Please note that all times are listed in Central Standard Time (CST) and that the schedule is subject to change.

7:00 A.M. - 6:00 P.M.

Registration Open

7:45 A.M. - 8:30 A.M.

Sponsored Breakfast Symposia*

LabCorp: What’s new with 22q, from screening to diagnosis to patient care

Participants: Sophie Crowdes, MS, CGC and Kate Hanauer, MS, CGC

Session Summary: New screening guidelines, data on performance of cell-free DNA (cfDNA) screening, and clinical management recommendations have been published recently surrounding 22q11.2 deletion syndrome (22q11.2DS). Staying abreast of what is new with 22q11.2DS is important as clinicians consider implementing cfDNA screening for this microdeletion syndrome in their practice. This session will briefly review diagnostic testing strategies for 22q11.2DS before diving into an examination of the literature surrounding performance of cfDNA screening for the condition, with the heaviest focus on the newest available data. Additionally, as clinicians prepare to manage or appropriately refer patients that are confirmed to have 22q11.2DS, awareness of the most recent clinical management recommendations is paramount. The latest recommendations for managing individuals with 22q11.2DS will be summarized, using a real-world case example for illustration.

Sanofi: Wrestling with NBS uncertainty: Tools for discussion with families

Participants: Rachel Hickey and Jennifer Burton

Session Summary: Join us for a deep dive of the complexity surrounding the genetic counseling involved with positive newborn screening (NBS) results.  Two cases involving  lysosomal disorders (LSDs) will be used to highlight the psychosocial and clinical aspects while exploring tools that can be used to help families cope with some of the uncertainty. The learning objectives of this presentation are:

1. Characterize nuts and bolts of newborn screening (NBS)
2. Clinical interpretation of enzyme, molecular, and biomarker results in NBS for LSDs
3. Psychosocial counseling approach to uncertain and late-onset NBS result

8:45 A.M. - 9:15 A.M.

Opening Remarks

Participants: Deepti Babu, MS, CGC; Lisa Demers, MS, LGC

Session Summary: NSGC President, Deepti Babu, MS, CGC, and 42nd Annual Conference Program Planning Committee Chair, Lisa Demers, MS, LGC, kick off the event with a welcome message.

9:15 A.M. - 10:00 A.M.

Opening Plenary: The Era of the Final Rule: Ethical, Legal and Social Implications for Genetic Counseling Practice

Participants: Laynie Dratch, ScM CGC; Adrienne Kepner, J.D.; Debra JH Mathews, PhD, MA; Laura Duncan, MS CGC; Katherine Anderson, ScM CGC; Chenery Lowe, PhD, ScM CG

 

Session Summary: The newly implemented Final Rule of the 21st Century Cures Act (“Final Rule”) has the potential for significant impact on genetic counseling practice, given the requirement that results and notes in the electronic medical record be made available to patients nearly immediately. We aim to educate genetic counselors about the ramifications of this law, engage in an open discussion about the benefits and drawbacks, consider related ethical dilemmas, and empower genetic counselors to both adapt and advocate for necessary changes on the local and perhaps national level. The session will engage the audience in a variety of formats including didactic presentation, a moderated debate, and narrative sharing.

10:15 A.M. - 12:15 P.M.

Educational Breakout Session (EBS) : Differences in Sex Development: Care in Multifaceted Conditions Over the Lifespan

Participants: Jodie Johnson, MS, LGC; Kristen Fishler, CGC; Christina Miller, BS; Grace Kavanaugh, MS, CGC; Kathleen van Leeuwen, MD; Noi Liang MBA, BCPA

Session Summary: This session will deliver a well-rounded discussion of current advances and challenges in key areas of DSD care. We have intentionally chosen speakers to address multiple timepoints (e.g., childhood, adolescence, adult) and perspectives (e.g., patient, caregiver, surgeon, researcher). Too often, we work and think in silos. This is not only a disservice to our patients, but to ourselves as providers. A wider lens is particularly important in DSD care, which involves a range of multi-system conditions. This session will provide DSD-specific practice tools, but the concepts can also be applied by GCs working in other subfields where providers must work closely with each other and the family to deliver high quality, patient-centered care. Learn more here. 

10:15 A.M. - 12:15 P.M.

