Open AccessPublic Perspectives on Informed Consent for Biobanking
Author(s) -
Juli Murphy,
Joan A. Scott,
David Kaufman,
Gail Geller,
Lisa LeRoy,
Kathy Hudson
Publication year - 2009
Publication title -
american journal of public health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.284
H-Index - 264
eISSN - 1541-0048
pISSN - 0090-0036
DOI - 10.2105/ajph.2008.157099
Subject(s) - biobank , public health , informed consent , focus group , population , environmental health , medicine , family medicine , public relations , political science , alternative medicine , business , nursing , bioinformatics , pathology , marketing , biology
The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in health. We assessed the public's attitudes toward the proposed biobank, including preferences for providing informed consent. Sixteen focus groups were conducted, and themes arising from the focus groups were tested in a large, representative survey (n=4659) of the general population. Our research demonstrates that when considering participating in a genomic biobank, individuals want ongoing choices and control over access to their samples and information.