COVID-19 impact on genetic counseling for Huntington’s Disease via telehealth, by Wes Solem, ScM, Debra Roter, DrPH, Leila Jamal, ScM, PhD, CGC
Survey/Summary outcome; Johns Hopkins Bloomberg School of Public Health: During the COVID-19 pandemic, many genetic counselors (GCs) were obligated to provide telegenetic counseling by phone or video conferencing despite the normative convention of in-person practice. Little is known about GCs’ experiences of providing Huntington’s Disease telegenetic counseling (HD-TGC). The study methods consisted of surveys and interviews with HD GCs to assess the nature and extent of HD-TGC services offered during COVID-19 restrictions and to assess GCs’ attitudes toward the provision of these services as well as their perceptions of factors that favored or hindered its effectiveness.
A SURVEY OF GENETIC COUNSELOR OUTREACH ACTIVITIES, by Emily Green, M.S.
Master of Science Thesis; University of Arizona, Dept. of Cellular and Molecular Medicine: This study is the first to directly survey Genetic Counselors and Genetic Counseling students about their outreach activities and provides baseline data on GC outreach including frequency, type and audience, as well as information about barriers and motivations. The data presented can serve as a starting point for future research and development of new outreach projects.
A Pilot Study of a Student-Led Genetic Counseling Outreach Program for Underrepresented Minority High School Students, by Esther Choi, MS, Nancy Steinberg Warren, MS, CGC, Jill Fischer, MS, CGC
Study; New Jersey Center for Science Technology & Mathematics (NJCSTM), Kean University, Genetic Counseling Toolkit, LLC
The aim of this study was to design and implement a student-led outreach model for URM high school students specific to the Kean University Genetic Counseling Graduate Program. The results of this study may be used to inform existing or future outreach and mentorship programs specific to the field of genetic counseling.
Analysis of Factors Influencing Facebook User Engagement for New York Mid Atlantic Caribbean (NYMAC) Regional Genetics Network, by Allison Dignan, MPH
Essay; University of Pittsburgh, Graduate School of Public Health: The New York Mid Atlantic Caribbean Regional Genetics Network (NYMAC) utilizes a Facebook page to convey their mission and share resources with stakeholders. Data analysis of Facebook analytics was done to understand the factors that impact reach and engagement of NYMAC’s posts. The results of this study can be used as a guide for NYMAC and other public health entities to better utilize social media to promote health education and public health initiatives.
Status of Genetic Services in Puerto Rico: A Qualitative Analysis, by Coralys Marie Carcana Barbosa, MPH
Essay; University of Pittsburgh, Graduate School of Public Health
The New York Mid-Atlantic Caribbean (NYMAC) Regional Genetics Networks (RGN) aims to collaborate with key stakeholders to create access to quality care and appropriate genetic services. This needs assessment aims to describe the current status of genetic services in Puerto Rico to identify barriers and potential solutions. This needs assessment highlights health disparities that exist in the PR population and describes potential solutions.
Regional Challenges and Advances in Telegenetics During the COVID-19 Pandemic, by Madeline Reding, MS, MPH
Master of Science Thesis; University of Pittsburgh, Graduate School of Public Health
This study surveyed and interviewed NYMAC genetics providers to assess barriers and facilitators to the provision of telegenetics during the COVID-19 pandemic, the perceived value and demand for telegenetics services during this time, and any resources necessary to continue using telegenetics after the pandemic. Participants described policies and resources that would facilitate the future use of telegenetics, including changes to licensure and reimbursement policies, CMS recognition of genetic counselors, and funding. This study is significant to public health because it indicates areas in which NYMAC and other organizations may provide support to telegenetics programs moving forward.