One of the big draws for
me, as an applicant to Pitt’s Genetic Counseling Program, was the possibility
of a student work position. My job at Pitt not only helps me pay my rent, it
also has given me valuable experience working in the field of public health
genetics.
I am a student worker for
the New York-Mid Atlantic Regional Genetics Network (NYMAC), which is the
regional genetics network that Pennsylvania belongs to, along with New York,
New Jersey, Delaware, Virginia, West Virginia, Maryland, and Washington, D.C. The
regional genetics networks are responsible for coordinating regional public
health efforts relating to genetics, such as access to services, increasing
telegenetics and programs related to newborn screening.
One of NYMAC’s goals has
been to improve the availability of genetics resources to everyone within the
region, with a particular focus on improving access for people who live in
underserved areas. As part of that effort, NYMAC launched a Genetic Services
Referral Phone Line. This is where my job comes in: when someone calls the
phone line, I answer it. I help callers find a genetics clinic near them, a
telegenetics service they can contact, or another resource to help answer their
questions.
The trouble is, very few
people call this phone line. This is public health in practice – sometimes an
intervention doesn’t work the way it was intended, and needs to be
re-evaluated. Alyson Evans, a second year genetic counseling student working
for NYMAC, is focusing her thesis research project to explore the reasons the
phone line might not have been utilized as hoped, as well as other tools that
might be more useful for connecting people to genetics services.
In the meantime, we focus
our efforts on developing other tools that might help reach the same goals.
Alyson and I have written Red Flags fact sheets, answering doctors’ questions
about things like when they might consider referring a patient to genetics
services.
We have also been working
with the American College of Medical Genetics and Genomics (ACMG) to update
their Find a Genetics Clinic tool. This involves going through the internal
directory of genetics providers within the NYMAC region, and making sure that
they are all appropriately updated on the ACMG website. This tool allows people
to search for genetics clinics by location and specialty type, to help connect
them to appropriate services.
As we
approach the beginning of the new grant cycle, we will be developing new ways
to adjust our efforts. This spring, I will be attending the Innovations in
Genetic Service Delivery Learning Forum in Washington, D.C. This forum was
organized by the NYMAC team, gathering stakeholders from throughout the region
to discuss how different delivery strategies might help improve access to
genetics services.
Madeline Reding, class of 2021 |
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.