O'Brien Stephen J
Laboratory of Genomic Diversity, National Cancer Institute, Frederick, Maryland 21702-1201, USA.
Annu Rev Genomics Hum Genet. 2009;10:193-209. doi: 10.1146/annurev-genom-082908-150133.
An ethical quandary is emerging over custodianship of and access to DNA specimens and attached data, clinical and genetic, held in large disease cohort collections. The balance of patients' rights and science/society's quest for broad open access must be resolved in order to realize the promise of gene association studies of complex human disease. A way forward may be to convene a colloquium of international medical and science organizations charged with developing global consensus guidance and ethical principles for access to and use of genomic biobanks.
在大型疾病队列研究中所保存的DNA样本以及相关临床和基因数据的保管与获取方面,正出现一个伦理困境。为了实现复杂人类疾病基因关联研究的前景,必须解决患者权利与科学界/社会对广泛开放获取的追求之间的平衡问题。前进的方向或许是召集国际医学和科学组织的座谈会,负责制定关于获取和使用基因组生物样本库的全球共识指南及伦理原则。