22 November 2005
Genetic Testing and Individual Rights
In her article in the New York Times on November 20, 2005, Amy Harmon cites the fear of Andrew Imparato, president of the American Association of People with Disabilities, that “science is trying to remove at least some of us.” Likening the prevention of illness to eugenics, Mark A. Rothstein of the University of Louisville decries “not accepting the normal diversity within a population.”
Isn’t it as important to spare individuals from the suffering of Down syndrome, cystic fibrosis, Tay-Sachs disease, or other crippling, genetically detectable disabilities as to maximize their possibilities and happiness once they are born? It is specious to argue that the less affluent will bear the burden of grappling with these conditions because they are unable to afford the cost of pre-natal genetic testing. Living with many of the disadvantages of poverty is an emotional strain; but that is better alleviated by programs paid for by society at large than by restricting the right of those who can afford it to avoid such tragedies.
Is first cousin intermarriage, known to cause frequent genetic disorders, a social harm that merits prohibition? There are many arguments in its favor based on cultural considerations, like shared values and personality traits. Perhaps the frequency of illness among the offspring of first cousin parents can be reduced by pre-natal genetic testing; however, for this strategy to work, pre-natal genetic testing, and possibly abortion, would also have to be consistent with the cultural values that favored first cousin intermarriage in the first place.
Tabooing first cousin intermarriage also deprives society of the diversity brought by genetic disorders. This genetic selection tool is used even in cultures that accept prenatal genetic testing and abortion. It is not labeled eugenics -- nor should the use of science to prevent avoidable disabilities.
In her article in the New York Times on November 20, 2005, Amy Harmon cites the fear of Andrew Imparato, president of the American Association of People with Disabilities, that “science is trying to remove at least some of us.” Likening the prevention of illness to eugenics, Mark A. Rothstein of the University of Louisville decries “not accepting the normal diversity within a population.”
Isn’t it as important to spare individuals from the suffering of Down syndrome, cystic fibrosis, Tay-Sachs disease, or other crippling, genetically detectable disabilities as to maximize their possibilities and happiness once they are born? It is specious to argue that the less affluent will bear the burden of grappling with these conditions because they are unable to afford the cost of pre-natal genetic testing. Living with many of the disadvantages of poverty is an emotional strain; but that is better alleviated by programs paid for by society at large than by restricting the right of those who can afford it to avoid such tragedies.
Is first cousin intermarriage, known to cause frequent genetic disorders, a social harm that merits prohibition? There are many arguments in its favor based on cultural considerations, like shared values and personality traits. Perhaps the frequency of illness among the offspring of first cousin parents can be reduced by pre-natal genetic testing; however, for this strategy to work, pre-natal genetic testing, and possibly abortion, would also have to be consistent with the cultural values that favored first cousin intermarriage in the first place.
Tabooing first cousin intermarriage also deprives society of the diversity brought by genetic disorders. This genetic selection tool is used even in cultures that accept prenatal genetic testing and abortion. It is not labeled eugenics -- nor should the use of science to prevent avoidable disabilities.
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