Research is How We Build the Profession

Genetic counselors can and do wear many hats. Those hats have been expanding in number over the course of my career, but one area where GCs have always had interest is research. From graduate theses, to coordinating research studies, to independent grant-funded research - there are many flavors. Research is one of the ways we professionalize genetic counseling. A mature profession doesn't just provide services—it measures, evaluates, publishes, develops evidence, establishes standards, and changes practice based on what it learns.

Because research by genetic counselors and about genetic counseling is critical to the strategic advancement of our profession, it is an area of great interest to and investment by NSGC. This investment ranges from advocacy to grant funding to data collection and dissemination, as well as continuing education so genetic counselors not only learn how to be better researchers, but also have channels to share their research.

How does NSGC support research by and about genetic counselors? 

Build the Research Infrastructure

Research Special Interest Group - This SIG serves the needs of NSGC members performing research-related work and promotes the advancement of research in genetics and genetic counseling. Any NSGC member can join the Research SIG.

Research and Quality Outcomes Committee - The RQO Committee receives charges from the Board of Directors each year focused around demonstrating the value of genetic counseling and generating the data for evidence-based practice. The RQO Committee identifies, curates and develops resources for the NSGC community to assess the practice of genetic counseling and to conduct research that informs this practice. One of the biggest projects is to help determine the focus of the Research Initiative and review and score applicants for this grant (see below). The charges vary year to year, and anyone can apply to be a member of the committee through the upcoming Call for Volunteers.

Practice Guidance Committee - These volunteers work with author groups to assemble subject matter expert (SME)-led special author groups for practice resources, systematic evidence reviews,  and clinical practice guidelines.  These documents typically summarize the published research in a given area and the associated best practices for genetic counseling. This committee also develops clinical practice statements. Some of the most visible and downloaded articles in the Journal of Genetic Counseling are NSGC’s practice guidelines and practice resources. These projects vary year to year and anyone can apply to be a member of the committee through the upcoming Call for Volunteers. Additionally, there are calls throughout the year for volunteers via the General Discussion Forum or SIG Discussion Forums in NSGCommunities to serve on author groups on specific topics.

Professional Status Survey (PSS) - The PSS is a comprehensive data collection tool capturing a wide range of metrics from genetic counselors at all stages of our careers and in all types of employment settings. Executive summaries of the data are provided to both the public and NSGC members. Members have access to more detailed data from the PSS to support research on the profession of genetic counseling. See here for more details on data access from the PSS for independent research. The 2026 new and improved PSS results are coming soon! 

Specialty SIGs - NSGC now has 26 SIGs that cover a number of specialty areas of practice from immunology to nephrology to pediatrics and much, much more. Members of our SIGs are frequently sources of SMEs for both internal projects and for external organizations who may be assembling task forces, author groups, product research, etc.

Survey Support - Each month NSGC members receive an email with links to a number of ongoing research projects by students and genetic counselors. This infrastructure enables easier access to genetic counselors by researchers. This also enables genetic counselors to participate in research as subjects and contribute to the knowledge base of our profession.

Fund & Disseminate Research

Annual Research Initiative Grant - The Research Initiative is a $30,000 NSGC grant meant to foster research that advances the genetic counseling profession. The topic is approved by the Board of Directors each year based on input from the RQO Committee and our strategic plan. Look for announcements of upcoming requests for proposals in your inbox.  

Jane Engelberg Memorial Fellowship (JEMF) - Funded by a $1.5M permanent endowment with additional annual support and resources from NSGC, JEMF provides support for research by genetic counselors, promotes individual professional development, and drives innovation in the profession. The awardee receives $90,000 over two years along with mentoring and support from senior genetic counselor researchers

JEMF Student Research Award - These $500 awards are for current genetic counseling graduate students doing research that aligns with the research objectives of the JEMF. Six awards are available in a typical year.

