Reverse Eugenics

I’ve just been made aware of this story which is doing the rounds on the web at the moment. A deaf couple are claiming the right to choose a deaf child, over a hearing child, through IVF screening, in the face of a new law which will say that once the embryos have been screened, the most healthy one must be chosen.

Mr Lichy says that being deaf is a core part of his culture and identity, and (quoting the BBC article), “it is those who are able to hear who are at a disadvantage in a world of deaf plays, deaf poetry, and deaf jokes.”

I’m going to discuss this part for a little while. Although I don’t deny that deaf culture is both distinct and fascinating, and that I wish I could do sign language, being deaf isn’t a prerequisite for being a part of that culture. They could easily teach a hearing child sign language, which makes them able to take part in the deaf culture. Indeed I’m sure a child brought up in a deaf family would have a very rich culture; being bilingual with English and sign language isn’t very common at all, and I’d love to have had that opportunity.

So I dispute the assertion that hearing people have a disadvantage. Deafness IS a disability, no matter what the Lichy’s want to think. It is an inability to hear which presents all sorts of practical problems and disadvantages, and although a lot of positive aspects (not least deaf culture) have sprung from it, and it’s easier than ever to live with, that doesn’t mean it’s not a disability. I think that choosing a deaf child, just so they can relate to it a bit easier, is very selfish, and they really don’t have the child’s best intentions at heart.

That said, this is only a very narrow part of a much wider issue. The Lichy’s argument is against the new bill which says that once they’re screened, the most healthy embryo must be selected. But, if they choose not to screen the embryos, then they can take their chances, which means they might get a deaf child and they might not. What they’re saying is that the new bill basically implies that deaf or otherwise disabled people aren’t as valid as hearing people (incidentally a commonly used Spanish word for disabled is minusvalido, literally meaning “less valid”. Imagine that in today’s world of political correctness).

To a certain extent I agree with them, but I think their argument is a bit skewed. Just as the law implies that disabled people are less valid than ‘normal’ people (for lack of a better word), so does their selection process of choosing deaf embryos over hearing embryos imply that normal people are less valid than disabled people, which is just as untrue.

What I think the Lichy’s should be campaigning against is IVF screening in its entirety. But then again I’m unsure where I stand on this issue as well, mainly because what little I know about IVF, I learned in religious studies classes at school. The way I see it, there are practical reasons for screening embryos; some may have been damaged by the IVF process, for example. For me the most ethical thing to do would be to screen embryos for damage, but then how do you differentiate between damage done through the process and a disability that would have occurred naturally anyway? I have no idea if it’s possible. I know that at the moment you can choose not to have them screened, but does this result in a higher level of disabled children born compared to non-IVF methods or not? I don’t know.

The fact that it’s commonly done, however, leads me to believe that it’s not too dangerous, so I think the most ethical way to avoid eugenics, either the conventional type or the reverse type we can see here, is not to screen IVF embryos at all, depending on my assumption that it isn’t a big cause of disability.

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17 Responses to Reverse Eugenics

  1. Ian says:

    IVF screening is a force for good – this couple are simply using it for selfish and narrow minded purposes. I believe the right response here is to remove the ability to screen from them, as they are not demonstrating sufficient maturity to handle it.

    (and frankly, it’s not that different to south east asian women being refused tests on the gender of their foetus to prevent them from misusing the data and having daughters terminated)

    The reason I believe IVF screening is a positive thing? I opted not to have children at all because my family has a history of quite horrific spinal problems.

    I have had to have physiotherapy throughout my life, have scoliosis and hip problems. One of my cousins had to have his ribs broken and pinned to correct the spinal deflection so that he could breath properly, Another has had her hips replaced twice and has difficulty walking – she’s 24.

    If any of us opted to have children, IVF screening is the ONLY option open to us to prevent passing this horrific set of conditions on to the next generation.

    The fact that some people are unable to think of the good of the potential offspring, but see the child as just another purchase should not prevent those of us who are capable of more altruistic thinking from benefiting from the technology.

  2. grammarking says:

    Ian, thanks for getting in touch, I’m gonna take a closer look around your site in a minute.

