Genetic Testing in Newborns and Children: Ethical Issues Affecting Families and Physicians

The Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital will host its fourth annual international bioethics conference on July 25 to 26, 2008 in Seattle.


The Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital will host its fourth annual international bioethics conference on July 25 to 26, 2008 in Seattle. Conference participants will discuss the ethical implications of genetic testing including newborn screening for risk of future disease, how these tests impact families, testing prior to adoption, how results are used by families and the medical community, technological advances in testing and why the burden of genetic information often becomes a mixed blessing. “Predicting Our Future: Genetic Testing in Children and Their Families” will be held at the Bell Harbor International Conference Center on Seattle’s downtown waterfront.

“The technology, marketing and use of genetic testing is growing all the time,” said Dr. Benjamin Wilfond, the center’s director. “However, there is lack of clarity about what should be done with this increased information and how it affects families. States vary widely in their newborn screening practices. As testing capabilities continue to expand, particularly for adult onset diseases, we must consider whether parents should be able to make these decisions for their children. There continues to be more and more genetic knowledge available, and therefore we have increased obligations to use it appropriately and understand what it means to individuals, families and society as a whole.”

With a focus on the ethical, legal and medical issues affecting children and their families, this conference will address many questions related to genetic testing such as:

  • Should parents be able to make adoption decisions based upon genetic test results?
  • Which adult-onset diseases should newborns be tested for? Should these tests be mandatory or optional?
  • How does advance knowledge of possible or probable disease affect children and their parents?
  • When is too much information undesirable?
  • What is the moral obligation to inform extended family members of test results that may impact them?
  • When should children be able to participate in decisions about what to be tested for and when to learn results? What if a minor’s views differ from those of their parent or legal guardian?

Guest speakers include Dr. Duane Alexander, director of the National Institute of Child Health and Human Development at the National Institutes of Health; Kathryn Battuello, JD, lecturer and author; Dr. Jeffrey Botkin from the Division of Medical Ethics at the University of Utah; Dr. Wylie Burke, chair of the Department of Medical History and Ethics at the University of Washington School of Medicine; Dr. Norman Fost, director of the Program in Medical Ethics at the University of Wisconsin; Dr. Lainie Friedman Ross, Associate Director of the MacLean Center for Clinical Medical Ethics at the University of Chicago; Dr. Beth Tarini from the University of Michigan; Ken Tercyak, PhD, from the Pediatric Oncology Division at Georgetown University Hospital; and Dr. Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital. They will be joined by Rebecca and Katherine Fisher, a mother and daughter who will speak first-hand about their own experiences with breast cancer and the genetic test results that affect their family.

For more information on the conference, please visit Bioethics.

About Seattle Children’s

Seattle Children’s Hospital, Foundation and Research Institute together deliver superior patient care, advance new discoveries and treatments through pediatric research, and raise funds to create better futures for patients. Consistently ranked as one of the top 10 children’s hospitals in the country by U.S. News & World Report, Seattle Children’s Hospital specializes in meeting the unique physical, emotional and developmental needs of children from infancy through young adulthood. Through the collaboration of physicians in nearly 60 pediatric subspecialties, Seattle Children’s Hospital provides inpatient, outpatient, diagnostic, surgical, rehabilitative, behavioral, and emergency and outreach services to families from around the world.

Located in downtown Seattle’s biotech corridor, Seattle Children’s Research Institute is pushing the boundaries of medical research to find cures for pediatric diseases and improve outcomes for children all over the world. Internationally recognized investigators and staff at the research institute are advancing new discoveries in cancer, genetics, immunology, pathology, infectious disease, injury prevention, bioethics and much more.

Seattle Children’s Hospital and Research Foundation and Seattle Children’s Hospital Guild Association work together to gather community support and raise funds for uncompensated care, clinical care and research. The foundation receives nearly 80,000 gifts each year, from lemonade stand proceeds to corporate sponsorships. Seattle Children’s Hospital Guild Association is the largest all-volunteer fundraising network for any hospital in the country, serving as the umbrella organization for 450 groups of people who turn an activity they love into a fundraiser. Support from the foundation and guild association makes it possible for Seattle Children’s care and research teams to improve the health and well-being of all kids.

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