Robertson John A
The University of Texas School of Law, USA.
Am J Bioeth. 2003 Summer;3(3):W-IF1. doi: 10.1162/152651603322874762.
Progress in gene sequencing could make rapid whole genome sequencing of individuals affordable to millions of persons and useful for many purposes in a future era of genomic medicine. Using the idea of $1000 genome as a focus, this article reviews the main technical, ethical, and legal issues that must be resolved to make mass genotyping of individuals cost-effective and ethically effective. It presents the case for individual ownership of a person's genome and its formation, and shows the implications of that position for rights to informed consent and privacy over sequencing, testing, and disclosing genomic information about identifiable individuals. Legal recognition of a person's right to control his or her genome and the information that it contains is essential for further progress in applying genomic discoveries to human lives.
基因测序技术的进步有望使个人全基因组快速测序对数以百万计的民众而言变得可负担得起，并在未来的基因组医学时代用于多种目的。本文以“1000美元基因组”这一理念为重点，回顾了为使个体大规模基因分型在成本效益和伦理效益方面行之有效而必须解决的主要技术、伦理和法律问题。文章阐述了个人基因组及其形成归个人所有的观点，并展示了该立场对于在测序、检测及披露可识别个体的基因组信息方面的知情同意权和隐私权的影响。法律认可个人控制其基因组及其所含信息的权利，对于将基因组发现应用于人类生活的进一步发展至关重要。
