Genomic Research and Human Subject Privacy

作者: Zhen Lin , Art B Owen , Russ B Altman

DOI: 10.1126/SCIENCE.1095019

关键词:

摘要: Public genetic sequence databases are a critical part of our academic biomedical research infrastructure. However, human data should only be made public if we can adequately protect the privacy subjects. Individual genomic (such as SNPs) quite "identifiable" using common definitions, while efforts to understand disease susceptibility or therapeutic opportunity require access large sets. The authors this Policy Forum argue that surprisingly small amounts identifiable. Therefore, special challenges posed by need addressed with new policies creative technical approaches.

参考文章(10)
Hhs Office for Civil Rights, Standards for privacy of individually identifiable health information. Final rule. Federal Register. ,vol. 67, pp. 53181- 53273 ,(2002)
Leon Cornelis Roelof Johannes Willenborg, Ton de Waal, Elements of Statistical Disclosure Control ,(2000)
Virginia Barbour, UK Biobank: a project in search of a protocol? The Lancet. ,vol. 361, pp. 1734- 1738 ,(2003) , 10.1016/S0140-6736(03)13377-6
Loucinda Carey, Luba Mitnik, Trends in DNA forensic analysis. Electrophoresis. ,vol. 23, pp. 1386- 1397 ,(2002) , 10.1002/1522-2683(200205)23:10<1386::AID-ELPS1386>3.0.CO;2-M
T E Klein, J T Chang, M K Cho, K L Easton, R Fergerson, M Hewett, Z Lin, Y Liu, S Liu, D E Oliver, D L Rubin, F Shafa, J M Stuart, R B Altman, Integrating genotype and phenotype information: an overview of the PharmGKB project Pharmacogenomics Journal. ,vol. 1, pp. 167- 170 ,(2001) , 10.1038/SJ.TPJ.6500035
Melissa A Austin, Sarah E Harding, Courtney E McElroy, Monitoring ethical, legal, and social issues in developing population genetic databases. Genetics in Medicine. ,vol. 5, pp. 451- 457 ,(2003) , 10.1097/01.GIM.0000093976.08649.1B
Wen-Hsiung Li, Lori A. Sadler, Low nucleotide diversity in man. Genetics. ,vol. 129, pp. 513- 523 ,(1991) , 10.1093/GENETICS/129.2.513
Mary R. Anderlik, Mark A. Rothstein, Privacy and confidentiality of genetic information: what rules for the new science? Annual Review of Genomics and Human Genetics. ,vol. 2, pp. 401- 433 ,(2001) , 10.1146/ANNUREV.GENOM.2.1.401