Expanding State Newborn Screening Panels in
Missouri and Iowa
by OluwaFunke Akinsola, associate specialist, Newborn Screening and Genetics
The following resources have been developed by
APHL Newborn Screening and Genetics workgroups
for states to use in consideration of expanding their
• Adding Conditions to State Newborn Screening Panels:
Recommendations for Decision Makers
• Fact Sheet on Creating an Effective State Review
• NewSTEPs Webinars on Laboratory and Follow-up/
Education Considerations for Implementation of New
Conditions (archived on NewSTEPs.org>News and
The standing committees meet at least once a
year and make recommendations to the Genetic
Advisory Committee regarding emerging issues
and the direction of the NBS program.
ith the help of new screening
technologies, state newborn screening
(NBS) programs have the potential to
expand their screening panels to include newly
added disorders to the Recommended Uniform
Screening Panel (RUSP), a list of conditions
recommended for routine newborn screening by
the US Secretary of Health and Human Services.
Currently, the RUSP includes 34 core conditions
and 26 secondary conditions. While some states
follow the RUSP in adding new conditions to their
NBS panels, other states consider the RUSP as
just one component of their evaluation, engaging
experts and other stakeholders in their evidence
review prior to adding new disorders.
Below are perspectives from Missouri and Iowa on
their procedures to expand their NBS panels and
the role of advisory committees in their decision-
Missouri State Public Health
The process to add conditions to NBS panels may
vary from state to state, but generally, states will
pursue an evaluative course of action to assess the
value and feasibility of adding a condition to their
panels. Newborn screening advisory committees
play a key role in facilitating this process in most
states. A total of 46 NBS programs have a state
advisory committee to inform NBS decisions and
74% of these committees meet at least twice
The use of an advisory committee is valuable
in convening relevant stakeholders to assess
data, engage in dialogue and present a variety
of perspectives. Committee members bring
their expertise and experience to increase
understanding of the subject matter, develop
effective public action and build better
relationships as they work toward common goals.
The importance of public participation in decision-
making processes cannot be underestimated.
As the first state in the country to implement
population-wide screening for several lysosomal
storage disorders (Pompe disease, Fabry disease,
Gaucher disease and mucopolysaccharidosis type I
(MPS-I)) in January 2013, Missouri continues to lead
the US in screening for additional new disorders.
Under MO House Bill 66, the state will expand its
newborn screening requirements to include spinal
muscular atrophy (SMA) and Hunter syndrome
(MPS-II) by January 1, 2019. Currently, House Bill 66
has been voted as “do pass” by both the House and
Senate committees, which puts it one step closer
to becoming law.
To guide the Missouri NBS program in identifying
conditions for its NBS panel, the Missouri Genetic
Advisory Committee, a governor-appointed
advisory board, convenes at least once a year.
Committee members are geneticists, specialty
medical care providers, parents of affected
children, primary medical care providers, genetic
counselors, public health professionals and other
stakeholders involved in the identification and
care of infants with screened genetic conditions.
The Advisory Committee consists of five standing
committees, each focusing on a specific health
issue: Newborn Screening, Newborn Hearing,
Cystic Fibrosis, Sickle Cell Anemia and Hemophilia.
Iowa Department of Public Health
Iowa’s Congenital and Inherited Disorder Advisory
Committee (CIDAC) advises the director of the
Iowa Department of Public He alth on issues
related to genetics, hereditary and congenital
conditions. CIDAC also makes recommendations
on the design and implementation of genetic
programs within the state. Committee members
range from physicians, nurses, legislators, parents,
consumers and educators to representatives from
community-based organizations. CIDAC convenes
quarterly and receives input from subcommittees
on managing the NBS panel, informed consent and
residual NBS specimens.
CIDAC reviews nominations for new conditions
to be added to the state panel. Nominations must
detail the rationale for adding the condition,
including the nature of the condition, the net
benefit of screening, the technical feasibility of
screening and the current screening status of the
condition in other states.
CIDAC utilizes the classic Wilson and Jungner
screening criteria, and evaluates the potential
impact of integrating the test into existing NBS
protocols, programs, systems and public health
department. The State Board of Health gives final
approval to conditions recommended by CIDAC.
A Unique Process Across States
In conclusion, the process of adding conditions
varies across states. Each state adopts a unique
process for expanding its NBS panel. The
examples discussed reflect the vital role advisory
committees play in facilitating this process.
Spring 2017 LAB MATTERS