’t be happier with a Deaf child over a Hearing one or vice versa? Especially if that Hearing parent came from a family of Deaf people so was familiar with Deafness?
A problem I have with either Deaf parents or Hearing parents choosing to have or not have Deaf or Hearing children is they will never know if they would have been happier with the child they might have had if they had not chosen one over the other.
Choosing is just not right unless some other health complication is involved. I know for example some Deaf genes involve kidney failure and other medical problems. That would be different, but Deafness alone?? No!
Allow me to add onto another “food for thought(s)”: why would any D/deaf parent want to have intentional deaf child when they, in fact, can allow nature to take it’s course? My thinking is this: if there’s more opportunity for CODAs to come around, then they are-in my biased opinion-a lifesaver and a great big help to the Deaf community in exposing what Deaf as a minority culture can achieve in the hearing society. I see nothing wrong with a growth rate (if possible) of CODAs if it’ll help the community via public awareness.
However, I acknowledge fully that I’m stigmatizing CODAs as heroes and that they are the only ones that can help, but this truly is not my intention, just throwing out an idea. Deaf people-as a community-can achieve just as much as potentials of CODAs, but the hearing society is largely comfortable with communicating in languages/gestures that are similar.
Hope I make sense from above commentary. :P
Josh,
You make sense. One of the questions I may address in part 2 is: what does a deaf child offer that a CODA doesn’t?
Actually, the question should be reversed. What do you as a parent offer your child? Presumably, you want the best for your child and, therefore, you should not put your personal needs and wants ahead of the child’s.
Yeah but even that question leads us to a slippery slope of potential answers. People could argue just as easily that a deaf parent would have less to offer a hearing child than a hearing parent would, therefore deaf parents aren’t as “fit” as hearing parents… or fit to be parents at all.
Which is a poor argument, but still I can see it being made. What are the “personal needs” of a child? Food, shelter, clothing, communication, etc. Okay, now how are those needs “best” met? If hearing parent in this country communicates through spoken English, and a deaf parent communicates through signed ASL, which mode of communication is “better” for the kid?
And now onto the question of the society that deaf people are supposedly “burdening.” Right now the major language in this country is spoken and printed English. Suppose that changes to include more Spanish twenty years from now (arguably already happening in parts of California, for example). Now further suppose a hearing English-fluent parent stubbornly resists teaching his kid Spanish, because “if you live in America you need to speak English.”
What are the ethics surrounding THAT decision? “Society” has altered and continues to alter regardless of what this hearing English-fluent parent believes it’s “supposed” to be like, and what people are “supposed” to do, and what language they’re “supposed” to communicate in. In fact, isn’t it kind of ridiculous from the outset to assume that in this age of globalization a kid is going to be better off in twenty years knowing ONLY English?
Now this has nothing to do with genetic or embryo selection, but it does have something to do with INTENTION. A hearing, English-fluent American parent INTENDS to raise (in most cases, I would assume) a hearing, English-fluent child… regardless of how society is changing. Do you think THOSE parents are worried about the “burden” they’ll be placing upon society in bringing up a monolingual child? They’re not. In fact I’d be surprised if they’re even thinking about such issues.
Well why aren’t they thinking about it? If this is all supposed to be in “the best interests of the child,” I mean? Seems to me that the *child’s* best interests aren’t what we’re talking about here–we’re talking about what’s in the best interests of the current predominant linguistic majority: hearing, English-fluent Americans.
Well, if THEY don’t have to worry about flexing to fit anybody else’s needs, why should deaf people worry about it?
Wow, that is amazing. Where is the fine line here? It seems reasonable to select someone to mate with based on their qualities, although hopefully there is also love here. I don’t see what is so bad with deafness that government wants to slowly phase it out. I say, once we give them this power, they will not give it back easily. And they will probably have a long list of undesireble traits. It sounds kind of familiar to me. Leave it up to the people. But maybe there are some extreme cases that justifies governmental laws. But definitely keep them to a minimum.
Please note, the Stop Eugenics campaign is not about making an embryo deaf, the embryo is *already* deaf, genetic manipulation in the UK is illegal across board. The HFEB that is currently going through parliament is saying that this already deaf embryo would never be allowed to survive via PGD where hearing embryos were available.
