NSGC Conference Session Spotlights: Data Sharing Techniques & the Future of Genetic Counseling in Primary Care

The National Society of Genetic Counselors’ (NSGC) 42nd Annual Conference is right around the corner, and it promises to be an exciting event showcasing the latest advancements in the genetic counseling profession. This gathering offers a unique platform for education, community-building, and fostering collaboration among ABGC Diplomates and genetics professionals alike. In this article, we provide an exclusive sneak peek into two educational sessions that offer invaluable insights into data-sharing strategies and the future of genetic counseling in primary care settings.

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

Presenters: Jessica Garsed, MLIS; Miranda L.G. Hallquist, MSc, CGC; Cindy James, ScM, PhD, CGC, Chloe Reuter, MS, LCGC

Are you in the middle of a research project but unsure how you’ll disseminate the results? Whether you’re a genetic counselor in a clinic, laboratory, or research role, this session is for you! The presenters will provide a practical overview of research dissemination as well as tools attendees can use as they move their projects toward a dissemination goal. Through brief didactic talks and workshop discussions, this session will cover topics including data readiness, selecting a dissemination method, writing a manuscript and more. Read on for a taste of the session’s subject matter.

What are some effective alternative methods for disseminating research data beyond traditional publication channels?

Jessica Garsed, MLIS: I would not discount the value of getting involved with more general audience vehicles (newspapers, popular science publications, podcasts, etc.). It’s important to get accurate information out there to the non-genetics/non-scientific population in a way that’s comprehensible.

Chloe Reuter, MS, LCGC: Genetic counselors can consider sharing their research or quality improvement data through internal institutional talks, patient brochures, online resources, pre-print publications and social media.

What practical tips can help genetic counselors get started and organized when writing research manuscripts?

Jessica Garsed: Being aware of and availing oneself of any library/information services available is important. There might be literature search services, instruction in database searching and/or document delivery of full texts that can make the discovery process smoother and more cost-effective. I also recommend using a citation manager to keep sources organized and to streamline the manuscript writing process.

Chloe Reuter: Leverage mentors, identify target journals, develop a formatted outline and find a writing buddy.

What are some important considerations during the journal submission process for genetic counselors?

Jessica Garsed: Do your due diligence to make sure that you are selecting a reputable publication, preferably one indexed in MEDLINE. Find and follow the journal submission guidelines.

Chloe Reuter: Consider pre-submission inquiries to journals. Understand the journal requirements for documents and formatting. Remember to thoughtfully craft a cover letter. Be prepared to suggest peer reviewers.

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

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

Moderator: Vivian Pan, MS, CGC

In this session, the current state of genetics will be examined, with a specific focus on the barriers and challenges that genetic counselors and equitable genomic care face. Attendees will explore a reportedly novel genomic service pathway in a primary care setting, analyzing how this approach addresses major concerns related to quality genomics care. Different models of genetics within primary care settings will be reviewed, along with the barriers to integrating genetic counselors in this space. The session aims to encourage the consideration of potential benefits and reimagine the possibilities of where genetic counseling can effectively be practiced. Read on for a preview of what you’ll learn at this session!

What are the key challenges faced by genetic counselors in providing equal access to genomic care for all individuals?

Presenters: Many patients do not access genomic care because they are not identified as needing it. This could be because limited clinician knowledge of and/or experience with genomic medicine can contribute to misconceptions and decreased comfort related to who and/or how to refer. Time constraints in regular clinics can pose an additional challenge. Patients may also be lacking in understanding how to request genomic services. If patients are identified, other barriers include the need to leave the medical home to travel to a specialty site, inability to take time off from work, insurance coverage and cost (or assumptions about potential cost) and a general lack of genomics clinicians. There is a breadth of literature that establishes that genetics is not being provided equitably to all, and it is our responsibility as genetics providers to help address this problem. We strongly believe that having genetic counselors within the primary care team can help address equitable access to genomic care.

How does integrating genetic services into primary care settings potentially improve the quality of genomics care?

Presenters: There is the opportunity for cross-education and the identification of patients that may otherwise not be flagged. Meeting the patient where they are may decrease barriers to access, such as finding transportation to a new place, and reduce anxiety by staying in the medical home. The added value of genetics in primary care is identifying more people who need genetic services and once identified, rooted in the continuum of care: the ability to have continuity over the lifespan and recurring engagement with patients and their families as our understanding of genetics and genomics and their own personal/family history change over time. We already recognize there is often more than one genetic concern per patient; this will become more common. To have a trusted advisor to integrate and relate different issues is very valuable.

What are some innovative approaches to incorporating genetic counselors within primary care, and what barriers do they face in this integration?

Presenters: There are many models for incorporation such as integrating a genetic counselor directly into the clinic, such as having genetic counselors as genomic preceptors for clinicians or referrals to genetic counselors as the genomic expert within a practice. One of the primary barriers is the current inability of genetic counselors to consistently bill services and the subsequent administrative support for their position.

Can you share some potential benefits of reimagining the practice of genetic counseling and exploring alternative settings for its delivery?

Presenters: We know that there are limitations, especially in getting the right people to genetics, and we consider that having genetic counselors be more primary care-focused may be one way to address many of these issues. Incorporating genetic counseling in primary care has led to a return to the roots of genetic counseling (prior to the advent of genetic testing) and the ability to use the entirety (and beyond) of our graduate education. It can provide an alternative route to specialization for genetic counselors, which is reasonable given our more generalized education. We consider that having primary care-focused genetic counselors may be one way to address many of the limitations experienced in the delivery of genetic counseling and genomic care. Our reimagining allows for a pivot from reactive genetic counseling to proactive genetic counseling, whereby we can seek out potential patients through the electronic health record and clinical decision support systems. 

How can primary care settings contribute to ensuring that equitable genomic care is accessible to a broader population, and what changes are needed to make this a reality?

Presenters: We believe that primary care is one of the best possible tools to improve equitable genomic care because primary care practices are located in all settings in this country. They are typically first-contact care and sometimes the only medical care available to people in their community. This includes serving all races and ethnicities, all sexes and genders, and people who are not economically advantaged or who are impacted by other social determinants of health. Strengthening genetics-primary care relationships, having genetic counselor support to overcome clinician knowledge and misconceptions regarding genomic care, incorporating genetic counselors into medical residency programs and having a consistent ability to bill for genetic counseling services are just a few approaches to improving equitable access.

These sessions — along with the many others showcased at this year’s conference — are sure to ignite discussions and inspire action, empowering genetic counselors to embrace innovation and shape the future of their field. Get ready to sharpen your focus and reflect on your passion at this year’s conference — and be sure to register if you haven’t yet!