Workshops (Pre-Registration required)

Rolling the Dice on Pharmacogenetics: A Gamified Workshop

Participants:: Rachel Mills, MS, CGC; Carla McGruder, MS, CGC; Mylynda Massart, MD, PhD; Lucas A. Berenbrok, PharmD, MS, BCACP, TTS

Session Summary: Genetic counselors often coordinate clinical confirmation of research and direct-to-consumer genetic testing results. This role is expanding to include pharmacogenetic test results as DTC companies and research programs like All of Us report PGx results. This workshop will utilize a role-playing game similar to Dungeons & Dragons to work through PGx cases using a PGx report from a large, research study as a model. Attendees will build skills related to interpreting PGx tests, strategizing selection of clinical confirmation testing, and building PGx-specific counseling strategies. The goal of this interactive workshop is for GCs from a variety of sub-specialties to have the necessary tools to counsel PGx patients.

Counseling in the Moment: Broadening Genetic Counseling Skills Through Applied Improv

Participants: Elizabeth Fieg, MS, CGC; MaryAnn W. Campion, EdD, MS, CGC; Arianna Guillard, MGC, LCGC; Randa Lenker, MS, CGC; Remington Fenter, MS, CGC; Jessica Kreamer, MS, CGC; Rania Sheikh, MS, CGC; Callan Russell, MS, CGC; Weilong Li, MMS, CGC, PA-C; Claire Barton MS, CGC

Session Summary: Improv is a genre of unscripted theatrical performance that often involves scene-work based on suggestions from the audience. While improv is typically performed for comedic entertainment, the intention of improv is collaborative storytelling. 'Applied improv' is the adaptation of improvisational theater principles and training techniques to improve fundamental skills that can be applied in a variety of non-theater settings. This workshop will utilize applied improv principles and interactive exercises designed to improve communication, listening, teamwork, and focus. Through this workshop, genetic counselor attendees will develop skills necessary to effectively respond to the spontaneous elements of clinical and professional interactions.

Escape the PowerPoint: Immersive Experiences to Engage Gen Z Learners

Participants: Margaret Harr, LCGC; Shannon Terek, MS, CGC; Kallyn Stumm, MS, CGC; Rachael Brandt, MS, PhD, CGC; Robin Godshalk, MS, MHA; Zohra Ali-KhanCatts, MS, CGC; Sasha Bauer, MS; Heather Hain, PhD, MS, CGC; Samuel Levy, BS

Session Summary: This interactive workshop is designed as a fun and educational program to integrate in-person or virtual "escape rooms" into genetic counseling education. This session will review literature on the educational preferences of Gen Z learners, provide examples of how escape room activities can be used in education, training, and interview environments, and guide participants on the logistics of creating their own escape room activity.

Practicar para Platicar

Participants: Daisy Hernandez, MS, CGC; David Zarazúa, PhD; Charité Ricker, MS, CGC; Sharisse Jimenez, MA, MS, CGC; Susy Malca, MS, LCGC; Priscila Delgado Hodges, CGC; Valentina Caceres, MS, CGC

Session Summary: Almost 18% of the US population is Hispanic/Latine (H/L) and while 70% speak English proficiently, there is a significant proportion that is monolingual Spanish or Spanish preferring. H/Ls are underrepresented in genetics clinics and efforts to make genetics more accessible should include language concordant care (LCC). The 2020 PSS reports 14% of GCs speak languages other than English with Spanish as the most utilized non-English language in clinical (52%). LCC may not always be feasible, but can facilitate clearer, more meaningful communication. This workshop will bring together Spanish-speaking GCs to role-play with clinical scenarios and hone Spanish genetic counseling skills. We will build on the enthusiasm demonstrated by our workshop attendees at the 2022 Workshop entitled “Practicar Para Platicar.” This year’s workshop will provide attendees with more time in each role-play and also allow for inter-attendee discussions and feedback. Past workshop attendees are welcome.

Navigating Trauma and Secondary Trauma in Genetic Counseling

Participants: Jennifer Lee, MS, CGC; Sasha Kaufmann, MSW; Carlyne Ludington, MS, CGC; Daniella S. Menashe, MS, CGC; Amin Zarkesh, MS, CGC; Darius Haghighat, MS, CGC; Ambreen Khan, MS, CGC

Session Summary: A trauma-informed care expert will present the tenets of trauma, providing trauma-informed care and ways genetic counselors can reduce compassion fatigue and burnout related to secondary trauma. As 40% percent of genetic counselors (2022, PSS) indicated they are experiencing signs of burnout, it is critical that they develop effective coping strategies related to secondary trauma. Genetic counselors will have the opportunity to discuss their experiences counseling individuals and populations who have or may be more likely to experience trauma, to learn how to implement a trauma-informed care approach in their practice and to engage in a gentle mindfulness movement component aimed at reducing stress. Finally, resources will be provided to aid genetic counselors’ continued education in trauma-informed care and secondary trauma with the goal to increase well-being. Given that this workshop will cover trauma and traumatic experiences, participants should be aware that topics discussed could be triggering. A safe and confidential space is fundamental to this workshop and opportunities will be made for participants to take a break or to be provided additional support as needed.