In terms of selection in the UK: (non-medical) sex selection is banned. You are not allowed to pick a boy or a girl, eugenics is cited as the reason. You are not allowed to pick on the basis of traits, e.g. tall person. Again this is perceived by the wider public as “designer babies”. However, the Bill seeks to make “abnormality” a special case, and allows for screening out. However, as stated previously this screening out is one way: you are allowed to pick e.g. hearing embryos, but never deaf embryos. One way nature, has forced us to respond.
(On a personal note, I do not advocate selection, however, there are people out there who might wish select us out …. thus if we are going to give them that choice, then we cannot allow a democratic society to make statements that some classes of persons are superior to others).
For the record, screening out on the grounds of deafness is already happening in the UK (Connexin26), from a decision by the Human Fertilisation and and Embryology Authority. Parliament as the supreme lawmaker is seeking to put this into a legislative framework.
There is another policy reasoning here around higher standard of care in clinics because the State is involved.
This Bill also touches on the right for people to be gamete sperm or egg donors, and already in the UK if you carry a deafness gene you cannot be a donor. Thus, who has the right to reproduce?
In terms of genetic screening in utero, this is already happening and not “could be subject to genetic screening in the near future” as stated here. It has been legal since 1967.
However, it has not had much application on the grounds of deafness to date because of where we are science wise. However, this is broadening. The ONS keeps statistics on the basis of how many fetuses are aborted on the sole basis they are deaf (no other reason). Whatever our own views on abortion, we cannot go there currently the Bill has *no* power to change abortion. Moving into this field will detract campaigning, and we’ll end up in 101 other arguments, lose support for something we could change.
Alison,
Thanks for responding to my blog, since you are on the forefront of this issue. You mentioned several things in your comment that I’d like to learn more about.
Can you provide a link to this decision? It’d help me understand the context of that decision.
My sentence has been revised to correctly read: “It is possible that unborn children in utero could be subject to genetic screening FOR DEAFNESS in the near future.”
Really? They can now detect deafness while an embryo is still in the womb? Can you provide a link to the “ONS”?
Allison,
As to your last passage, I am not still sure at this point. ONS in what countries? What I know for a fact is that some time ago in Paris, France, a couple had lost their lawuit against a doctor for not aborting a deaf fetus. The doctor said he was unable to detect deafness in fetuses. (I wish I had carried a source in the pocket.)
A scientist can detect a deaf gene when adminsitering a human being’s DNA, something that
he cannot detect in a fetus.
Off on a tangent:
Dogs and cats dump their handicapped puppies or kittens if a handicap is detected, but what they can never detect is DEAFNESS and BLINDNESS.
[…] blog started out as a comment to Shane Feldman’s blog posting and responses on DeafDC.com but my own comment went way to long so I’ve […]
i think the parents have every right, because in reality- people would ask for specific donor (blonde hair, blue eyes, etc)… why make the deafness an exception?
i, however, am tired of the big D issue… i am Deaf and i am proud of it, but to be judged based on where my family comes from, that is a fine line people are walking on. who cares if i come from a strong deaf family. who cares if i come from hearing family. i just don’t think it justifies on the future i will be creating with my significant other. it is me they are marrying into… not my family even though they would be marrying INTO my family. big difference here.
donor with strong deaf gene, i don’t see what’s wrong with it, but to look into our own background, “you’re great, but you aren’t from a deaf family…” that, is what i find absurd in the big D world.
“you’re great, but you aren’t from a deaf family….” is what you find absurd in the big D world.
OK lets put this in a different context - what about the old WASP families - they are saying the same thing here, so what is the difference here?
Brian,
What about the families before — in your own phrase — “the old WASP families”? Ironic as it may sound, they, from a historical standpoint, were the FIRST eugenicists?
Uh–Well I’m from an OLD WASP family and I’ve never known or heard of anyone ever saying anything like that. My dad’s family settled Detroit. There are several streets, neighborhoods and buildings named after my ancestors– including a main road. Churches are built on property we donated. My great-grandfather built an entire section of one town next to Detroit. Maybe this kind of WASPy name-dropping only happens back east? This is the first time I’ve ever mentioned anything like this on-line or to anyone, actually. I live in Seattle by the way, so I don’t give a hoot. Nobody here cares about my family in Detroit. I always found my mother’s family far more interesting. They had mafia connections. My dad also had a grandmother who was “Indian”–as in Chippewa — and the entire family kept that one under wraps. Oh MY! Do WASPS actually marry into OLD families still? I thought we all rebelled against that sort of thing in the 60s. I married a Norwegian. hahaha!