Audrey Heimler Special Projects Award - This annual award of $10,000 is for work that focuses on the future of the genetic counseling profession and/or the provision of genetic services. Past projects have included resources for genetic counselors to use with patients, research to help advance the profession, and innovative continuing education resources for genetic counselors in current practice.

SIG Research Grants - These are typically small grants (<$2,500) for research supporting the needs and interests of SIG members. In 2026 $20,000 was budgeted to be able to support multiple grants. The applications are reviewed and scored by the RQO Committee.

Annual Conference - Coming up in November, the NSGC Annual Conference is a smorgasbord of research by genetic counselors and about genetic counseling. From deep-dives in pre-conference workshops, to educational breakout sessions, to presentations by grant awardees, and many wonderful representations of student research in posters and short talks, the Annual Conference is THE place to share research, consume research, and even learn how to be a better researcher! There is even a pre-conference symposium called “From Idea to Award - Empowering Genetic Counselors to Navigate the Grant Funding Landscape”!

Online Courses & Webinars - The new and improved NSGC Online Education Center is a great way to search out education opportunities and keep track of it all. There are online talks such as

• The Next Phase: The Evolving Role of Genetic Counselors in Clinical Trials and Research 
• Reflexivity Across the Research Lifespan: Planning, Conducting, Supervising, and Mobilizing 
• Ethical Genetic Counseling Research From Paradigms to Practice: Methodological Coherence in Qualitative Genetic Counseling Research

Journal of Genetic Counseling - JoGC is a primary outlet for peer-reviewed publication of original research by genetic counselors and the only journal that focuses exclusively on genetic counseling. There are special issues on particular topics. And the editorial team provides guidance and mentoring for researchers to most effectively plan and present their work.

Use Research to Advance the Profession

Advocacy - As part of our mandate as the professional organization for genetic counselors in the United States, we advocate for all genetic counselors, including those who are performing research. This support for research is reflected in our Policy Priorities, which support sustained federal funding for genomic research and training infrastructure and oppose cuts that undermine inclusion or innovation in genetic research. A recent example is a coalition letter opposing the recent Office of Management and Budget (OMB) Proposed Rule Revising Federal Grant Administration. This work is covered in detail in the monthly Advocate newsletter column from Faegre Drinker. I strongly encourage every NSGC member to take 3 minutes every month to read this important report.

Strategic Investment - There are times when research is needed to fill a gap and provide answers to questions that will help advance the profession, and a paid research project by outside experts is the best avenue. A couple of recent examples of commissioned research is collaborating with the research firm, Manatt, to evaluate the landscape for medicaid coverage for genetic counseling by genetic counselors.  This research has helped inform the work done by our Access Committee and our government affairs partners at Faegre Drinker. A publication summarizing the Manatt work is currently under peer-review. Another example I discussed during our Annual Business Meeting is an Office of Management and Budget (OMB) style evaluation of the economic impact of Medicare recognition of genetic counselors. This work was performed by the research firm, FTI,  and is being prepared for peer-review submission as well. The “what will it cost taxpayers?” evidence is essential to our continued federal advocacy work and ultimate success of the Access to Genetic Counselor Services Act. Both of these projects were significant financial and resource investments to further our strategic goals and contribute to the research base about genetic counselors. No single volunteer, no single program, no single health system has the special skills, insight, or credibility to perform this type of work, so NSGC being able to pay experts for highly credible work supports our profession.

Research is one way we build the profession we want. We generate evidence, we test what works, we learn from what doesn't, and we use what we learn to improve practice and advance the profession. NSGC provides much of the infrastructure and resources to make that possible—but it only works when members participate. If you care about genetic counseling research, whether you are conducting it, learning about it, participating in it, publishing it, or simply using it to improve your practice, there is a place for you in this ecosystem.

By this time, you probably know what I am going to say. If you care about genetic counseling and research by genetic counselors and about genetic counseling, active NSGC membership is essential to a robust research ecosystem that includes, and dare I say even occasionally centers, genetic counselors. Let’s go!!

 

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