Advertisement
AJPH
HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS
QUICK SEARCH:   [advanced]


     

AJPH First Look, published online ahead of print Oct 15, 2009
This Article
Right arrow Figures Only
Right arrow Full Text
Right arrow Full Text (PDF)
Right arrow All Versions of this Article:
AJPH.2008.157099v1
99/12/2128    most recent
Right arrow Submit a response
Right arrow purchase articles
Right arrow View Shopping Cart
Right arrow Alert me when this article is cited
Right arrow Alert me when eLetters are posted
Right arrow Alert me if a correction is posted
Services
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Download to citation manager
Right arrow reprints & permissions
Right arrow Get other permissions
Google Scholar
Right arrow Articles by Murphy, J.
Right arrow Articles by Hudson, K.
PubMed
Right arrow PubMed Citation
Right arrow Articles by Murphy, J.
Right arrow Articles by Hudson, K.
Related Collections
Right arrow Ethics
Right arrow Genetics
Right arrow Qualitative Research
Right arrow Surveys
December 2009, Vol 99, No. 12 | American Journal of Public Health 2128-2134
© 2009 American Public Health Association
DOI: 10.2105/AJPH.2008.157099

HEALTH POLICY AND ETHICS

Public Perspectives on Informed Consent for Biobanking

Juli Murphy, MS, Joan Scott, MS, CGC, David Kaufman, PhD, Gail Geller, MHS, ScD, Lisa LeRoy, PhD, MBA and Kathy Hudson, PhD

Juli Murphy, Joan Scott, David Kaufman, and Kathy Hudson are with the Genetics and Public Policy Center, Johns Hopkins University, Washington, DC. Gail Geller is with the Johns Hopkins School of Medicine, Baltimore, MD. Lisa LeRoy is with Abt Associates, Cambridge, MA.

Correspondence: Correspondence should be sent to Juli Murphy, MS, Genetics and Public Policy Center, Johns Hopkins University, 1717 Massachusetts Ave, NW, Suite 530, Washington, DC 20036 (e-mail: jmurph46{at}jhu.edu). Reprints can be ordered at http://www.ajph.org by clicking the "Reprints/Eprints" link.

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.






HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS
Copyright © 2009 by the American Public Health Association