作者
Susan M Wolf, Brittney N Crock, Brian Van Ness, Frances Lawrenz, Jeffrey P Kahn, Laura M Beskow, Mildred K Cho, Michael F Christman, Robert C Green, Ralph Hall, Judy Illes, Moira Keane, Bartha M Knoppers, Barbara A Koenig, Isaac S Kohane, Bonnie LeRoy, Karen J Maschke, William McGeveran, Pilar Ossorio, Lisa S Parker, Gloria M Petersen, Henry S Richardson, Joan A Scott, Sharon F Terry, Benjamin S Wilfond, Wendy A Wolf
发表日期
2012/4
期刊
Genetics in Medicine
卷号
14
期号
4
页码范围
361-384
出版商
Nature Publishing Group
简介
Biobanks and archived data sets collecting samples and data have become crucial engines of genetic and genomic research. Unresolved, however, is what responsibilities biobanks should shoulder to manage incidental findings and individual research results of potential health, reproductive, or personal importance to individual contributors (using “biobank” here to refer both to collections of samples and collections of data). This article reports recommendations from a 2-year project funded by the National Institutes of Health. We analyze the responsibilities involved in managing the return of incidental findings and individual research results in a biobank research system (primary research or collection sites, the biobank itself, and secondary research sites). We suggest that biobanks shoulder significant responsibility for seeing that the biobank research system addresses the return question explicitly. When …
引用总数
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