12:15 P.M. - 6:30 P.M. 

Exhibit Hall Open (lunch options available for purchase)

12:30 P.M. - 1:45 P.M. 

Sponsored Lunch Symposia*

Variantyx- Whole Genome Testing: A Key Diagnostic Tool Throughout the Entire Lifespan

Participant:Dr. Christine Stanley, Chief Director of Clinical Genomics at Variantyx

Session Summary: An individual’s genome sequence is relatively static over their lifetime, yet our health needs and the world around us are not. Our collective knowledge of gene function and genetic risk factors for disease grows daily with newly published studies. At a personal level, new clinical symptoms and new clinical needs are likely to develop throughout the course of a lifetime. Intricately linked together, these factors create an opportunity to reevaluate genomes during different phases of life. This presentation will review genome test results from clinical cases applied at different stages of life including prenatal, neonatal, pediatric, juvenile, and adult and discuss the use of genome data for clinical management and improved personalized treatment recommendations.

Natera- Beyond common aneuploidies: new insights from SNP-based prenatal cell-free DNA screening

Participants: Sheetal Parmar MS, CGC, VP, Medical Affairs, Katelyn Hashimoto MS, CGC Senior Manager, Medical Science Liaison

Session Summary: Recently published studies on large patient cohorts including SMART, the largest prospective study of prenatal cell-free DNA (cfDNA) screening, reveal unique genetic findings with implications for patient management. This presentation will review new evidence describing: the first peer-reviewed clinical validation of cfDNA screening for sex chromosome trisomies (SCTs), which are the most common chromosome abnormalities in pregnancy incidence and detection of 22q11.2 deletion syndrome with SNP-based cfDNA screening in >18,000 pregnancies with confirmed clinical outcomes rare-yet-actionable clinical scenarios, such as suspected maternal malignancies, and how SNP-based cfDNA results can identify certain patients at risk for adverse pregnancy outcomes Real world case studies will describe how other clinicians have offered comprehensive counseling based on screening results, and built critical early intervention strategies.

2:00 P.M. - 3:30 P.M.

Educational Breakout Sessions (EBS)

How to Efficiently and Effectively Share Your Data: Publications and Beyond

Participants: Chloe Reuter, MS, LCGC; Miranda Hallquist, LGC ; Jessica Garsed, MLIS; Laura Amendola, MS, CGC; Cynthia James, PhD, ScM, CGC; Aaron Baldwin, MS, LCGC; Dr. Melanie Myers

Session Summary: This session will provide a practical overview of research dissemination and tools for attendees to use for moving their own projects towards a dissemination goal. We will cover the following topics using brief didactic talks and workshop discussions: assessing data readiness, selecting a dissemination method, successfully outlining and writing a manuscript, navigating the journal submission process, and dissemination mentorship. This position-agnostic approach will have cross-cutting relevance to genetic counselors in clinic, laboratory, or research roles. Attendees will leave the session with a clear conceptualization of each step of the pre-writing, writing, and dissemination process having directly engaged with the material throughout.

An Update on Targeted Therapies and Prevention for Hereditary Cancer Syndromes

Participants: Jason A. Willis, MD, PhD; Tobias Else, MD; Payal Khincha, MBBS, MSHS; Peter P. Stanich, MD Lindsey Kelley, MPH, MS, CGC; Michelle Jacobs, MS, CGC

Session Summary: Hereditary cancer syndromes represent an opportunity to use targeted therapies to reduce the incidence of cancer and to provide more effective cancer treatments. The number of clinical trials and treatments for those with hereditary cancer predisposition is increasing, but dissemination of this information is limited. This EBS will bring together experts who have worked on different targeted therapies for cancer prevention and/or treatment and will: 1) review the clinical trial process for new drugs in this setting, 2) present examples of specific targeted therapies for cancer prevention/treatment for a subset of hereditary cancer syndromes, and 3) describe the genetic counselor role in facilitating access to targeted therapies.

