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

[Guest guest]

Genetic testing in newborns and children: Ethical issues affecting

families and physicians

http://www.eurekalert.org/pub_releases/2008-06/char-gti060408.php

Leaders in the field debate tough ethical issues surrounding genetic

tests for adoption, adult-onset diseases, tissue banking and newborn

screening

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. 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 , director of the National

Institute of Child Health and Human Development at the National

Institutes of Health; Battuello, JD, lecturer and author; Dr.

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 town

University Hospital; and Dr. Wilfond, director of the

Treuman Katz Center for Pediatric Bioethics at Seattle Children's

Hospital. They will be joined by and 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.