Can Genetic Engineering remove the Tension of Disability?

Why then do people with disabilities there is a tension? Why would they not welcome the disappearance of the disability, in much the same way society at large has welcomed the disappearance of Smallpox. One of the reasons for this is the argument that any viewpoint relating to ‘curing’ a disability, assumes what is known as the medical model of disability, where a disability is viewed as an impairment of some kind, in an individual. This model has been subjected to criticism because it does not seem to parallel our societal understanding of what disability is. In addition, the medical model seems to have the view built into it that a disability is bad for the person who has it and that they would be, or would have been better off, if they did not have the disability. It is this view that Reindal suggests motivates some of society’s reactions to disability. One consequence of it is that resources are directed into impairment-related research and intervention, whereas scant resources are channelled into social change for the inclusion of people with impairments. He is concerned that with increases in genetic interventions that advocates of the ‘curing’ ideal will argue that we cannot assume that society is obliged to undertake changing the world for disabled people so as to render them not disabled in all cases, rather than eliminating the impairment, especially where doing that is cheaper.

Feinberg’s conception and Genetic Engineering

This is one of the central themes of Feinberg’s conception that the child be given as much freedom as possibility with respect to being able to being able to choose for themselves what it is that constitutes the good life. An intervention such as skin the randomly changes colour clearly is one that would restrict the conceptions available. The argument may still be made that even if certain conceptions of the good life have been removed from the child, these have been replaced with others that more than make up for the loss. There are two problems with this; the first is that with any claim like the one above we have to first be certain that the intervention in question is not one that will violate any of the child’s rights first. Only once this has been established can we begin to consider anything else and with respect to something like skin that change colour I suspect that it may violate some of the child’s rights. The other problem is that it is the case that a choice has been removed from the child. The parents’ idea of the good life, that having skin that changes colour is a good thing, has been placed upon the child before the child has had the opportunity to consider whether or not this intervention is one that fits into their conception of the good life.

Ability of making distinctions between various types of genetic interventions

One further issues needs to be addressed with respect to the ability of making distinctions between various types of genetic interventions, in particular those that relate to the enhancement of complex traits such as intelligence. This is that any attempts to make distinctions between the appropriateness of different interventions is a flawed process because with respect to complex traits in particular it is difficult if not impossible to through the manipulation of a person genetic code make any real changes to these complex traits with any degree of certainty. This is because with traits such as intelligence, it is not the case that the level of a person intelligence is controlled either by the genes of the person in question or by their environment, rather these complex traits are instead the result of the both the actions of the gene and the environment as well as a random developmental noise. This is “in contrast to models of development in which genes or environments are determinative.”[xii] This idea suggests that it is therefore difficult if not impossible to manifest any real directed change in a complex trait via genetic intervention and that as a result procedures aimed at enhancing these complex traits are inappropriate.

Improved quickness and dexterity by Genetic engineering

What about the situation where Sarah is genetically enhanced by her parents to have improved quickness and dexterity, as they desire her to be a good soccer player. If she doesn’t like soccer then Schonfeld suggests there will be a number of detrimental effects that this will have on the child and family and these effects show that genetic enhancement breaches the fiduciary relationship. It is my position that it is not the use of genetic enhancement in and of itself that breaches this relationship rather it is the attitude of the parents themselves. Genetic enhancements to improve a child’s quickness and dexterity are likely to give the child a wider range of conceptions of the good life or at the very least make improvements to those conceptions of the good life they would have without the enhancements.

Genetically engineered to be a good soccer player

The problem for Schonfeld is that he seems to be suggesting that being genetically altered to be a good soccer player amounts to the same thing as genetically enhancing a child’s quickness and dexterity. An important point to make here is that, if parents wished to have there child genetically engineered to be a good soccer player, then it could be suggested that one of a range of genetic interventions that would be made to the child would be to give the child a love of soccer. This would of course mean the problem Schonfeld foresees due to Sarah not liking soccer would not occur. This is not to suggest this type of genetic intervention would be morally acceptable, if for no other than it would as I have said previously severely diminish the range of conceptions of the good life available to the child and thus breach the fiduciary relationship between the parent and the child.

Genetic engineering and IQ of a child

We will consider and example that shows how the distinctions discussed above can be used in order to show that at least one genetic intervention that has been traditionally viewed as an enhancement is acceptable. Take the example of parents who wish to increase the IQ, or at least the potential IQ of their child,given that this wish is not in response to the child having an IQ that falls which places them in the malady category. This intervention unlike the others discussed does not appear to have a negative effect on the choices or conceptions of the good life available to child in question although this is not the view held by Schonfeld, however her claims with respect to this will be answered shortly. This is because regardless of the life plan that the child decides is appropriate for themselves it seems as if it will go better if they have a higher level of intelligence, as they will be better equipped to deal with the challenges of life and better able to consider the choices available to them with regards their development of a life plan. Some may argue that this is incorrect, and this is the position taken by Schonfeld. She uses two examples to illustrate her point, namely increased quickness and dexterity and more importantly for the discussion her increased intelligence. Schonfeld suggests that while on the surface these enhancements would appear to be “at least permissible according to our fiduciary role, if not specifically required by it” this is not the case. The first issue that Schonfeld raises is ‘what happens if Sarah does not like soccer.” He says that this may be detrimental to Sarah, because even though she doesn’t like soccer, her parents have invested time and money in her having certain skills and therefore there will be more pressure on her that on a non-enhanced child to utilize those skills to their best advantage. As well as this the parents disappointment with her not fulfilling the expectations they had for her may have a detrimental effect on family life, leading to an unhappy environment in which to grow and mature.

Genetic Engineering and Disability

Recently a number of cases involving the use of the cochlear implant as a ‘cure’ for deafness, and requests from parents with achondroplasia (dwarfism) or hereditary deafness, to have children who possess their disability, have highlighted problems with the position defended by Harris. The problems associated with requests such as these will become more common as our ability to manipulate our genes increases.

What factors would motivate the desire, on the part of persons with disabilities, to have a child who shares their disability, or not to ‘correct’ such disability when the option to do so exists? There are a number of reasons put forward for this choice. These include the idea of the value of Deaf culture(or any other culture surrounding a disability), issues relating to how persons with disabilities are viewed by the community at large, a fear of being unable to relate to and interact with a child that does not share their disability and the difficulties associated with adapting facilities and lifestyle to cope with a non-disabled child.