Human Geneticists’ Practices, Preferences, and Beliefs about Biobanks and Large Cohort Studies

Red glass double helixes
Award Amount
$383,710
Award number
Project dates
08/16/10 to 05/31/12

Principal investigator(s)

David Kaufman, PhD (Johns Hopkins University)

Advisory Board Member: Susan M. Wolf, JD (University of Minnesota)

Biobanks containing participants' clinical data and genetic information have become important tools in genomic research to understand common, complex diseases, but they raise a number of ethical issues. In order to ensure that the public benefits from genomic research, it is necessary to understand the practices of researchers who are making use of biobank data. This systematic study of genetic researchers' views and practices with respect to biobank research informed polices to maximize the public health benefits of genomic research.