Pediatric Bioethics Conference

2008 Pediatric Bioethics Conference

Predicting Our Future: Genetic Testing in Children and Their Families

The Treuman Katz Center for Pediatric Bioethics at Seattle Children's hosted its fourth annual international pediatric bioethics conference, "Predicting Our Future: Genetic Testing in Children and Their Families," on July 25 and 26, 2008, in Seattle. The conference featured nationally recognized speakers in bioethics and drew more than 200 participants from across the nation to discuss many controversial and ethical implications of genetic testing in children.

Conference Introduction

Genetic testing in children can be used for diagnosis, the prediction of future disease or the selection of the best therapy for an individual child.

Genetic testing traditionally refers to standard medical tests used for the identification of rare genetic conditions, such as cystic fibrosis and sickle-cell anemia. Today, however, new DNA-based tests are even being developed to determine a child's risk of having common medical conditions, such as asthma and diabetes, and their possible response to treatment.

The results of all these tests can have important implications for the child's immediate and extended family members, raising questions about respecting privacy and potential obligations to inform other family members.

With technology rapidly advancing - bringing about more genetic tests - many ethical and policy questions must be addressed to appropriately use these new tools of genetic assessment in children:

  • Which tests should be required of all newborns, and which tests should not be permitted until the child is an adult?
  • Should parents be able to test young children for the risk of future diseases, such as breast cancer or Alzheimer's disease?
  • What obligations are there to inform family members about genetic test results that may impact them?
  • What if adolescents and their parents disagree about genetic testing decisions?
  • What genetic tests should be available to prospective parents before the adoption of a child?

Below you will find the archived webcast presentations and more, so you can join in the ongoing exploration of these ethical questions.

2008 Pediatric Bioethics Conference Presentations

Day 1

Welcome and introduction  

Santayana's Lament: Ethical Issues in Genetic Screening 
Presented by Norman Fost, MD, MPH
Watch the video  

Personalized Medicine in the Era of Genomics 
Presented by Wylie Burke, MD, PhD
Watch the video  

The Current Revolution in Newborn Screening: New Technology, Old Controversies 
Presented by Beth Tarini, MD, MS

Expanding Newborn Screening 
Presented by Duane Alexander, MD

Panel and questions: Duane Alexander, Beth Tarini, Norm Fost, Wylie Burke

Banking Biological Samples for Pediatric Research 
Presented by Jeffrey R. Botkin, MD, MPH
Watch the video  

Platform presentations of selected submitted abstracts 
Moderator: Douglas J. Opel, MD

Day 2

Welcome and introduction  

Testing Children for Carrier Detection and Adult-Onset Disorders 
Presented by Lainie Friedman Ross, MD, PhD
Watch the video  

Family Communication About Cancer Genetic Testing: Parent-Child Perspectives 
Presented by Kenneth P. Tercyak, PhD
Watch the video  

Breast Cancer and the Family: Living as a Mother and Daughter in a World of Genetics 
Presented by Rebecca Fisher, MLIS, and Katherine Fisher
Watch the video  

Panel and questions: Lainie Friedman Ross, Kenneth Tercyak, Rebecca Fisher, Katherine Fisher

Is There a Duty to Warn Family Members at Risk of Genetic Traits? 
Presented by Kathryn M. Battuello, JD, MPH
Watch the video  

A Tale of Two Cities: Genomics and Parental Decision-Making 
Presented by Benjamin S. Wilfond, MD
Watch the video  

Panel and questions: Benjamin Wilfond, Kathryn Battuello, Lainie Friedman Ross

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