2024 National Society of Genetic Counselors presidential address: The path we take

Abstract

Good afternoon. I'm humbled and honored to be standing before you today as your NSGC President-Elect. As I thought about this address, I kept thinking about the path that brought me to this moment. My family loves to hike, and it turns out paths have been a recurring theme throughout my life. In high school, I had written a Ralph Waldo Emerson quote on a piece of paper and stuck it on the bulletin board in my bedroom. It reads “Do Not Go Where The Path May Lead, Go Instead Where There Is No Path And Leave A Trail” (Emerson, n.d.). Over time, everything else on the bulletin board was thrown out or packed away, yet the quote remained. After I received my genetic counseling degree I returned to graduate school to study molecular genetics. This was before exome sequencing was available and few people understood why I would want to take a path that combined the two careers. When I had to select a quote for my thesis, it was a no brainer what the quote would be. When I started thinking about what I would say today, I realized I had photographs of paths in both my office and my home. We've all taken different paths to get here today, and we are all still traveling our paths and will continue to do so throughout our careers. Though each path is unique, we share the fact that we are all genetic counselors.

As I think about the path our profession has taken, it is truly remarkable how far we have come in the relatively short time since the first graduate program began in 1969. In preparing for today, I have been reflecting on the 20 years since I graduated from Sarah Lawrence College and my first experience with NSGC at the annual education conference in Phoenix, Arizona. Like many others in this room, my path has been one with many twists, turns, and surprises along the way.

One of the unexpected turns on my path was becoming an advocate for growing our profession. This began in 2013 when the University of Iowa Health Care Vice President, Dr. Jean Robillard, asked me to start a genetic counseling graduate program. At the time, there were only five board-certified genetic counselors in the state of Iowa, and none specialized in either cancer or prenatal, so I did not think we would get accredited. He instructed me to write a business proposal on how to revamp genetic counseling in Iowa. I spent a year talking to as many people as I could, and ultimately, the proposal to set up University of Iowa Hospitals & Clinics (UIHC) Genetic Counseling was funded. Bolstered by the success of this effort, I set to work to build a great genetic counseling team locally. At this point, my path took another unexpected turn into public policy by advocating for licensure of genetic counselors in the state of Iowa. These efforts did lead to substantial growth, and now 24 of the 40 genetic counselors in Iowa work at the University of Iowa (and we are hiring!). A few years later, I embarked on yet another unexpected turn in my path. I received a call from one of my mentors, Joy Larsen-Haidle, asking me to become the Vice Chair of the NSGC Access and Service Delivery Committee. This opportunity turned into my love of our organization and volunteering with both NSGC and the American Society of Human Genetics, or ASHG. I loved being on conference calls with people from across the country and realizing we all faced similar challenges and could brainstorm on solutions. It was even better when I got to put faces to names at our annual conference, as these were pre-Zoom days.

Over the last year, I have spent a lot of time thinking about the future path of our profession. I love thinking about where we could be in 5 or 10 years and then figuring out how we can get there. Anyone who knows me knows I won't make it through this talk without sharing some data. So here we go, here are some projections for our future (Figure 1). Over the last 10 years (from 2013 to 2023), the number of ABGC certified genetic counselors has grown from 3426 to over 6700, and NSGC has grown from 2157 members to 4951 (Madeline Stanke, NSGC Operations Manager, personal communication, October 2023; Sydney Von Holten, ABGC Membership & Operations Senior Associate, personal communication, October 2023). These numbers make us one of the largest contingents of the clinical genomics workforce. In addition, over 440, or 10% of our members' volunteer within NSGC through committees, task forces, SIGs, and the Board of Directors. We greatly appreciate all of the volunteer efforts to move our profession forward. Based on a preliminary analysis of the Call for Volunteers applications, there seems to be a growing interest in volunteering with NSGC. I am so excited about these developments and am looking forward to being your President as we cross the threshold to over 5000 members.

When I learned I would be the NSGC President-Elect, I thought my primary goal would be passing the Access to Genetic Counselor Services Act. Living in a rural state with disparities in access, I now field phone calls from hospitals that want to hire genetic counselors but are challenged to figure out how they can pay for one without Medicare reimbursement. This has driven my passion for NSGC's Medicare recognition effort. However, while at the ASHG annual conference a year ago, ASHG President Brendan Lee and I discussed leading our respective organizations and he asked me how large NSGC was, and how large our conference was. After doing some quick calculations, I realized that if we stay on our current trajectory there will be over 10,000 ABGC certified genetic counselors by 2030 and NSGC members will follow shortly after. I will admit, I had a little bit of a panic attack. I then happened to run into then President Heather Zierhut and our Executive Director Meghan Carey in the hotel lobby. It was at that moment I realized as an active member of a larger organization perhaps what I could help with was NSGC's transition from our smaller organizational structure to a mid-size organizational structure, so we can continue to effectively support our rapidly growing membership.

