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Agenda

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Predicting Our Future: Genetic Testing in Children and Their Families

Day 1 — Friday, July 25, 2008

Bell Harbor International Conference Center
2211 Alaskan Way
Pier 66
Seattle, WA 98121

Moderator: Douglas S. Diekema, MD, MPH

8 a.m.
Sign-in and Continental Breakfast
8:30 a.m.
Welcome and Introduction
8:45 a.m.
Santayana’s Lament: Ethical Issues in Genetic Screening
Norm Fost, MD, MPH
9:30 a.m.
Personalized Medicine in the Era of Genomics
Wylie Burke, MD, PhD
10 a.m.
Break
10:30 a.m.
The Current Revolution in Newborn Screening: New Technology, Old Controversies
Beth Tarini, MD, MS
11 a.m.
Expanding Newborn Screening
Duane Alexander, MD
11:30 a.m.
Panel and Questions: Duane Alexander, Beth Tarini, Norm Fost, Wylie Burke
12 p.m.
Lunch
1:15 p.m.
Afternoon Breakout Sessions
Banking Biological Samples for Pediatric Research
Jeffrey R. Botkin, MD, MPH
Genetic Testing Prior to Adoption: In Whose Interest?
Lainie Friedman Ross, MD, PhD
The Treatment of Children with Trisomy 13 and Trisomy 18: Standards of Care, Professional Autonomy and Parental Choice
Susan Albersheim, MD, Annie Janvier, MD, FRCPC, and Laura Loftis, MD
2:15 p.m.
Platform presentations of selected submitted abstracts
Moderator: Douglas J. Opel, MD
3:30 p.m.
Adjourn

Day 2 — Saturday, July 26, 2008

Bell Harbor International Conference Center
2211 Alaskan Way
Pier 66
Seattle, WA 98121

Moderator: Maureen Kelley, PhD

8 a.m.
Sign-in and Continental Breakfast
8:30 a.m.
Welcome and Introduction
8:45 a.m.
Testing Children for Carrier Detection and Adult-Onset Disorders
Lainie Friedman Ross, MD, PhD
9:30 a.m.
Family Communication About Cancer Genetic Testing: Parent-Child Perspectives
Kenneth P. Tercyak, PhD
10 a.m.
Break
10:30 a.m.
Breast Cancer and the Family: Living as a Mother and Daughter in a World of Genetics
Rebecca Fisher, MLIS, and Katherine Fisher
11:15 a.m.
Panel and Questions: Lainie Friedman Ross, Kenneth Tercyak, Rebecca Fisher, Katherine Fisher
11:45 a.m.
Lunch
1 p.m.
Is There a Duty to Warn Family Members at Risk of Genetic Traits?
Kathryn M. Battuello, JD, MPH
1:30 p.m.
Genetics and Personalized Health Care for Children: Promise or Peril?
Benjamin S. Wilfond, MD
2 p.m.
Panel and Questions: Benjamin Wilfond, Kathryn Battuello, Lainie Friedman Ross
2:30 p.m.
Concluding Comments and Adjourn