Ethics and embryology – should deaf parents be allowed to choose a deaf child?

So, riddle me this: a deaf couple want a second child, and because of the woman’s age they’ll probably need to use in-vitro fertilisation techniques. No problem so far … until you find that the parents want to be able to select for a deaf child, and the UK government’s recent embryology bill will not allow them to do so.

This is a textbook ethical dilemma, but it’s the sort of thing that advances in reproductive technology and genetic engineering are going to make more commonplace. I find myself (unusually) wanting to side with the government on this one – but then I’m not a parent, and I imagine that changes your perspective quite severely.

I’ve sat here at the keyboard for about half an hour trying to formulate an argument for either side, but I can’t find anywhere I’m entirely comfortable – what do you think?

19 thoughts on “Ethics and embryology – should deaf parents be allowed to choose a deaf child?”

  1. This seems nuts to me. If the law forbids them to select a deaf embryo and they have a hearing child, will they poke a sharp stick into its ears and make it deaf after birth?
    I ask an extreme question because the response is, obviously, ‘No’. No parent would torture and maim a baby. Are hearing people ‘normal’? Of course, they just can’t hear. Given the choice as a hearing parent, would I want a deaf or hearing child? Hearing, of course.
    Perhaps you have to be deaf yourself to see the ‘advantage’ of having a deaf child. Being sighted, I can’t see that advantage myself. Why deny your child music? Deliberately?

  2. That’s a sticky one. My immediate response would be to say no, though I couldn’t articulate exactly why. Hmm.

    My mother works at the school for the blind in my home state, and she’s had some interaction with the school for the deaf, on another campus. Evidently many of the people there, both students and deaf teachers, are quite proud of their deafness, bordering on arrogance. This is hearsay on the internet, so not quite trustworthy, but it’s something to take into account when looking at their possible motives. Some deaf people don’t see themselves as being disadvantaged, being deaf is a plus.

  3. Deafness is still considered a physical handicap yes? I know it is overcome with more ease than other handicaps but really – intentionally selecting for a deaf child is willfully inflicting a physical handicap on them. It’s a matter of intent. Not to sound mean, but the parents are physically damaged here – and now are saying they want their future child to be dmaaged too. They want to deny the potential child an ability they lack but humans normally have. While I have no wish to sound shrill, couldn’t that be classed as a form of abuse?

  4. Considerations…

    – deaf people worldwide have a distinct deaf culture. Cultures have rights. Hence deaf people can demand the right to have children that are geneticly predisposed to further their culture.

    – what if an unemployable lonely girl wants a child that will stay with her and is sweet and cuddly and demands to give birth to a child with DOWN syndrome?

    – what happens if christian scientists discover genes that all but guarantee religious sentiments in offspring and parents want to have their children to have those genes?

    – what happens if two gay parents have children (some way…) and have the fertillized cell selected to have a predisposition to be homosexually inclinded? What if the two parents are male and have their offspring be selected to be male AND male homosexual?

    – What if a distinct christian demographic starts selecting their kids on genetic predispositions to NOT be gay claiming it is a disease?

    – What if some parents have their kids geneticly selected in some thirdworld country (with no laws on the subject) move to europe or america with kids, and tell nobody their introduced (inheritable) animal genes in their kids genetic makeup that do tricks no human can, like digest new kinds of food, have new kinds of sensory abilities, have resistances to diseases or are clearly smarter?

    – what if parents create a chimpansee embryo with 17.8% human genes, and adopt it? … what if the offspring looks and acts like a human but is ikn fact 80+% chimpansee?

    – what if a laboratory in some third world nation conducts medical experiments with humans that look and act human BUT have 80% chimpansee genes, the company claiming these hybrid are in fact chimps and the tests are animal tests?

    – what if an aging human goes sick from a wasting brain disease but scientists keep him functioning by giving him IV’s that replace his nervecells with artificial, genetically engineered nervecells? At what stage isn’t the human a human anymore? When 50% of his braincells have been replaced by artificial braincells? Or 90%? And if when he isn’t a human anymore can we start doing lethal animal tests on him because there is a large profit in it when doing so? What if the man hasn’t have a body anymore at some point, and he is just a bit of brain matter in a box, his body has been removed, but he still acts and thinks and communicates as a human? … and what if his estranged wife claims his behavior has changed a lot, claims he is dead and his brain simulation a *thing* (and she stands to inherit a big lump of money when he is declared legally dead..?

    These are the simpler questions. In a few decades we will see the rrreally troubling scenario’s unfold, the ones we cant even predict yet.

  5. I’m against it for reasons already mentioned. This is not a normal occurrence in humans and it doesn’t really matter if the parents are deaf. For them to ask to have their child be BUILT deaf is morally and ethically disgusting. I understand you want to have the child know what its like, but that’s nothing short of malicious to want to impose an unnecessary handicap on a baby/child. That child has ever right to be born with the best chances to be healthy. Sometimes it doesn’t work out that way, but most of the time it does, but to deny that chance of having everything a human is supposed to have when he/she is born is just wrong.