From my own experience I feel that I would be inclined to oppose the idea of “designer” babies. Defeats the idea of natural selection and evolution (or God’s way for those who believe). That goes for everyone, not just culturally Deaf people.
Yet I do want to have at least one deaf kid. I have the genes for it, but my girlfriend lost her hearing due to meningitis so the chances are close to nil for the both of us. That doesn’t mean we can’t have deaf kids. We can choose to adopt a deaf child if we want to. There’s plenty of children out there in the world that need loving parents, and there’s plenty of them who have some form of disability. There are other ways of having deaf children than manipulating genes.
It just seems mind-boggling that the language in the proposed legislation basically indicates that any embryos with genes that “would cause” some kind of disability are to be rejected. I can understand if the language indicates that embryos found to be abnormal should be rejected. But embryos diagnosed with the “genes” for disabilities should be rejected? I see a big difference between the two concepts, and I see this as a pure form of eugenics, regardless of what the intent is.
“ALLOW EVOLUTION TO TAKE ITS COURSE!” - a possible slogan I could see printed on posters opposing the efforts to pass this sad piece of fecal matter legislation in the UK.
Aaron– I completely agree. It’s extremely disturbing!! Many people carry recessive genes that cause disabilities but only rarely show up.
Aaron R.,
I’m not sure if I would use the word “evolution”. Some could argue that evolution *is* taking place by drastically reducing the number of people with disabilities, which are a “burden” on society.
Ah, such a complicated issue here. I’m not comfortable with the idea of parents purposefully creating disabled children. However, I don’t support the role of the government in deciding which disabled children should be implanted or not, because that choice should be up to the parents to continue with the pregnancy.
Basically, what I’m saying here is I don’t support purposeful creation such as ‘designer babies’ but I do support the right of parents to abort their fetus if that fetus has serious birth defects such as Down’s syndrome or other disorders.
Personally, if I had a deaf fetus, I would not abort it, but if I had a blind fetus, or a fetus with severe birth defects like a missing neural tube or Down’s syndrome, I would definitely consider abortion in that instance.
I’m curious– Why would you abort a blind fetus? If someone has never had the gift of sight, it wouldn’t be missed. Many blind people lead fully lives.
I probably would have aborted a Downs baby back when I was having children, but knowing what I know now I’m not sure I would. They can be taught and are very sweet.
Let’s emphasize that 90% of deaf children are born to hearing parents, therefore this bill is unlikely to make much difference in the Deaf population.
Also, Deaf peoples’ children are 90% hearing, so the infinitely small number of Deaf people selecting for deaf children are also unlikely to make any difference in the Deaf population.
The Brits are making a mountain out of a molehill in fearing higher costs to educate, interpret for, etc. Deaf people.
However, the tragedy is that hearing people fear deafness so much that they consider it as serious as diseases that result in early death. Do they consider that deaf equals death?
I wonder about the “selfishness” of bearing deaf children when these people demand that deaf embryos die in order for hearing embryos to live. What is next–legislated abortions for parents who have genetic deafness?
Keep legislative meddling out of the family. There is a slippery slope present here.
I agree, but I think it’s about money, and that bothers me even more. Maybe they will start letting people die who have serious illness and less than a 50% chance of survival? I mean cancer can be expensive to treat too. Will they treat cancer on an 80-year-old? How about a 70-year-old with a heart condition? Where does one draw the line? Who is more expensive in the long run? This is what you get with nationalized health care. Bureaucrats making financial decisions that can mean life and death in the real world.
Dianrez said “Let’s emphasize that 90% of deaf children are born to hearing parents, therefore this bill is unlikely to make much difference in the Deaf population.”
You are missing the point here. This means that 90% of parents who have never personally experienced deafness would probably have a negative concept already so if they were told (pre-selection remember) that this embryo and that embryo has a deafness gene in it - do you seriously think they will have it placed in their wombs?! - NO! So the risk here is that 100% of those will say no so the impact on the deaf schools would be what???? I leave this to your imagination and I do not think the UK deaf is overreacting here…. Let the last deaf person switch the light off at the NAD …
Hearing people don’t care about deaf schools. They don’t care about deaf culture. But they do care about where to draw the line.