    Like I say, I’m still not so sure where I stand on IVF screening because I don’t know very much about it at all. Thinking about it now… I suppose the question I should be asking myself is “do we want to reduce instances of disability?” And the answer is yes. My parents both work for the National Autistic Society and I’ve worked with disabled people in the past, so I know how difficult it can be for them. I wouldn’t want to be in that position myself and I wouldn’t want my children to either.

    But does this make me a eugenicist? That I don’t know. For me IVF screening might pave the way to eugenics.

    My answer should be better informed, I think. For instance, what exactly can you screen for? Is it just defects, or can you screen for everyday things as well? I would be totally against screening to produce just white babies with blonde hair and blue eyes for example. How do they do the screening? Is it just one test for everything, examining the genes, or is there a series of tests? In the former case it would be difficult to legislate against screening any particular feature. The issue is a difficult one, riddled with bio-ethical questions which to be quite honest I’m not sure I’m qualified to be answering.

    I’m gonna be thinking about this a lot in the next few days, I think.

  3. Joshua says:

    If you tell people they can’t select their children, aren’t you in effect selecting for them – forcing them to have an ‘unselected’ (random?) child? How does this differ to the eugenicists of the past banning certain marriages or withholding contraception for “fit” couples?

  4. grammarking says:

    No I don’t agree. I don’t see how not selecting a child based on its physical attribites could be seen as eugenics. They’d be having the child that they would have had naturally (well… not exactly but you know what I mean), keeping the diversity in the species. Eugenics is all about aiding natural selection by only keeping the fittest (or in this case the most deaf), narrowing the diversity in the species. The two seem conflicting to me.

    I’ll read your posts on the issue.

  5. Joshua says:

    I feel it may very heavily depend on how ‘eugenics’ is defined. The term has many meanings. You should read all my posts on eugenics, but if you are to read any one, read part 4 – it is the most relevant to this discussion.

  6. grammarking says:

    I read them all briefly yesterday. The one that seemed most relevant was the first one, purely for the distinction between positive and negative eugenics. It put a bit of a new spin on it for me but nevertheless I don’t think that not selecting can be seen as eugenics.

    I did have an issue with your part 4, actually. Mainly with the assertion that people consider the current human form ‘ideal’. I disagree entirely, evolution is a work in progress, there’s no such thing as the ideal form, it’s just what we are.

  7. Joshua says:

    Firstly, not selecting when you have the power to select is still a selection. You are still making a choice about what sort of children there are to be whether you opt for a blonde-haired, blue-eyed white baby or whether you decide to leave it to chance. However, whether or not that constitutes eugenics is debatable.

    Secondly, you and I are probably in a minority thinking that evolution is a work in progress. By far the majority of people believe that either humankind was created by an all-knowing deity, or that evolution was guided by the afore-mentioned deity to reach the current position. Among both groups though, evolution is accepted as the creation of God, and so interfering in it is ‘playing God’. Many secular people similarly respect some sort of ‘sanctity’ of nature. Therefore, they do see the current form as an ideal, but only natural evolution or God can change that, not humans.

    Just as a question, I take it that you would have no problem if evolution did guide the human species towards a blonde-haired, blue eyed caucasian norm? That is, your problem is with human interference (the means) rather than the effects (the ends)?

  8. grammarking says:

    I still don’t follow your logic that not selecting is a selection. If you leave it to chance, how can it be a selection? You’re not picking the one with any particular feature, and the embryo that’s implanted could be anywhere along the healthy-fit spectrum. If we follow that logic, normal reproduction is like the positive eugenics of the past, which is nonsense.

    To answer your question, I don’t really see how that would happen, and if it did, I’d consider it a great shame, as it’s further reducing the diversity in the species, through the extinction of all other hair and eye colours. Admittedly I wouldn’t have a moral objection, but I think that’s mainly because humanity didn’t do it, natural selection did, and I’m not gonna stand there and tell natural selection that it shouldn’t be doing it, that’s kinda pointless.

  9. Joshua says:

    In the past, normal reproduction couldn’t be eugenics because there was no other option. And without the power to choose, there could be no choice. However, we now have other options, and so whatever we end up doing with be a selection made by us as to what sort of children to have (if any).

