2009 ATCG Meeting

Trust It or Trash It?
Creating and Assessing Genetic Health Information
September 22, 2009
ATCG icon
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, MD 20852

Continuing Education Credits Available for Physicians and Genetic Counselors

Hosted by the Access to Credible Genetics Resources Network (ATCG), "Trust It or Trash It?" Creating & Assessing Genetic Health Information was held on Tuesday, September 22, 2009. This meeting brought together individuals involved with conveying complex information to different types of audiences. We engaged the audience in discussing issues around defining information quality, choosing content appropriately, and utilizing new technologies effectively for education. The audience included individuals interested in education, evidence-based care, communication, and health information.

Presenters:
Nickolas Barris, Concept Web Alliance
Amanda Bergner, Johns Hopkins University
Les Biesecker, National Human Genome Research Institute
Miriam Blitzer, University of Maryland School of Medicine
Mark S. Boguski, Harvard Medical School
Jeffrey Botkin, University of Utah
Jayne Dixon-Weber, National Fragile X Foundation
Andrew Faucett, Emory University
Patricia Furlong, Parent Project Muscular Dystrophy
Alejandra Gepp, National Council of La Raza
Nancy Green, Columbia University Medical Center
Carol Greene, University of Maryland School of Medicine
Ben Heywood, Patients Like Me (invited)
Therese Ingram Nissen, National Coalition for Health Professional Education in Genetics
Howard Levy, Johns Hopkins University
Joseph D. McInerney, National Coalition for Health Professional Education in Genetics
Bonnie Pagon, GeneTests
Paula Raimondo, Health Sciences and Human Services Library, University of Maryland
Kate Reed, National Coalition for Health Professional Education in Genetics
Sharon F. Terry, Genetic Alliance
Meredith Weaver, University of Maryland School of Medicine

Trust it or Trash it?
Creating and Assessing Genetic Health Information

7:30 AM	Registration and Continental Breakfast
8:30 AM	Welcome and Introduction Sharon F. Terry, MA, President & CEO, Genetic Alliance
9:00 AM	Keynote Nickolas Barris, Concept Web Alliance
9:30 AM	Panel Discussion on Quality
	Introduction Miriam Blitzer, PhD, Head, Division of Human Genetics, University of Maryland School of Medicine
	Moderator Andrew Faucett, MS, CGC, Assistant Professor, Emory University
	Theory: How is quality assessed in genetics and health? Jeffrey Botkin, MD, MPH, Professor, Pediatrics and Medical Ethics, University of Utah
	Practice: A model of the collection of quality information Bonnie Pagon, MD, Editor-in-Chief, GeneReviews
	Visioning: Where are we going? Nickolas Barris, Concept Web Alliance
11:00 AM	Break
11:15 AM	Panel Discussion on Experts
	Introduction Carol Greene, MD, Director, Pediatric Genetics Clinic, University of Maryland School of Medicine
	Moderator Nancy Green, MD, Associate Dean, Columbia University Medical Center
	Patient/parent/consumer perspective Patricia Furlong, BSN, MS, President & Executive Director, Parent Project Muscular Dystrophy
	Provider perspective Howard Levy, MD, PhD, Assistant Professor, Johns Hopkins University
	Researcher perspective Les Biesecker, MD, Senior Investigator and Chief, Genetic Disease Research Branch, National Human Genome Research Institute
12:45 PM	Lunch
1:45 PM	Panel Discussion on Content
	Introduction Kate Reed, MPH, ScM, CGC, Project Director, NCHPEG
	Moderator Joseph McInerney, MA, MS, Executive Director, NCHPEG
	Theory: How do people think about information? Amanda Bergner, MS, CGC, Genetic Counselor, Johns Hopkins University
	Practice: Advocacy organization experience Jayne Dixon-Weber, Coordinator of Support Services, National Fragile X Foundation
	Visioning: What’s the next level shift? Ben Heywood, MBA, Co-Founder, President, Patients Like Me (invited)
3:15 PM	Break
3:30 PM	Panel Discussion on Usability
	Introduction Meredith Weaver, MS, ScM, CGC, Genetic Counselor, University of Maryland School of Medicine
	Moderator Alejandra Gepp, MA, Program Coordinator, Institute for Hispanic Health, National Council of La Raza
	Theory: What do we know about how people interact with information? Paula Raimondo, MLS, Head, Liaison and Outreach Services Department, Health Sciences and Human Services Library, University of Maryland
	Practice: What issues need to be addressed in presenting information? Therese Ingram Nissen, MA, Instructional Designer, NCHPEG
	Visioning: What doors do social media open for disseminating information? Mark Boguski, MD, PhD, Department of Pathology, Harvard Medical School/Beth Israel Deaconess
5:00 PM	Next Steps Sharon F. Terry, MA President & CEO, Genetic Alliance
6:00 PM	Dinner Debate: Wisdom of the Crowds: Foolhardy or Brilliant? Nickolas Barris, Concept Web Alliance Mark Boguski, MD, PhD, Department of Pathology, Harvard Medical School/Beth Israel Deaconess Ben Heywood, MBA, Patients Like Me (invited)

Continuing Education Credits Available!

Genetic Counselors
This event was submitted to the National Society of Genetic Counselors (NSGC) for approval of Category 1 CEUs. The American Board of Genetic Counseling (ABGC) accepts CEUs approved by NSGC for purposes of recertification. Approval for the requested CEUs and Contact Hours is currently pending.

Physicians:
The American Medical Association is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. Physicians should only claim credit commensurate with the extent of their participation in the activity.

This meeting is supported by cooperative agreement # 5U10DD525036-05 with the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC). The content of this webpage is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of CDC.