Is there any realtionship in Gene Therapy and Disability????

Consider a world in which gene therapy is a simple, effective and safe process. Alterations to either somatic cells or the germ-line consist of little more than a trip to the hospital to receive an injection of the appropriate gene and vector. A couple go to their local physician for genetic screening before attempting to conceive a child. They are told that the screening has detected an ‘abnormality'in their genetic makeup that will mean any child they produce will be profoundly deaf from birth. The physician then offers the couple germ-line therapy to correct the problem, allowing them to have children who will not be deaf. It appears straightforward to most of us that the couple should undergo the genetic treatment. It seems that it is preferable, for the child that the parents have a child who is not deaf, than to have one that is. This is Harris view. According to Harris, “everyone should be discouraged from reproducing children who will be significantly harmed by their genetic constitution.

A conflict between parental autonomy and the child’s future autonomy

This is not the case with respect to reproductive choice arguments based around concepts of disabled culture having value, or issues concerning how society in general views these groups. These arguments present challenges that must be considered in relation to both the particular situation they refer to, and the implications they have for the moral status of gene therapy in general. The reason for these wider implications is that decisions made in relation to the rights of disabled persons with respect to reproductive and gene therapy may affect the rights of other groups such as ethnic minorities or religious communities. It has been suggested that the underlying problem with respect to these arguments is the tension that exists, between beneficence in relation to the child’s quality of life, and the rights of certain cultures or groups to continue to exist, or to be viewed in certain ways by society in general. Davis argues that there exists another issue for gene therapy in general. She contends that these arguments are “a conflict between parental autonomy and the child’s future autonomy.

A somatic cell intervention is morally justified…

It is morally acceptable to offer somatic interventions to those person who acquire it in each generation it appears, then it is also morally acceptable to alter the germ-line so that this condition is not passed on to future generations. This would also have the added benefit of being more efficient in terms of time, money and resources then somatically altering the genes of each sufferer on an ongoing generational basis. To use the example of Huntington’s again, if we find it morally acceptable to correct instances of the disease in people through somatic cell therapy, performed on each generation, then it is also morally acceptable and would be more efficient to correct the condition through germ-line interventions to ensure the condition is not passed on and the becomes more and more rare, requiring less interventions per generational group.

Somatic cell interventions will not have unintended effects on the germ-line of recipients….

Some proponents, through application of the principle of double effect have answered the problem of somatic cell interventions designed and intended only to affect the somatic cells, which unintentionally cause alterations to the germ-line. Marc Lappe states that “Germ-line engineering as a direct attempt to change the genotype of future generations cannot ethically be justified. However, when such changes arise as an indirect and otherwise unavoidable consequence of an approved form of somatic cell engineering, they are morally acceptable. The first objection relates to the issue of intention and the unintended consequences of the interventions. Two people, both suffering the same condition attempt to acquire somatic cell intervention to remedy the condition they possess. The intention of the first person is to have the therapy in order to correct the condition, as it is present in them. The second person however knows that there is risk that the procedure will have an effect on their germ-line and this is the major reason for them wanting to undergo the procedure. While they want the condition corrected in them, the major intention in undergoing the procedure is to alter the germ-line so that any progeny will not have to suffer the condition in their life. It seems under the principle of double effect that the first person should be accepted for the therapy while the second should be rejected on the ground that he is more concerned about the effects of the condition on his offspring then on himself. As Moseley suggests, “this would seem to be a morally questionable criterion for a physician to use in deciding whether to proceed with genetic therapy. It is also troubling that all that the second person needs to in order to procure the procedure for them is to lie about their primary intention for wanting to the intervention. Having a situation where people are forced to lie or omit information in order to receive treatment cannot be one that can be said to be good medical practice.

Gene Therapy and human cloning some pros and cons….

Before moving on to this however, it is necessary to point out that with respect to enhancements, if our technology developed in such a way as to allow somatic cell interventions that could be contained within the recipient with a high degree of certainty, then there would be little to stop individuals undergoing genetic interventions that would otherwise by considered unacceptable. There is a caveat on this suggestion however, and that is that in most cases interventions that were of a radical nature, say growing extra arms or having skin that changed colour at varying intervals would and should not be paid for out of the public purse. Anyone who wanted an intervention that was of this nature would have to be willing to pay for the procedures themselves. Public funding for genetic interventions should in my view whether or not they are somatic or germ-line is restricted to those interventions that fall within the boundary of treatment and those that are publicly acceptable forms of enhancement. This position will be further discussed later when the issues of social justice and the effects of germ-line interventions are considered.

Genetic intervention technologies and issue of eugenics…

The issue of genetic interventions being used or co-opted for eugenic ends will also be considered. The problem can be broken down into two different problems; the first is that of state controlled genetic intervention which seems at least in some cases seems to bear a resemblance to the state sponsored eugenic programmed of earlier years. The second problem is that of eugenic style problems resulting from the choices made by individuals within a free market system were the provision of genetic interventions is not state controlled but is controlled by the market and individual choice. These are two different problems. Yet investigations of these problems will be show that it is possible to create a system in which the benefits of genetic interventions can be accessed by the public without this access falling into the realm of a eugenic nightmare.

Genetic interventions in general and their application in medical terms…

One of these concerns is already present in a non-genetic medical application. This is the type of objection raised by members of the deaf community to the ‘curing’ of deafness by use of the cochlear implant. With the advent of genetic technologies, particularly germ-line interventions the problems associated with ‘curing’ deafness take on additional implications. Deaf parents feel that this style of intervention would exclude an otherwise deaf child from Deaf culture. Some deaf parents do not consider the ‘cure’ to be in the children’s best interests, because it does not allow them access to Deaf culture. They believe that there is a full and vibrant deaf culture which their child will miss out on with such treatment. They also see problems with the relationship between them and their child, given that their child will never experience the world in the same way they do and neither will they. There have also been objections to this sort of treatment made on the grounds that it says something quite profound about society’s view of people with deafness and other disabilities.