  6. My answer is no.

    Purposefully altering the genetic makeup of your children is a complex ethical issue. The current least-bad option would be for children to be born and develop in “the old fashioned way” and then for the children themselves to be able to make the choice later in life.

    The hypothetical deaf couple would have to accept whatever combination of genes lies in the fertilised eggs that come to term.

    If their child was deaf then so be it. But what if they didn’t want their child to be deaf?

    The argument that there is a “right” way to be and a “wrong” way to be is not correct.

    Damn. This is tricky. You’re balancing the right of the parents to create children with the right of a prospective child.

    Provisionally I’d say no, because deafness has the potential to have a negative effect on the child’s quality of life.

    But I honestly don’t know.

  7. This is the genetic equivalent of foot-binding.

    There is NO difference between deliberately selecting for a deaf child, and deliberately deafening a child born with hearing.

  8. But……. the implication is that if we CAN (at some steep cost) discover genetic abormalities and we CAN (at some steep cost) pre-select embryo’s in this manner, weeding out whatever is like to cause the child to grow up to suffer, we MUST DO SO.

    If we disallow deaf parents to intentionally have children we universally categorize as disabled, we should do the same with every single other parent.

    And I am in favor of that! I go even one step further – I think children who were conceived, where the parents could reasonably expect the child to be deficient or disabled, society should hold the parents legally responsible for all costs this human being will cost society. I may even argue this particular act by the parent to be regarded as child abuse, neglect or criminal negligence.

    A good parent doesn’t step sideways and have his child be deformed, impaire, disabled or suffering, doing nothing, or risk having it happen. If a person takes that risk, he or should should be BARRED from being a parent by society.

  9. It worries me that the discriminatory foundations of this Bill have been glossed over in much of this debate. This policy clearly states that a child without a ‘serious illness’ must be automatically preferred to a one that does have one (or indeed, a risk of developing one). This is clear discrimination and implies that a Deaf life is one not worth living. If this legislation is passed a precedent of statutory interpretation will have been established – that deafness is indeed a ‘serious illness’. In future what other ‘conditions’ may be eradicated in this way? This medical conception of deafness is a narrow-minded denial of the richness and value of Deaf culture and community.

    Deaf persons have many unique qualities to offer the rest of the world – can many hearing people claim to be able to attend an international conference and be able to communicate with any person of any nationality? Deaf persons can through adapting their beautiful and flexible language. Far from being isolated and lonely individuals, each Deaf person may become a member of a vast global community if they wish to do so.

    Clause 14 should be recognised for what it is – yet another thinly veiled attempt to eradicate Deaf persons, motivated by economics. The brave parents at the heart of this debate are not seeking to ‘engineer’ a ‘designer baby’. The embryo is deaf, it already exists. They are simply saying that they would deeply love and cherish a child that others may see as disabled. What is so very terrible about that?

  10. Sarah:

    The brave parents at the heart of this debate are not seeking to ‘engineer’ a ‘designer baby’. The embryo is deaf, it already exists. They are simply saying that they would deeply love and cherish a child that others may see as disabled. What is so very terrible about that?

    True, they’re not trying to engineer a deaf embryo, but they wish to select one by preference, discarding hearing embryos in the process. By applying your logic, that means that they’re trying to eradicate hearing from a subset of the population, which is plainly a ridiculous overstatement of the actual case – as is yours by inference.

    No one is suggesting that deaf people are second class citizens, or inferior in any way. Nor is anyone denying that deaf people adapt and thrive in the modern world, or belittling their culture. No one is saying that a deaf life is not worth living. But it is not discriminatory to observe the fact that someone who is deaf is at a disadvantage by comparison to those of us lucky enough not to be born with a similar problem – a disadvantage that is, granted, compensated for by deaf culture. It is no more discriminatory than observing that a person with a missing leg is going to have trouble dealing with stairs. Discrimination would lie in failing to assist such people to live the best life they could in a world we take for granted.

    But what you’re suggesting is that the parents get to choose a lifestyle for their child that their child might perceive as a disadvantage once old enough to do so, simply because they’d rather have a child with the same disability as themselves. That strikes me as a curiously selfish approach to parenthood. If, by your argument, it would be so ethically wrong to destroy an embryo because it had genes for deafness, surely the same would apply to the embryos destroyed because they didn’t have genes for deafness? You appear to be seeking not parity put preferential treatment, unless I have mistaken your argument entirely.

  11. Another sticky point here is, should the law intervene in these cases, or is it a medical ethics thing where the doctor should refuse to do so?

    Sarah’s comments are, I think, a little extreme. Trying to ‘eradicate deafness’ doesn’t mean eradicating those people. We want to eradicate AIDS, but that doesn’t mean we’re going to off all HIV+ people. Personally, I wouldn’t call the parents ‘brave.’ Selfish is more like it.

  12. My argument against parents choosing deaf children is one against imposing limitation of abilities, especially natural human abilities without some compensating strong gain in other capabilities. A deaf child would be disadvantaged in a hearing world. Imposing disadvantage particularly relative to human norm is a real harm to the child and its options in the world.