Like Saturn, NSGC is growing into one of the largest genetics communities in the world. I am just going to throw this out to those of you in the audience who will be our future Board of Directors, maybe have a celebration when we reach 10,000 members! I can't lose my past hat as NSGC Treasurer so I am thinking about the budget planning for this celebration!

As luck would have it, 2024 is a strategic planning year. Although there will be several strategic plans before 2030, I would like us to think about how what we will be doing in the next 3 years will set us up for success in 2030. The ways we have done things in the past may have been good for an organization of our past size, or a planet with only seven rings, but as we grow and continue down our path, we may need to alter the ways things have been done to ensure our organization is sustainable. I believe that during a strategic planning year, it will be important for the Board to take a careful look at what we are doing, why we are doing it and how it serves you, our members. We will look at what is working well, what challenges we face, and also ask is this sustainable as our organization rapidly approaches the 10,000-member mark. As NSGC President Deepti Babu said in her recent Advocate article, “To me, that means getting really clear on why and how we do what we do (and don't do).” I will ask the Board to follow guiding principles that I have found helpful when leading through change. First, assume everyone is there because they are invested in the organization and moving our profession forward. Second, lead with kindness. These have been some of our guiding principles at UIHC Genetic Counseling, and they have helped us accomplish so much in a short time.

Importantly, the growth of the genetic counseling profession is not limited to the United States. The number of genetic counselors is growing worldwide. I want to welcome our colleagues from around the world who traveled to be with us this week. If you traveled from another country to join us, or you are a member of an international genetics or genetic counseling society, please stand and be recognized. I am so excited you are here. This summer I had the honor of speaking at the 47th Annual Meeting of the Japanese Society for Genetic Counselling. Did you know, there are 356 certified genetic counselors in Japan? In preparation for that talk, I reached out to Kelly Ormond, the President of the Transnational Alliance for Genetic Counseling (or TAGC) and the International SIG to get a sense of genetic counseling around the world. In 2018, it was estimated that there were approximately 7000 genetic counselors in 28 countries around the world, with 60% practicing in North America (Abacan et al., 2019). TAGC is currently collecting updated data, hoping to publish it in early 2024, and while the data are not all in yet, it is estimated we are on one side or the other of 10,000 genetic counselors worldwide.

Beginning to learn more about our international colleagues has been a fun extension of my work to grow our local genetic counselor workforce in Iowa. I was amazed to learn there are 47 genetics and genetic counseling organizations worldwide (Figure 2). In many countries, genetic counseling is just beginning, and they may not have things like a scope of practice or may have challenges getting their profession recognized and differentiated from medical geneticists. I believe that for our profession to grow to the next level, we must also grow internationally. We must be a recognized profession not only in North America but worldwide. Recently, fellow Board member Cindy James and I were discussing how awesome it would be if there was an international genetic counseling practice resource or even a practice guideline because, in spite of differences in our backgrounds and how we may practice, a recent study by Kelly Ormond et al. identified 20 activities that are common to genetic counselors practicing in Australia, Canada, the United States, UK, France, Japan, and India (Ormond et al., 2023). This is not surprising as we are all genetic counselors. My question to all of you is how can we, as individuals, support and elevate our genetic counselor colleagues around the globe? What should NSGC's role be in supporting our international colleagues? Does NSGC have an organizational duty as a global leader in the genetic counseling profession to help support genetic counselors around the world? While I want us to be sure to take care of our patients locally, I also challenge you to think about how we can help improve access worldwide as this will both help more patients and elevate the profession. Perhaps we can mentor a prospective student from another country. Perhaps we can learn about the commonalities and differences in genetic counseling practice around the world and become aware that any books and articles written with a United States-centric focus may not apply fully outside the United States. Perhaps we can share our paths and lessons learned as we have grown, such as establishing a scope of practice or licensure efforts, while understanding things will differ in other countries and we must approach these conversations with cultural humility. I am excited to see how we can work together to elevate our profession.

As our profession grows, our paths will diverge, and that's ok. I encourage you to get out of your comfort zone and make connections by doing new things and meeting new people. You never know what you might discover. For myself, I was never a political person, so when our Vice President of Health Care charged me to lead the Iowa genetic counselor licensure effort, I felt overwhelmed. Until our contract lobbyist, David Adelman, explained that speaking to legislators is similar to speaking with patients in that one must explain complex information in a way the legislator can understand in order to advocate for a group of people. At that point, I realized I did have the skills to advocate for genetic counselor licensure, the bill passed a few months later, and we even had fun doing it. Now I love advocating for genetic counselors for our federal effort. And for those of you who are the “only” genetic counselor and advocating and blazing a trail in your own specialty or geographic area—we see you, and we are here to support you. We applaud you for your efforts to expand genetic counseling across the entire United States, Puerto Rico, and around the world.

