NEWBORN SCREENING
Responding Together: APHL and Newborn Screening
Members Respond to COVID-19
By Sari Edelman, MPH, senior specialist, NewSTEPs, Newborn Screening & Genetics
Newborns must get screened and
treated every day for certain conditions
to prevent lifelong disability or death,
despite the extraordinary circumstances
presented during the COVID-19 pandemic.
APHL continues to work collaboratively
with members to compile resources
and guidance regarding the newborn
screening (NBS) COVID-19 response,
permitting essential operations to
continue.
COVID-19 NBS response-related
challenges, practices and resources have
been compiled according to topic area
on the Newborn Screening Technical
assistance and Evaluation Program
(NewSTEPs) and APHL websites. Topic
areas include:
• Continuity of operations plans (COOP)
• Courier services
• Second or repeat screens
• Condition-specific responses
• Telehealth
• Biosafety of specimens
• Supply shortages
• Other (i.e., APHL resources and
webinars)
NewSTEPs encourages submission of
additional resources and educational
materials from the NBS community to
publish on these websites.
Resources and Educational
Materials
For information on challenges and
resources, the ColLABorate community
platforms provide updates in real-time,
as knowledge and response to COVID-19
changes every day. Weekly digests of new
information posted are also disseminated
in an effort to keep the NBS community
informed of up-to-date practices and
resources available.
APHL hosts ad hoc “hot topic” webinars
and other webinars pertinent to NBS
COVID-19 response. These webinars
bring together expert advisors and
leaders within NBS to address questions
from the community and highlight
member experiences, such as NBS
telehealth, and COVID-19 assay and
protocol development. All webinars
are archived on the NBS COVID-19
response website.
One recent webinar addressed the
screening of unsatisfactory specimens
as programs face challenges regarding
obtaining a second screen. Families
often do not want to return to hospitals
or birthing facilities to get specimens
collected, even though some state NBS
programs implement two screens for
all newborns. Some of these two screen
states have relaxed second screen
recommendations for the COVID-19
pandemic. Other programs have decided
to screen specimens normally deemed
unsatisfactory to accommodate for this
challenge. Newborn screening programs
screening unsatisfactory specimens
presented their experiences and answered
questions from the community.
Additional Technical Assistance
Programs are facing the difficult
challenge of maintaining current program
operations, potentially with a reduced
workforce and less resources. These
challenges may be further complicated
by the need to balance the primary goals
of NBS programs with the potential
uses of NBS resources and data for
COVID-19-related research and public
health response. The APHL Legal and
Legislative Issues in Newborn Screening
(LLINBS) Workgroup has begun offering
a technical assistance service to state
NBS programs to help evaluate and
discuss the potential legal and ethical
challenges faced during the COVID-19
pandemic. While the technical assistance
from the LLINBS Workgroup is not a
substitute for advice from a state’s legal
counsel, they can provide a sounding
board and starting place for evaluating
and discussing ethical and legal
challenges faced during COVID-19. •
DIGITAL EXTRA: If you are not
yet a member of the NBS ColLABorate
community, please contact Erin Darby,
senior specialist, Newborn Screening &
Genetics for access.
PublicHealthLabs
@APHL
APHL.org
Summer 2020 LAB MATTERS 27