FOR IMMEDIATE RELEASE
March 11, 2013
CONTACT: Jennifer Miller, (608) 266-1683
NEWBORN SCREENING TASK FORCE REQUESTS INPUT
AT MARCH 18 FORUM IN MILWAUKEE
MADISON—The state’s Newborn Screening Task Force is holding a community
forum to provide an opportunity for input on a variety of questions at
its next meeting on Monday, March 18, from 10 a.m. to 2 p.m. at the
Zilber School of Public Health, 1240 N. 10th Street, Room 109,
“The community forum gives families, health care providers and
administrators, policy makers and others the opportunity to respond to
Task Force questions and help guide the Task Force as it considers
decision-making models for newborn screening tests,” said Karen McKeown,
Wisconsin Division of Public Health Administrator.
The Task Force was formed last fall to advise the Department of
Health Services (DHS) Secretary by May 31, 2013, on a potential
structure for evaluation of newborn screening tests, and on criteria for
determining which congenital or metabolic disorders should be added to
or deleted from the mandated newborn screening tests in the future. The
Task Force has not been asked to advise on specific tests, payment
structures, sample retention requirements or mandatory infectious
Current state law includes six criteria for evaluating newborn
screening tests: 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 Task Force is seeking input on questions such as:
- Who should be included on an advisory committee for newborn
- What kind of evidence should be required for including a test?
- Should tests be done that identify disorders that do not arise
until adulthood (e.g., Alzheimer’s Disease or breast cancer)?
- Should tests be done that identify disorders for which there is
no proven effective treatment (e.g., muscular dystrophy)?
- Should unintended results of tests be reported to parents (e.g.,
carrier status for sickle trait)?
- Should tests be included whose major purpose is to inform
genetic counseling for the parents?
- Are the newborn screening criteria listed in state law adequate?
- Should consent be required for newborn screening tests of proven
- Should consent be required for tests of uncertain benefit?
- Should extraordinarily rare disorders be tested for?
Those unable to attend the forum can email comments to:
DHSNBSTaskForce@dhs.wisconsin.gov, or mail them to: Department of Health
Services, Newborn Screening Program, Room 250, 1 West Wilson Street,
P.O. Box 2659, Madison, WI, 53701-2659, and indicate if the comments
should be read at the community forum.
For more information on statutes regarding newborn screening tests in
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May 02, 2013