Self-critical federal science? The ethics experiment within the US Human Genome Project
Self-critical federal science? The ethics experiment within the US Human Genome Project
复制标题
DOI：
10.1017/s0265052500003460
复制
发表时间：
1996-06-01
影响因子：
0.4
通讯作者：
Juengst, ET
中科院分区：
文献类型：
--
作者：
Juengst, ET
1988年10月1日，在共同发现DNA分子结构35年后，詹姆斯·沃森博士在美国科学政策中发起了一项前所未有的实验。在记者招待会上回答记者提问时，他单方面拨出了新启动的人类基因组计划预算的3%至5%，用于支持人类遗传学新进展的伦理、法律的和社会影响的研究。人类基因组计划（HGP）为遗传学家提供了人类染色体的分子图谱，他们可以用这些图谱来识别特定的人类基因，这将加速一类基于DNA的诊断和风险评估测试的扩散，这些测试已经给临床医生带来了职业道德和健康政策方面的挑战。沃森说：“问题现在就在我们身边，与基因组计划无关，但它们将与基因组计划联系在一起。”“我们应该投入真实的资金来讨论这些问题。”到1994年，“ELSI计划”（“伦理、法律的和社会影响”的简称）已经花费了近2000万美元来完成其使命，并因其成就而受到赞扬和批评。
On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project (HGP), by providing geneticists with the molecular maps of the human chromosomes that they use to identify specific human genes, will speed the proliferation of a class of DNA-based diagnostic and risk-assessment tests that already create professional ethical and health-policy challenges for clinicians. “The problems are with us now, independent of the genome program, but they will be associated with it,” Watson said. “We should devote real money to discussing these issues.” By 1994, the “ELSI program” (short for “Ethical, Legal, and Social Implications”) had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments.