What Is NUgene?
The NUgene Project is a genomic biobank sponsored by the Center for Genetic Medicine at Northwestern University in partnership with Northwestern Medicine. NUgene collects and stores DNA samples and associated health information from patients at Northwestern Medicine-affiliated hospitals and clinics to be used by researchers to examine the role genes play in the development and treatment of common diseases. The health information collected is both self-reported and periodically obtained from the participant's electronic medical record at Northwestern. The NUgene Project is IRB (Institutional Review Board) approved and compliant with HIPAA (Health Insurance Portability and Accountability Act). NUgene is committed to protecting the privacy of individual participants and the confidentiality of their data.
Conducting a large, multi-site survey about patients’ views on broad consent: challenges and solutions
Maureen E. Smith, Saskia C. Sanderson, Kyle B. Brothers, Melanie F. Myers, Jennifer McCormick, Sharon Aufox, Martha J. Shrubsole, Nanibaá A. Garrison, Nathaniel D. Mercaldo, Jonathan S. Schildcrout, Ellen Wright Clayton, Armand H. Matheny Antommaria, Melissa Basford, Murray Brilliant, John J. Connolly, Stephanie M. Fullerton, Carol R. Horowitz, Gail P. Jarvik, Dave Kaufman, Terri Kitchner, Rongling Li, Evette J. Ludman, Catherine McCarty, Valerie McManus, Sarah Stallings, Janet L. Williams and Ingrid A. Holm
Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US
Saskia C. Sanderson, Kyle B. Brothers, Nathaniel D. Mercaldo, Ellen Wright Clayton, Armand H. Matheny Antommaria, Sharon A. Aufox, Murray H. Brilliant, Diego Campos, David S. Carrell, John Connolly, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, David Kaufman, Terrie E. Kitchner, Rongling Li, Evette J. Ludman, Catherine A. McCarty, Jennifer B. McCormick, Valerie D. McManus, Melanie F. Myers, Aaron Scrol, Janet L. Williams, Martha J. Shrubsole, Jonathan S. Schildcrout, Maureen E. Smith, Ingrid A. Holm
Who We Are
Vice Dean Scientific Affairs and Graduate Education
Professor of Medical Genetics