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The ethics of prenatal genetic testing : eugenics, disability rights, and reproductive freedom Pontin, Mark

Abstract

Many predict that our new understanding of human genetics will soon lead to the development of new treatments and cures for genetic diseases and disabilities. At the current time, however, this understanding has lead primarily to the development of numerous diagnostic tests used to determine if people or fetuses have a given disorder. This thesis will engage in an ethical investigation of the most widely available testing technology in Canada — prenatal genetic testing. This investigation will begin with an analysis of the "eugenics critique" of prenatal testing. This analysis will examine the connection between the current practice of prenatal testing and the historical eugenics movement. This will be done to ascertain if there are any moral and ethical implications for prenatal testing, as it is often suggested, which flow from this connection. I will conclude that there are some legitimate moral concerns which grow out of this critique. They are concerns that prenatal testing is practised in such a way that it respect reproductive freedoms, value pluralism and the dictates of justice. The moral concerns outlined by the eugenics critique will supply the framework in which the remainder of my investigation will take place. I will examine claims made by disability rights advocates that prenatal testing discriminates against the disabled and denies them their fundamental right to exist. In the end, I will argue, that the disability rights advocates fail to substantiate their claims, but they do highlight concerns about the coercive nature of the testing system and concerns that decisions made within it are often based on stigma and stereotype. I will conclude that the concerns highlighted by the eugenics' and disability rights' critiques can only be addressed if we ensure that prenatal testing takes place within a context which allows parents to make decisions based upon their own values. If this is to be done(as it is currently not the case), then the roles of key figures in the testing system must be reevaluated. In particular, genetic counsellors must give up their strict adherence to the ethic of non-directiveness and they must use the genetic counselling session to correct for the pressures that currently undermine parents' rights to reproductive freedom.

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