The Department of Health Services (DHS) has created a new task force on newborn testing. The main charge of the Task Force is to make advisory recommendations to the DHS Secretary on a permanent organization structure for advice on the addition, deletion, costs, funding, informed consent and retention, use of blood samples and other issues related to newborn screening tests that identify congenital or metabolic disorders.
“Genetic testing technology is advancing rapidly,” said Karen McKeown, Division of Public Health Administrator. “This task force will help us develop a model to assure that both the science and ethical foundations of decisions about newborn screening remain solid.”
Current state law includes six criteria for evaluating such tests, including: characteristics of a genetic disorder; availability of therapies and treatment; test sensitivity, ability for mass screening and cost; ways to determine test effectiveness; screening program qualities and follow-up care options; and benefits to children and society as compared with specific testing costs. The task force is required to consider these criteria as it develops its recommendations and advise whether additional criteria are needed.
The Newborn Screening Task Force includes statewide experts in pediatrics, genetic counseling, health ethics, law and public health. Individuals who have been asked to serve include:
- Jeffrey Britton, MD, FAAP, Aurora Sheboygan Clinic
- Christine Brown, MS, National PKU Alliance
- David Dimmock, MD, Children’s Hospital of Wisconsin
- Arthur Derse, MD, JD, Medical College of Wisconsin
- Norman Fost, MD, MPH, FAAP, University of Wisconsin – Madison
- Kevin Josephson, MS, CGC, Gundersen Lutheran Medical Center
- Murray L. Katcher, MD, PhD, Wisconsin Department of Health Services
- Steven Leuthner, MD, MA, FAAP, Medical College of Wisconsin/Children’s Hospital Milwaukee
- Elizabeth McPherson, MD, Marshfield Clinic
- Joseph J. Piccione, S.Th.D., J.D., OSF Healthcare System
- Jessica Seay, MPH, Wisconsin Department of Health Services
Task force meetings and hearings will be open to the public.