    From your answer, I get the impression that you think diversity in the human species is important. If that is true, why would you leave diversity in the hands of a random natural process? If it is not true, why does it matter if people choose to have a certain child?

  10. grammarking says:

    I think diversity is important in any species, probably least so in the human species, but still important.

    In any case what you appear to be suggesting is that in order to maintain diversity, we should be choosing children by their ‘diverse’ qualities. But in order to do that, would we not need statistics on the physical features of everyone on the planet? Would we not need to know the genetic makeup of everyone, just so we know what is diverse and what is normal? Even if we suppose that we could make an objective judgement about this, instead of just choosing the one which suits us best, who has the authority to decide what level of diversity we should be maintaining? The whole idea is frought with practical and ethical difficulties, and I’d prefer to leave the whole thing to chance.

  11. Joshua says:

    Perhaps a better question would be to ask if you think diversity is important enough that you would be willing to deny people access to reproductive procedures, such as embryo screening or cloning, in order to preserve it.

  12. grammarking says:

    Well I don’t know for sure, that’s the whole point of the thread. Cloning is a whole different ball park for me so I’ll leave that out, but at the moment screening isn’t very common so I wouldn’t deny it to people, but in the event that it got a lot more common I’d probably reconsider. It’s not the screening itself I have a big problem with, it’s more about what it might lead to in the future.

  13. Joshua says:

    I’ve come up with a thought experiment to see whether genetic diversity is more important than reproductive freedom:

    If the entire Jewish people were all to, completely voluntarily, seek to undergo sterilisation or to remain celibate and childless, would it be justifiable to withhold those procedures in the interest of maintaining the genetic diversity that the Jewish people bring to the human race?

  14. grammarking says:

    No, but I think a sterilisation procedure is very different to cloning and IVF screening.

  15. Joshua says:

    So do actually you have a problem with embryo screening itself, rather than the effects they may have on genetic diversity? Are they wrong as a means, and not because they could lead to a harmful ends?

    Because in my hypothetical situation, the choices people make with regards to their reproduction are threatening genetic diversity. Just like you said could happen with cloning or embryo screening. So, unless you do have a problem with embryo screening, you must admit that you would favour reproductive choice over preservation of genetic diversity. What is the moral difference that makes you choose genetic diversity in one situation, and free choice in the other?

  16. […] Activist Mishka Zena: Should Deaf Parents Have a Deaf Child? The Not-Quite-So-Friendly Humanist: Reverse Eugenics JoJo Moyes: A deaf child – not your right to choose Mike Gulliver’s Blog: Response to John […]

  17. Shaneybo says:

    I do realise that ur entry was written four years ago – but if you are actually a humanist, Mike, then it is not up to you to decide whether it is right for deafies to have deaf kids or not.

    Unlike most disabilities, we deafies are a paradox unto ourselves – because of our “disability” (which is seen as a real blessing)

    In our first 20 years, we deafies may be in a position where we are forced to lead isolated lives because our hearing families (fed lies & fear by so-called professionals and soothsayers like you) does not want us to mix with other deaf people or go into the deaf community.

    On a regular basis, we have to deal with surdophoia, from your people (you hearies) and even from our own families at times (including my father, bless his cotton socks)

    But once we go into the deaf community, life gets better – just like with the “It’ll get better” campaign against homophobia. The deaf community is a really amazing world, something that you cannot even imagine at all, Mike.

    I can understand why Paula & Tomato wanted to have the right to choose whether their kids will be deaf or not (by the way, they have 2 deaf girls now – beautiful, intelligent, full of wit and full of curiosity). Last week, the two girls’ deaf mother was directing a Shakespearean play in British Sign Language…at the Globe Theatre (I heard all seats were booked in advance so people had to stand!)

    While I do understand your fear for kids having disabilities forced upon them, deafness is not a disability for us deafies – as long as we have our language and our community, our deafness is a miracle in disguise! 🙂

    Isn’t what Humanism is all about – being positive, compassionate and forward looking? That is something you might learn from our deaf community – we don’t need to believe in organised religions to create the deaf community – a perfect example of humanism?)

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