That bill is far too broad. Where do we draw the line? Anyone could stand up and say, hey, the gay gene is abnormal. Gay people can’t have children on their own. Therefore, they’re disabled. Gotta get rid of gene. Hey, the dark pigment gene is abnormal, because they’re at more risk for sickle cell anemia and skin cancer. Let’s get rid of that.
People could bend that bill to fit THEIR definition of a disability, and to do eugenics.
That is what people care about. Also what people care about is, does the gov’t have the right to have that much latitude on how and what we reproduce?
I don’t think they do. I do think they have the right to deny the transmission of a fatal, excruciating disease or disorder, but for something like deafness? No.
Shane, who is this “God” you are referring to?
The one and only. ;)
So, Zeus? ;)
Odin!
Nah, Anansi.
Gotta give props to Thor…
The Trinity, of course! :)
shane
thanks for taking the time to create this blog and to link so many valuable sources
ur article and the comments that followed inspired me to write a long (too long comment) here yesterday which i moved to http://blog.deafread.com/pote
re: that 90% - most estimates are now saying it is more like 95% come from hearing families
the 10% deaf parents/siblings is now estimated to be down to 5%
not a shift in the actual genetics but in the actual counting me think
the issue with HFEB is most likely that hearing parents which are the highest number of folks creating genetically deaf children will be told by law that they can not prefer that deaf embryo
and most hearing parents will most likely agree as they r being told by the professionals that deaf is diseased, defective, and disabled etc
same is true for other hereditary conditions
there is a British hearing mum who has been posting about her opposition to this proposed law because she has two Deaf children with Waardenburg syndrome. Her mum had this syndrome and she herself was a carrier
had HFEB been in effect - her genes would have been dimissed and her two very successful Deaf lads would not have been allowed to be created
a powerful scene in the film Schindler’s list is the closing one where the offsprings and their offsprings and their offspriings of the survivors of Schinder’s list pay respects to Schindler’s grave site by placing a stone pebble (Jewish tradition)
it is a visual testimony of how if no one had spoken out for or protected these individuals all of these descendents would never come into existence
my students said since most hereditary diseases are caused by hearing parents - should they be banned from reproducing period to avoid any potential abnormal offspring? YIKES no way would any govt ever suggest such
re: the issue of Deaf of Deaf versus Deaf of hearing - i think alot of assumptions r being tossed around in blog comments about each group
both groups generally r showing forms of elitism (subaltern elite or elite subaltern)
id like to see this stop
the primary difference between most Deaf of Deaf is that they have been enculturated naturally and most Deaf of hearing have to become acculturated (learn later usually from their peers (horizontal transmission (this is not a truism - not all born to deaf parent(s) are raised culturally Deaf and not all born to hearing parents are denied their Deaf culture and ASL)
to any Deaf of Deaf person who asserts a superiority because of having been born into a Deaf family - that is a shame. u have been blessed. use it wisely and lovingly
to any Deaf of hearing person who asserts a superiority because of having been raised orally and with English emphasis - that is a shame. u have been blessed also. use it wisely and gently
really within the Deaf community and within Deaf culture there is no room, need, desire or benefit of such SUPERIORITY or any such ELITISM
Subaltern (whether the word elite comes first or after) is still subaltern
do not let our differences divide and in turn conquer us
as subalterns we should be examining the dominant / majority culture’s hegemonic practices
it amazes me to continually see when a systematic issue is brought to our attention (in this case a proposed LAW to outlaw Deaf genes potentially) how it gets twisted to become an “in-fight” of Deaf against Deaf
keep your eyes on the prize folks
the enemy need not be within
peace
pdurr
again shane - thanks
patti durr,
Can you tell me where to find the new statistics? The NIH continues to say 9 out of 10 deaf children are born to hearing parents, see:
http://www.nidcd.nih.gov/healt.....earing.asp
Your conversation with your medical professional is a good example of your freedom to make an informed choice. While you did not want to test your baby for Downs Syndrome, you had the freedom to choose. Other individuals may make a different decision and it should also be respected. If the government required babies be born without any prior testing of the embryo/fetus, this would infringe on the freedom to choose. Whether or not such testing is moral is another issue.