Geneticizing disability: the Human Genome Project and the commodification of self.
This article explores the potential impact upon people with disability of some of the technological information being uncovered by the Human Genome Project. While the project has been promoted as promising positive benefits to society, its effect, in our present values climate, is potentially damaging. While we can map impairment, we cannot, as yet, cure it. And, in a society which embraces values such as utilitarianism and economic rationalism, we are choosing more and more to eliminate rather than care. We are seeing a conceptual transformation--the geneticization of self--which has enormous implications for the lives of people with disability. The author argues that scientific endeavor, which has been constructed as occurring within a culture of impartiality and empiricism, actually operates within an uncontested value base which devalues disability. She concludes that the Human Genome Project needs to be reframed within a broadened ethical framework of inclusion.
Fitzgerald
J
J
Queensland Advocacy Incorporated, Transit Centre, Brisbane, Australia. qai@mailbox.uq.edu.au
D001294:Attitude to Health; D001675:Bioethics; D032821:Commodification; D006233:Persons with Disabilities / Q000523:psychology*; D005053:Eugenics / Q000639:trends; D033141:Genetic Determinism; D030342:Genetic Diseases, Inborn / Q000517:prevention & control / Q000523:psychology; D030661:Genetic Privacy; D014644:Genetic Variation; D005824:Genetics, Behavioral; D006262:Health; D016045:Human Genome Project; D006801:Humans; D011287:Prejudice; D012935:Social Justice; D012945:Social Values