  13. If deaf parents are so eager to parent a deaf child, why not adopt a child who is already deaf and needs parents?

  14. Isn’t creating a child with a disability contrary to medical ethos? Like do no harm. Aren’t you harming the child? Also the child has no say on this matter and will grow up to have to live with whatever condition the parents gave him/her. What if 20 years from now little Peggy decides she wanted to be able to hear, see or walk after all?

    Like one of the posters mentioned, maybe adoption would be a better option for couples who want something like a deaf child. It certainly would give the child a home where it would be appreciated and thought of as having an advantage than a hurdle in his/her life. But we are selfish people, wishing to pass on our genes no matter how hard it may be to reproduce or to pass on the traits we like.

  15. I have to agree with Laura. I took two years of ASL in college, and learned from a proudly Deaf instructor. I would like to have a deaf child but I would never try to use new medical advances to insure this, therefore my husband and I plan to adopt a deaf child. Much of the reason I would like to have a deaf child is because many of the deaf children that are up for adoption are not adopted because they are deaf, many potiential adoptive parents do not want to go through the trouble of learning ASL and the chalanges of trying to relate to a child who experiences the world differently than you when it’s hared enough already to relate to the next generation. It’s not so important to me to have this genetic link between me and my children, but I think to people who want to have their own biological children who are deaf these two factors would be equally important.
    When we do adopt our child I plan to fully expose them to Deaf culture but try to have them learn to lip read and use speak so that they can try to find a balance between the Deaf and hearing worlds. If their hearing could be improved with hearing aids, then I’ll make them available. Trouble is when parents try to have their kids in both Deaf and hearing culture the children are often seen as not quite Deaf even if their deaf and not really hearing even if they can lip read and speak.
    I can understand why the Deaf couple would want to have a deaf child, deafness isn’t a disability in Deaf culture and a child born deaf is often times seen a more deaf than someone who becomes deaf later in life. Then too a CODA (child of deaf adults) isn’t deaf but hearing and only has ties to the culture because their parents are deaf since they themselves are not. Though too, CODAs make the best interpreters there by playing an important role when deaf and hearing meet.
    It’s true though, most people are born hearing. Deafness isn’t always a disadvantage but I just couldn’t see myself tring for a deaf child. Infact, I hapen to be of short stature (only 4’11”) before I married my husband I was intentially looking for some one much taller (he’s almost 6′) to try to give my children a chance at being of a more normal height. I just come from a long line of short people and I don’t see my height as a disadvantage really but it has gotten in the way of some things I have wanted to do (like I always wanted to be a flight attendent, untill I found out you had to be 5’2″ to reach the overhead compartments). As a parent I would want to do everything I can to make sure my children have the most oportunites open to them.

  16. The question of whether a child is being harmed by being selected to have (what many people perceive as) a disability is actually quite tricky to prove. This is because, if the child was *not* selected to have this characteristic, the child would *not have been born at all*. A genetically and psychology different child would have been born instead. The only options for this *particular* individual are:

    a)existence, but not being able to hear (yet presumably having a life worth living)

    Can non-existence ever be better than existence? If so, who is it better for? Someone who doesn’t actually exist? That strikes me as absurd.

    I believe that no-one would actually be harmed by deliberately bringing a deaf child into existence. It could be argued that the *world* is worse-off (i.e harmed) than if a (different)hearing-child was brought into existence instead. But making this claim and actually demonstrating it is the case are 2 very different things.

  17. I see absolutley NO sticking points. This is not a textbook ethical dilema. This is ridiculous. Those parents shouldn’t be allowed to have a child. Purposefully handicaping your child? What good parent would do that? NONE! A child is not for the parents pleasure. The parents are there solely for the child.

  18. This ethical dilemma is a matter driven by the egocentric needs of the parents and selfish in its most basic form. Parents driven to provide the best possible outcome, opportunities and CHOICES for their unborn children would never choose to deliberately limit the abilities of their offspring. By deliberately removing the capacity to enjoy music, and the learning experience of driving as a teen for the sole reason that as a parent you embrace a culture of deafness is nothing less than self centered. Social milestones that come with child and adolescent development built around music, dance, the noise and excitement of a football game frenzie–as well as the independence of driving pals to the pizza parlor after the game are all events compromised for a deaf child.

    Lastly, by selecting a deaf embryo, the choice to drive and enjoy music is taken away arbitrarily from an infant who will one day be an adult that might have preferred to be a hearing adult.

    Predetermining the hearing condition of a child is not a choice for any person other than one being born with the condition. Free Will and Free choice not subject to the decision of a selfish deaf parent.

  19. One of the major issues here is the commodification of children and the belief that children are essentially “property” of their parents, who have the right to do virtually anything they want to them.

    That said, they didn’t do anything legally wrong, per se. They went out and chose someone they knew who was deaf to be a sperm donor. It can’t be against the law for two deaf people to reproduce, although knowing that they chose him because he basically guaranteed that they’d have a deaf child is enough to make me queasy.

    Here’s an entirely different moral issue though, that may occur: what if a future couple decides to do genetic screenings to ensure that they have a deaf child?

Comments are closed.