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

Watch the UWTV program series

Day 1

Welcome and introduction

Santayana's Lament: Ethical Issues in Genetic Screening
Presented by Norman Fost, MD, MPH
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Personalized Medicine in the Era of Genomics
Presented by Wylie Burke, MD, PhD
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The Current Revolution in Newborn Screening: New Technology, Old Controversies
Presented by Beth Tarini, MD, MS
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Expanding Newborn Screening
Presented by Duane Alexander, MD
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Panel and questions: Duane Alexander, Beth Tarini, Norm Fost, Wylie Burke
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Banking Biological Samples for Pediatric Research
Presented by Jeffrey R. Botkin, MD, MPH
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Platform presentations of selected submitted abstracts
Moderator: Douglas J. Opel, MD
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Day 2

Welcome and introduction

Testing Children for Carrier Detection and Adult-Onset Disorders
Presented by Lainie Friedman Ross, MD, PhD
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Family Communication About Cancer Genetic Testing: Parent-Child Perspectives
Presented by Kenneth P. Tercyak, PhD
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Breast Cancer and the Family: Living as a Mother and Daughter in a World of Genetics
Presented by Rebecca Fisher, MLIS, and Katherine Fisher
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Panel and questions: Lainie Friedman Ross, Kenneth Tercyak, Rebecca Fisher, Katherine Fisher
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Is There a Duty to Warn Family Members at Risk of Genetic Traits?
Presented by Kathryn M. Battuello, JD, MPH
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A Tale of Two Cities: Genomics and Parental Decision-Making
Presented by Benjamin S. Wilfond, MD
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Panel and questions: Benjamin Wilfond, Kathryn Battuello, Lainie Friedman Ross
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News Coverage

Press Releases