Genetic Counseling Beyond Family Trees: How to Work with Adopted Patients Impacted by Barriers to Health, Identity, and Choice

Participants: Heewon Lee, MS, CGC; Brianne Kirkpatrick, MS, LCGC; Krista Redlinger-Grosse, PhD, PLLC

Session Summary: As genetic testing has become more widespread, adopted adults have begun to use genetic testing, genealogical records, and social media to inform identity, shape familial connections, and affect health decisions. As adoptees make up over 2% of the U.S. population, genetic counselors often face questions from their families, friends, patients, and other healthcare providers about the uses and limitations of genetic testing for adoptees. This session will address how genetic testing intersects with adoption, the need for adoption competency, how adoptees and adoptive parents use genetic testing, the psychosocial impacts of testing, and the reproductive implications of adoption in a post-Roe landscape.

Residual Risk: Useful or Misleading? A Panel Discussion About Residual Risk in Carrier Screening

Participants:: Megan Judkins, CGC; Emily Becraft, MS, CGC; Megan Hinton, MS, CGC; Liana Abramson, MS, LCGC; Krista Borman Moyer, MGC, LCGC

Session Summary: Recent ACMG guidelines have advised that providing residual risk estimates is challenging due to limitations in collecting accurate data and have recommended not including that information on carrier screening reports (Gregg et al. 2021). The session will foster a dialogue that assesses the opportunities and challenges of residual risk reporting from multiple perspectives. The panelists in this session will discuss the nuances of residual risk reporting and provide genetic counselors insights on how to approach residual risk in their practice. Presenters would be two laboratory genetic counselors from different labs and two clinical genetic counselors with experience in counseling for carrier screening.

Moving Genetic Counseling Into Primary Care: The Future of Our Profession

Participants: Natasha Robin Berman, MA, MS, MPH, CGC; Jehannine C. Austin PhD FCAHS CGC; Mylynda Massart, MD, PhD; Christine Munro, MS, MPH, CGC; Prescilla Carrion MSc, CGC, CCGC; Megan Bell ScM, CGC; Vivian Pan MS, CGC; Sasha Bauer, MS

Session Summary: This session will examine the current state of genetics, specifically the barriers and challenges currently facing genetic counselors and equitable genomic care in general. The session will then focus on a reportedly novel genomic service pathway in a primary care setting, examining how the primary care setting may answer some of the many major concerns related to quality genomics care. It will review the different models of genetics within primary care settings and consider the different barriers to integration of genetic counselors within the space. We will also explore the potential benefits and encourage our society to consider reimagining where we practice.

4:00 P.M. - 5:00 P.M.

The Inspiring Chromosome 18 Story: Self-Advocate, Parent and Sibling Perspectives of Obstacles and Opportunities for those with Disabilities

Participants: Dena Goldberg, MS, CGC; Jannine D. Cody PhD; Ellie Goldberg; Susan Sheinkop, MD

Session Summary: When Jannine Cody's daughter was diagnosed with 18q-, the young military wife was frustrated with the lack of information, so she obtained a PhD and embarked on a research career founding the Chromosome 18 Registry & Research Society (C18). C18 is the largest database of patients with chromosome 18 anomalies. With proof of the immense benefits of growth hormone therapy and genotype-phenotype correlation studies, C18 is able to prepare families for what to expect and improve their care and overall quality of life. This session will review current recommendations, C18’s family-centered approach to research, sibling psychology, unique perspectives on disability and enrichment opportunities for people with intellectual disabilities.

5:00 P.M. - 5:30 P.M.

Natalie Weissberger Paul National Achievement Award Presentation

Participants: Check back soon for more information

Session Summary: The Natalie Weissberger Paul National Achievement Award is the most distinguished honor within the National Society of Genetic Counselors (NSGC). This award, bestowed annually, honors one outstanding member who has served NSGC with exemplary national achievements and volunteer activities on behalf of NSGC and the profession. Gather together to celebrate this year's award winner. 

5:30 P.M. - 7:00 P.M.

Exhibit Hall and Poster Reception

5:45 P.M. - 6:15 P.M.

Learning Lounge

6:20 P.M. - 6:50 P.M.

Learning Lounge

7:00 P.M. - 9:00 P.M.

Heart of Genetic Counseling Award Presentation Sponsored by Invitae*

Participants: Check back soon for more information

Session Summary: The Heart of Genetic Counseling Award celebrates the heart that genetic counselors bring to patient care, giving patients compassion and insight as they understand and respond to genetic conditions. The award pays tribute to distinguished genetic counselors who provide exceptional and irreplaceable care to families dealing with major health challenges.  Virtual Attendees, please be aware the session presentation will start around 7:45pm.

*Requires pre-registration