Genetic testing in newborns and children: Ethical issues affecting families and physicians

June 04, 2008

The Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital will host its fourth annual international bioethics conference on July 25-26, 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: 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.
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For more information on the conference please visit http://www.seattlechildrens.org/bioethics/. Attendees and media may register for the conference at http://www.regonline.com/Checkin.asp?EventId=172893.

About Children's Hospital and Regional Medical Center

Consistently ranked as one of the best children's hospitals in the country by U.S. News & World Report, Children's serves as the pediatric referral center for Washington, Alaska, Montana and Idaho. Children's has been delivering superior patient care for 100 years, including advancing new discoveries and treatments in pediatric research, and serving as a primary teaching, clinical and research site for the Department of Pediatrics at the University of Washington School of Medicine. For more information about Children's, visit www.seattlechildrens.org.

Seattle Children's

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