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Pediatric Bioethics Conference

2008 Pediatric Bioethics Conference

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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
    View presentation (PPT)
    Watch the video

    Personalized Medicine in the Era of Genomics
    Presented by Wylie Burke, MD, PhD
    View presentation (PPT)
    Watch the video

    The Current Revolution in Newborn Screening: New Technology, Old Controversies
    Presented by Beth Tarini, MD, MS
    View presentation (PPT)

    Expanding Newborn Screening
    Presented by Duane Alexander, MD
    View presentation (PPT)

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

    Banking Biological Samples for Pediatric Research
    Presented by Jeffrey R. Botkin, MD, MPH
    View presentation (PPT)
    Watch the video

    Platform presentations of selected submitted abstracts
    Moderator: Douglas J. Opel, MD
    View presentation (PPT)

    Day 2

    Welcome and introduction

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

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

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

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

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

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

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