Introduction
It is not surprising that the revolution in the biosciences, particularly in the new human genetics, has raised concerns that human rights should be respected. In a culture committed to human rights, scientific ‘progress’ requires more than new discoveries, the formulation of illuminating new theories, the development of new biotechniques, or the invention of new biotechnological products and processes. In all its phases, from research and development through to application and use, bioscience must be compatible with respect for fundamental rights—such as the right to refuse to participate in research, the right to decide whether or not to undergo a proposed intervention or course of treatment, the right not to be discriminated against unfairly on genetic grounds, the right to control access to or circulation of confidential information about oneself, and so on.
What is surprising, perhaps, is that the bioscientific revolution has provoked a parallel demand for human dignity to be respected. As Philippe Seguin, president of the National Assembly of the French Republic, remarked in the mid-1990s, not only is there a trend towards the enactment of bioethics laws (such as the three French Acts on bioethics of July 1994), but this ‘trend illustrates a growing awareness around the world that legislators must, despite the difficulties, act to ensure that science develops with respect for human dignity and fundamental human right, and in line with national democratic traditions’ (seguin 1995: 120; our emphasis). This trend is further illustrated by, for example, the Preamble to the Council of Europe’s Convention on Human Right and Biomedicine, which requires its signatories to resolve ‘to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine’. Similarly, the Preamble to UNESCO’s Universal Declaration on the Human Genome and Human Rights states that while ‘research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and of humankind as a whole…[it is imperative]…that such research should fully respect human dignity, freedom and human right’.
IntroductionIt is not surprising that the revolution in the biosciences, particularly in the new human genetics, has raised concerns that human rights should be respected. In a culture committed to human rights, scientific ‘progress’ requires more than new discoveries, the formulation of illuminating new theories, the development of new biotechniques, or the invention of new biotechnological products and processes. In all its phases, from research and development through to application and use, bioscience must be compatible with respect for fundamental rights—such as the right to refuse to participate in research, the right to decide whether or not to undergo a proposed intervention or course of treatment, the right not to be discriminated against unfairly on genetic grounds, the right to control access to or circulation of confidential information about oneself, and so on. What is surprising, perhaps, is that the bioscientific revolution has provoked a parallel demand for human dignity to be respected. As Philippe Seguin, president of the National Assembly of the French Republic, remarked in the mid-1990s, not only is there a trend towards the enactment of bioethics laws (such as the three French Acts on bioethics of July 1994), but this ‘trend illustrates a growing awareness around the world that legislators must, despite the difficulties, act to ensure that science develops with respect for human dignity and fundamental human right, and in line with national democratic traditions’ (seguin 1995: 120; our emphasis). This trend is further illustrated by, for example, the Preamble to the Council of Europe’s Convention on Human Right and Biomedicine, which requires its signatories to resolve ‘to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine’. Similarly, the Preamble to UNESCO’s Universal Declaration on the Human Genome and Human Rights states that while ‘research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and of humankind as a whole…[it is imperative]…that such research should fully respect human dignity, freedom and human right’.
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