McEwen J E, Reilly P R
Division of Social Sciences, Ethics, and Law, Eunice Kennedy Shriver Center for Mental Retardation, Waltham, MA 02254.
Am J Hum Genet. 1992 Sep;51(3):637-47.
The purpose of this study was to review existing and proposed legislation specifically intended to regulate the collection, use, and potential misuse of genetic data. The study encompasses laws relating to confidentiality, informed consent, discrimination, and related issues. It excludes from consideration legislation relating to medical records generally that may bear indirectly on genetic information. It also excludes both legislation relating to the regulation of DNA data collection for law enforcement purposes and state laws relating to the confidentiality of data collected by newborn-screening programs. While relatively few laws that explicitly regulate the treatment of genetic information have been enacted to date, a considerable amount of activity is currently underway in the nation's legislatures. Although most of the bills under consideration are not comprehensive in scope, they reflect a growing societal awareness that the uncontrolled dissemination and use of genetic data entails significant risks.
本研究的目的是回顾专门旨在规范基因数据的收集、使用及潜在滥用情况的现有及拟议立法。该研究涵盖与保密、知情同意、歧视及相关问题有关的法律。它不考虑一般与医疗记录相关且可能间接涉及基因信息的立法。它还排除了与出于执法目的进行DNA数据收集的监管相关的立法以及与新生儿筛查项目所收集数据的保密相关的州法律。尽管迄今为止明确规范基因信息处理的法律相对较少，但美国各州立法机构目前正在开展大量活动。虽然正在审议的大多数法案在范围上并不全面，但它们反映出社会越来越意识到基因数据的无节制传播和使用会带来重大风险。
