Is it Wrong to Deliberately Select Embryos which will have Disabiltites?

A current bill before Parliament would revise the current regulation of IVF. One clause has caused great debate, especially amongst people with disabilities. It states:

(9) Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—

(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.

Some people with disabilities like deafness or dwarfism wish to use IVF to select embryos with the same disabilities. For reports of such cases, see Sanghavi, D. M. ‘Wanting Babies Like Themselves, Some Parents Choose Genetic Defects’, The New York Times, (December 5, 2006).

According to a recent survey, deliberate selection of children with conditions such as deafness or dwarfism is not uncommon: 5% of 190 of PGD clinics surveyed in the US have allowed parents to select embryos with conditions commonly taken to be disabilities (See Baruch, S. Kaufman, D. and Hudson, K. L. ‘Genetic testing of embryos: practices and perspectives of U.S. IVF clinics’ Fertility and Sterility (2006).)

Such selection would be illegal under the new Bill before Parliament. Should people with inherited disabilities, like some forms of deafness, be allowed to select children using IVF who have similar genetic conditions to themselves and similar disabilities? I have written extensively on this topic:

Savulescu, J., (2002)  Deaf Lesbians, "Designer Disability," and the Future of Medicine, British Medical Journal 324.

Savulescu, J.,  (2001), Procreative Beneficence: Why We Should Select the Best Children, Bioethics, 15 pp 413- 426.

Kahane, G., and Savulescu, J., (forthcoming), The Welfarist Account of Disability in Cureton, A. and Brownlee, K., (eds), Disability and Disadvantage (Oxford: Oxford University Press)

In the most widely publicised case, a deaf lesbian couple in the US deliberately created a deaf child. Sharon Duchesneau and Candy McCullough used their own sperm donor, a deaf friend with five generations of deafness in his family. Like others in the deaf community, Duchesneau and McCullough did not see deafness as a disability. They saw being deaf as defining their cultural identity and signing as a sophisticated and unique form of communication.

Such people are making a mistake, I believe, in believing that deafness is not a disability. Deafness makes life harder and makes it less likely a person will have the best life. Of course, someone with deafness may have the best of all lives (just as someone who smokes may not get lung cancer). The claim that it represents a unique culture that can only be fostered by being deaf seems mistaken. Hearing children of deaf people can learn to sign and communicate with their deaf parents, just as children of Chinese parents can learn English as well as Chinese. It is surely better to have the capacity to speak two languages rather than one, to understand two cultures rather than one. (It would be disabling for a child of Chinese parents living in Australia if the child only spoke Chinese, even though it might be easier for her parents to communicate with her.)

If deafness is a disability, many people believe that doctors should not assist couples to have a disabled child. It is important to distinguish two senses of “having a disabled child”. Imagine a couple has a child who is born deaf but who could hear if given a cochlear implant. They refuse. They clearly harm their child because that child is worse off (by remaining deaf) than it would otherwise have been (if it had the implant). There are legitimate grounds to interfere in such choices. But what if the couple have IVF and PGD and select a deaf embryo. Have they harmed that child? Is that child worse off than it would otherwise have been (if they had selected a different embryo)? Clearly not – another (different) child would have existed. The deaf child is only harmed by being selected to exist if its life is so bad it is not worth living. Deafness is not that bad. For this reason, I believe that couples who select disabled rather than abled embryos or fetuses should be allowed to make those choices, even though I believe they are having a child with worse life prospects.

We offer prenatal testing for Down syndrome in order to give people the opportunity to have children who they believe have the best life prospects. Each couple makes its own decision about whether to have a child with Down syndrome or not. Like deafness, I believe intellectual disability is bad. But my value judgement should not be imposed on couples who must bear and rear the child. Nor should the value judgement of doctors, politicians or the State be imposed directly or indirectly (through the denial of services) on them. There are good reasons to engage people in dialogue about their decisions, to try to persuade them with arguments, but in the end, we should respect their decisions about their own lives. This principle extends to their reproductive choices. Reproductive freedom is important. It is easy to grant people the freedom to do what you agree with; freedom is only difficult and important when it is the freedom for people to do what we disagree with.

Should scarce resources be devoted to respecting this kind of reproductive freedom? There is a paradox. Either such freedom is important, in which case it should be supported with taxpayer money. Or it is not important, in which case there is no problem with offering on a user-pays basis and only allowing those with the personal resources to buy it. The only legitimate ground for interference in such decisions would be if the public health costs of a whole population of people making such choices was significant. But it is unlikely that many people would make such choices and overall offering testing reduces the incidence of genetic disease in the community. Historically, medicine has been employed for the prevention and treatment of disease. Of course, that has not been exclusively so. Much cosmetic surgery is aimed at enhancing normal characteristics. And contraception and abortion mostly have nothing to do with disease. But requests to deliberately select a disabled child push respect for autonomy to its limits. Increasingly, people will seek to use medicine to improve their lives in ways which some may disagree with. Will we allow them such choices or only offer medicine on a “doctor knows best” basis?

News Links

Transcript (and podcast) of interview on BBC’s Today Programme with Tomato Lichy

Is it Wrong to Select a Deaf Embryo, BBC website

Choosing a Deaf Baby is Criminal  The Times

The Hearing’s Difficulties, The Guardian

Some Gifts One is Better Off Without, The Telegraph 

This Couple wants to Have a Deaf Child: Should We Try and Stop them? The Observer 

Embryology Debate Intensifies in British Parliament, NY Sun

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4 Responses to Is it Wrong to Deliberately Select Embryos which will have Disabiltites?

  • Neil Levy says:

    Some deaf people argue that steps should be taken actively to preserve the Deaf culture, a culture with its own language, norms and values. Since cultures are valuable, and the Deaf culture is distinctive, they argue that we have a reason to disapprove of, perhaps even prohibit, the use of cochlear implants to cure deafness or the use of preimplantation genetic diagnosis to prevent it. One powerful prima facie argument against this claim is that the deaf are very badly off, by any measure: they are comparatively badly educated, have rates of unemployment, low incomes, and so on. Proponents of the Deaf culture have a ready response: they argue that the disadvantages experienced by the deaf are social in origin, the result of a refusal to make relatively cheap and simple changes to accommodate deafness.

    It is surely true that more could be done to accommodate disability more generally. But there are limits to how much can be done. Some disabilities are social in origin, in that we could change society to eliminate their deleterious effects. One example is dyslexia, which is a disadvantage only in a literate culture. But as the example of dyslexia shows, it is not sufficient to establish that disadvantage could be eliminated by social change to establish that society has an obligation to change: we have to ask about the costs of the change.

    There is a further point. Proponents of the Deaf culture often point to Martha’s Vineyard in the nineteenth century as an example how the disadvantages of being deaf can be eliminated by social change. It is true that Martha’s Vineyard illustrates this claim. But eliminating disadvantage in the way it suggests is eliminating Deafness as a separate cultural identity. It is because the deaf were entirely integrated into the hearing community that disadvantage was eliminated. It seems, then, that the Deaf culture argument and the social origin of disability argument actually pull against each other.

    http://www.blackwell-synergy.com/doi/pdf/10.1111/1467-8519.00275

  • Dominic Wilkinson says:

    Julian,

    You argue that we should respect the reproductive choices of some, even when it conflicts with procreative beneficence.
    However, one possible implication of procreative beneficence(PB) is that some parents may be obliged to select embryos with disabilities.

    The principle states that parents should select the child, of the possible children that they could have, who is expected to have the best life.

    In the deaf child case, the parents might claim (as some have), that of the possible children that they could have, a child who is congenitally deaf would have the best life. She would be able to communicate with her parents in their rich native language. She would understand them, and their perspective of the world. They do not believe that she would be disadvantaged, since they have a lifetime’s experience of living without sound in a hearing world that they would teach her. They do not dispute that the child would have a good life if she were able to hear. They argue simply that a child born in their family would have a better life if she were deaf.

    There are good reasons to think that in such a case the parents are mistaken. The question however, is whose point of view should count in decisions to have a child. We might think of two versions of PB

    PB(subjective) – parents should select the child, of the possible children that they could have, that they believe (on the basis of relevant available information) is expected to have the best life.

    PB2(objective) – parents should select the child, of the possible children that they could have, who is expected to have the best life on the basis of relevant available information as objectively considered.

    If we hold that PB2 is correct, we effectively a ceding a large proportion of reproductive autonomy to those who would objectively decide which children we should have. If we hold that PB1 is true, then we should allow parents to make reproductive choices that are not (all things considered) the right ones.
    More than that – those parents are morally obliged to make that choice if they genuinely believe that it is the one most likely to lead to a good life.

    The question is when, if ever, should we override their choice?

    cheers
    Dom

  • Alayna Buckner says:

    Thank you for this interesting topic.

    I support the ability of parents to select embryos with abnormalities they desire in their child – in the same way that I support the parents ability to not select abnormalities that they do not want in their child.

