Top 10 Takeaways from the 2025 AEC!
On Friday, February 28th, 2025, the Texas Society of Genetic Counselors (TSGC) hosted the 2025 Annual Education Conference in San Antonio, TX at Morgan’s Wonderland! We gathered to share The Stories That Make Us, highlighting the field of genetic counseling and the families, patients, and clinicians that drive it forward. Conference Co-Chairs Morgan Nutter, Melyssa Garner, and Dina El Achi sought to organize a conference to center genetic counselors in the stories of those they serve and how these narratives can shape the genetic counseling practice. Conference attendees were encouraged to think about how storytelling impacts genetics, and how individual and collective narratives have the power to transform the future of genetic counseling.
The AEC continues to serve as an annual opportunity for the Texas genetic counseling community and industry to network and learn together. Tucked inside the gift bags distributed to attendees were adorable “Crochet Chromies,” which served as an additional fun point of connection. Attendees also received stickers supporting ongoing licensure efforts for Texas genetic counselors.
With an abundance of valuable educational and informative content, the Texas Transcript Team is excited to share our top 10 AEC takeaways:
1. The implementation of rapid genome sequencing changes medical management for up to 61% of babies in the NICU.
Olivia Trimmier, MS, CGC presented compelling data on the unique benefits of rapid genome sequencing and how we can work to make it more accessible for patients, highlighting its faster than expected turn-around times and beneficial downstream cost savings. NSGC has published evidence-based practice guidelines for individuals with unexplained epilepsy, recommending genome sequencing as a first-tier test (PMID: 36281494). Additionally, ACMG has recommended genome sequencing as a first-tier or second-tier test for patients with one or more congenital anomalies before the age 1 year or for patients with intellectual disability/developmental delay with onset before the age 18 years (PMID: 36507974).
Gordan V. Hartman and his daughter, Morgan, the inspiration behind Morgan’s Wonderland.
2. “The opportunity for inclusion is right in front of us if we just take the time to see it.” Mr. Gordan V. Hartman
Mr. Gordan V. Hartman gave a moving keynote address, talking about the story and mission behind Morgan’s Wonderland, the world’s first ultra-accessible theme park. Inspired by his daughter, Morgan, who has both physical and cognitive special needs, he sought to create opportunities and places where those with and without disabilities can come together for fun and a better understanding of one another. Guided by a mission of inclusion, the park strives to bring together guests of all ages and abilities through the power of inclusive play.
3. Genetic counselors are uniquely equipped with skills and resources to help their patients feel supported and valued in their prenatal genetic counseling journey.
Sarah Huguenard, MS, CGC, shared her unique perspective on working in prenatal genetics, helping to outline the role of the genetic counselor in the consent process and the counseling skills that help patients reach an informed decision. She shared helpful resources, including a tool to help evaluate a patient’s medical decision-making capacity.
Cover art for one of Jordan Burk’s books in the Kelly and Kelso series, featuring a main character with Down syndrome inspired by his uncle.
4. “Genetic counseling demands a degree of recognition for the idea that an individual’s life story has depths and origins and terminations that are hard to see but exceptionally rewarding to find – and that these stories dovetail with the life stories of the family and the clan and the larger breadth of humanity.” Dr. Scott McLean
Dr. Scott McLean spoke on his experiences as both a geneticist and author, describing the importance of storytelling and the ability for creative writing to illuminate the life journey of someone with a genetic condition. He discussed how crafting a genetic narrative may provide clarity, insight, validation, permanence, value, generosity, entertainment, celebration, and solace to patients.
While author Jordan Burk was unable to speak at the conference as previously scheduled, his work inspired discussions of books to help teach children about inclusion, diversity, and genetic conditions. His personal experience as a caregiver to his Uncle Kelly, who had Down syndrome, is the heartfelt inspiration for his books. Additionally, the UAB Repository of Children’s Books to Facilitate Genetic Condition Disclosure was shared as a helpful resource.
5. Numerous resources exist to help you counsel patients about incidental non-paternity.
Olivia Juarez, MMSc, CGC provided a thorough overview on the resources available to both genetic counselors and patients after a non-paternity event (NPE) discovery. Valuable resources for patients affected by an NPE discovery include the NPE Friends Fellowship and Watershed DNA.
6. In pregnant people undergoing NIPT that are found to have multiple aneuploidies and results that are discordant with fetal karyotype, the probability of occult maternal malignancy is 20-44%.
Marisa Jendras, MS, CGC and Heather Fisher, MS, CGC discussed their findings and experiences with occult maternal malignancy, reviewing current research and resources. They highlighted the IDENTIFY study through the NIH, which seeks to identify the reason for each participant’s abnormal or non-reportable NIPT results and to determine the best approach for evaluating pregnant people who receive NIPT results that suggest cancer.
7. You have the skills as a genetic counselor to establish a genetics presence in a new setting.
Panelists Rebecca O. Littlejohn, MS, CGC, Donnice Michel, MS, CGC, Dana Knutzen, MS, CGC, and Hannah Helber, MS, CGC offered insight into professional development and their experiences in counseling in “uncharted” territories. They discussed their experiences creating new genetic services, rebuilding and re-establishing genetics services, and establishing specialty clinics. They encouraged attendees to go where there is a need, partner with a champion of genetics, and demonstrate their worth.
8. Long Read Sequencing (LRS) is an exciting new technology that will influence future genetic test design.
Rachel Bluebond, MS, CGC and Caitlin Read, MS, CGC spoke on innovations in genetic testing, including how genetic tests are designed and curated for maximum clinical utility. They highlighted LRS as a new genetic testing technology that will impact future test design, highlighting its ability to detect structural variants, pseudogenes, repeat expansions, methylation status, copy neutral variants/large copy number variants, and variants in repeat-rich and high-GC content gene regions.
9. Natural photographs are as educational as traditional textbook photographs and are associated with more positive perceptions of individuals with genetic conditions.
Christina Falugi, MS, CGC shared research on the impact of photographs on student learning and perception of genetic conditions, finding that replacing traditional textbook images with equally effective natural images can reduce the likelihood of negative biases forming. She shared resources for natural photographs and videos, including the Faces Refining the Art of Medical Education (FRAME) Library.
10. TSGC and the Texas genetic counseling community thrive because of the dedication and invaluable contributions of volunteers.
TSGC would not be possible without the help and support of numerous volunteers, and remains grateful for their dedication, hard work, and generosity serving TSGC and beyond. Rachel Bluebond, MS, CGC and Grace Getchell, MS, CGC were honored as the TSGC 2024 Volunteers of the Year, nominated by their peers and selected as winners due to their passion and commitment to go above and beyond. They have served as an essential part of the Texas genetic counseling community and have made a lasting impact.
Left: A natural photograph of an individual with Marfan syndrome from the FRAME Library. Center: Some of the Crochet Chromies included in attendee gift bags. Right: TSGC 2025 AEC conference co-chairs; Dina El Achi (left), Melyssa Garner (center), and Morgan Nutter (right).