ELSI Workshop, November 13-14, 2005

National Twin Registry

Agenda and Welcome Letter

• ELSI workshop welcome letter  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/ELSIworkshop-welcome-letter-05-11-10.pdf)   (16KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/ELSIworkshop-welcome-letter-05-11-10.doc)   (36KB)]
• Workshop agenda  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/TR-ELSIWorkshopAgenda.pdf)   (15KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/TR-ELSIWorkshopAgenda.doc)   (37KB)]

List of Workshop Members

[ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/ELSIWorkshop-members.pdf)   (8KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/ELSIWorkshop-members.doc)   (26KB)]

Paul Lombardo, JD, Ph.D.  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Lombardo-Bio.pdf)   (20KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Lombardo-Bio.doc)   (30KB)]
University of Virginia

pal8g@hscmail.mcc.virginia.edu

Linda Corey, Ph.D.  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Corey-Bio.pdf)   (12KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Corey-Bio.doc)   (25KB)]
Virginia Commonwealth University

corey@mail2.vcu.edu

Jack Goldberg, Ph.D.  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Goldberg-Bio.pdf)   (18KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Goldberg-Bio.doc)   (26KB)]
University of Washington

goldie1@u.washington.edu

Jeffrey Botkin, M.D., M.P.H.  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Botkin-bio.pdf)   (17KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Botkin-bio.doc)   (24KB)]
University of Utah

botkins@howard.med.utah.edu

Mildred Cho, Ph.D.  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Cho-bio.pdf)   (18KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Cho-bio.doc)   (24KB)]
Stanford University

micho@stanford.edu

Jessica Hobart  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Hobart-Bio.pdf)   (18KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Hobart-Bio.doc)   (24KB)]
Genetic Alliance, Johns Hopkins University - Masters Candidate

ess_hobart@post.harvard.edu

Goldie Byrd, Ph.D.  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Byrd-Bio.pdf)   (18KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/Byrd-Bio.doc)   (25KB)]
NC A&T State University

gsbyrd@ncat.edu

Robert Millikan, DVM, Ph.D.  [ .pdf (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/millikan-bio.pdf)   (19KB), .doc (http://www.niehs.nih.govnews/events/pastmtg/2005/twin/docs/millikan-bio.doc)   (26KB)]
University of North Carolina at Chapel Hill

bob_millikan@unc.edu

Presentations

• Community Involvement in a Study of Alzheimer’s disease in African Americans
• Data sharing and security
• Twin Registries: Ethical, Legal and Social Issues
• Ethical Issues in Recruitment for Genetic Research
• A Model for Storing Data and Biological Samples
• Preliminary Report - Summary of ELSI issues from twin registry directors survey
• The Effect of Race on Survey Response Rates

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