Fitzgerald J
Queensland Advocacy Incorporated, Transit Centre, Brisbane, Australia.
Issues Law Med. 1998 Fall;14(2):147-63.
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.
本文探讨了人类基因组计划所揭示的一些技术技术信息对残疾人可能产生的影响。尽管该计划被宣传为有望给社会带来积极益处，但其在我们当前的价值观环境下，可能具有破坏性。虽然我们能够绘制出损伤情况，但目前还无法治愈它。而且，在一个崇尚功利主义和经济理性主义等价值观的社会中，我们越来越多地选择消除而非照料。我们正在目睹一种观念转变——自我的基因化，这对残疾人的生活有着巨大影响。作者认为，被构建为在公正和经验主义文化中进行的科学努力，实际上是在一个毫无争议的、贬低残疾价值的价值基础上运作。她得出结论，人类基因组计划需要在一个更广泛的包容性伦理框架内重新构建。