    My primary concern with your entry is the lack of a meaningful definition of what it is to be “disabled” and the casual approach with which you define people as disabled who would not identify themselves as disabled. You say that “Such people are making a mistake, I believe, in believing that deafness is not a disability.”

    You appear to be defining deafness as a disability because “Deafness makes life harder and makes it less likely a person will have the best life.” But there are a great many things that fit that description that have nothing to do with disability. Perhaps deafness does ALSO meet a more restrictive definition such as “a mental or physical impairment which substantially limits a major life activity” – but even this definition assumes that hearing is a major life activity. You might be willing to go with this assumption, but I do not actually think it is obvious.

    It is certainly a major life activity for a large part of the population, but there are entire cultures and institutions that do not rely on hearing. Certainly, the design of our institutions and social norms in a way that makes it difficult for non-hearing people to interact with others is a fault of those institutions, and a matter of justice, not the low bar for which we define disability. A synesthetic might say that her ability to “feel tastes” or “hear colors” is a major life activity, but most of us go without this completely and do not even know what we’re missing, in part because our social systems are not set up to require such sensory experiences. Imagine if all throughout your schooling you were require to analyze poems in terms of shades of colors – and had no idea what to say – and generally did poorly as a result, reducing your access to higher education and good jobs (especially ones that required synesthetic skills). Would that be the failing of your sensory experience, or of your school systems assumption that everyone learn in the same way?

    If I were to move to rural China, with no knowledge of Chinese, no signs or way to learn Chinese and no translaters, I might find myself in a similar position as many Deaf people in the US (and other countries), of not being able to understand anything around me, including the cultural norms. Would I be disabled? I certainly would have a “harder life” and my “major life activity would be substantially impaired”. But disabled? With all five senses? Its very hard for me to attach that label to something that is purely situational in nature – much like Deaf people in a Hearing culture. Deaf people in a Deaf culture are no more imparied than I am in a Hearing culture.

    Thus, I think we should leave it up to the individuals who are Deaf to decide for themselves, based on their interaction with the hearing communities and their reliance on institutions that do not (yet) accomodate the non-hearing, as well as whatever other factors they deem relevant, whether or not they are “disabled”.

    It is not too much to assume that a great many, especially those who’d like to select embryos of children who will be Deaf, would not self-identify as Deaf. And, if Deafness is not a disability, then it is hard to see why a doctor should hesitate to help a Deaf parent have a Deaf child. (Other than the Doctor imposing her own definition, based on her own experiences and beliefs, and not those of her well-informed and rational patient).

    Moreover, I do not think you seriously considered the strongly-held believe among members of the Deaf community that there is a Deaf culture, and you simply cannot be a member of such a culture without actually being Deaf. People whose first language is American Sign Language learn differently and think about concepts in a very different way than people whose first language is English. Moreover, Deaf culture has different norms of behavior – regarding things like eye contact, and speaking etc. – than people from the Hearing community and it is reasonable for parents to want their children to know their own culture and be a member of it.

    Finally – I just want to add that there is no reference to dwarfism in this entry – and in part, I think it is because it presents an even more difficult case to argue; that is, to argue that dwarfism is a disability rather than just diversity seems more difficult even than deafness.

    Thank!

  • stephen says:

    I heard a different objection (on the Moral Maze, R4) to the quoted clause: –

    “(9) Persons or embryos that are known to have …. any … serious medical condition, must not be preferred to those that are not known to have such an abnormality.”

    The objection was that, if disabled people have equal worth to non-disabled people, then the above clause should be symmetrical. That is, persons or embryos who are known to lack any genetic defect should not be preferred to those that are known to have such a defect. That would mean that we could not select disabled embryos either in or out. Disability would be off-limits for selection, just as we may not select out (and therefore in) on the basis of race or sex.

    The debate seemed to hinge on the apparent tension between three propositions:

    a. The less disability in the world the better.
    b. Disabled people have equal worth to non-disabled people.
    c. A disabled person’s disability is for many an essential part of their identity.

    Personally I can’t see a way through that problem. Of course we don’t want to wish deafness on people, because deafness is a bad thing. But being deaf is part of a deaf person’s identity, not a merely pitiable stigma. And being deaf makes a person no worse (or better) a person than being a hearing person. I don’t particularly want to give up any of those, and I don’t see that powerful arguments for any one of them in any way lessen the strength of the others.

    Whether the tension is only apparent or is a real contradiction is another question.

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