We can be a genetic counselor first and also be other things. I am a genetic counselor as well as an educator, researcher, and volunteer. It's ok to have multiple professional identities and belong to multiple professional organizations. And for those of you who are members of other organizations, I want to hear what works well there, especially in larger organizations so that we can consider what may work for NSGC as we grow.

As genetic counselors we all have our primary job responsibilities. Regardless of your profession, there will be good days and bad days. I think it's really important to have what I refer to as “your and” which is often an activity in research, education, or service. This allows on those bad days for you to take a break and focus on something else. It doesn't matter what your “and” is, just as long as you have one. As I've mentioned, I enjoy service and have volunteered with NSGC as well as ASHG. So my question for you today, is “what is your ‘and’”? If you do not yet have one, I encourage you to explore options until you find one that you enjoy.

One of my other “and's” is driven by my passion for recruiting perspective genetic counseling students to our profession coupled with the timeless principle of “Pay It Forward.” I was initially passionate about this cause in Iowa, but it's now expanded across the world. If we want to grow and diversify the genetic counselor workforce, we must invest time and energy into recruiting more students to our profession. Who in this room had someone help them learn about the profession? Who can you help so they can someday sit in this room? Although we put in the hard work to even be eligible to apply to graduate school, many of us are in our roles because someone invited or encouraged us, or leant a hand along the way. I encourage you to do the same. Just an hour of your time may make the difference in a lifetime to someone who may someday be sitting next to you at this conference. Ways to help prospective students can vary from talking to them about our profession, reading a personal statement, to conducting a mock graduate school interview. And although not all mentoring relationships work out, when they do they can evolve into lifelong friendships.

Mentorship is a passion of mine, and at the University of Iowa, we have developed multiple programs, including a mentorship program, to educate and engage undergraduate students about the genetic counseling profession, especially those who are underrepresented in our profession. To date, over 1000 students have participated in our programs, and you are just seeing a few of the students here in these photographs. I have learned so much from all the mentors and students who have participated in our programs. It is fun to watch things come full circle as individuals who went through these programs as students are now mentors.

Importantly, mentorship can help grow the profession of genetic counseling. In addition, it can help the mentor develop new skills and grow professionally. Let us actively seek opportunities to mentor and guide aspiring genetic counselors, providing them with the tools, support, and encouragement they need to thrive. If everyone in this room helps just one prospective student, imagine what our profession will look like in a few short years. By paying it forward, we will ensure that our field remains vibrant and continues to have a positive impact on countless lives.

My overall vision is for genetic counselors to be seen as highly respected professionals' instrumental in the implementation and delivery of genetic and genomic services throughout healthcare. To meet this vision, NSGC will need to continue to: (1) promote workforce expansion and integration throughout healthcare; (2) pursue state, federal, and payer policies; and (3) promote awareness about genetic counseling. I foresee NSGC continuing to work with our sister organizations to grow our workforce to improve access, while simultaneously empowering genetic counselors with tools to increase their efficiency and efficacy. I am passionate about empowering genetic counselors to work at the top of their scope of practice, and believe NSGC will have a role in keeping our members at the leading edge of genomic medicine during this time of rapid change in healthcare. To this end, it will be important for us to have a vision yet be nimble and responsive. These activities will improve consumer access in an era when demand is growing at an unprecedented rate. I am excited about NSGC's commitment to improving justice, equity, diversity, and inclusion within our society and healthcare, and envision this continuing to be a strategic area of focus for our organization. Finally, I see a role for NSGC to support the growth and awareness of genetic counseling research. Advancing genetic counseling as a fundable research area will lead to additional opportunities for career advancement. I also believe NSGC will be critical in supporting our profession by continuing to be an advocate and resource for our members. I am excited to spend the next year as your President thinking strategically to create a vision of where are we going, including identifying potential hurdles, developing a plan of work that can be implemented thoughtfully, and empowering the team with the tools necessary to begin to execute the next strategic plan. As President, I will work with the Board of Directors to help shape the vision to advance our profession and the role of NSGC to help us get there.

As President-Elect I have enjoyed working with Deepti Babu, Meghan Carey, and the Board of Directors to get up to speed on all of the great work happening within our organization. Prior to joining the NSGC Board of Directors, I did not have a good sense of how many staff support our organization and bring expertise and experience that we do not have. Thank you for everything you do to help NSGC run smoothly. I would also like to take this moment to thank all of the genetic counselors who took a chance and moved to Iowa when all we could offer was a vision of what was to come. Thank you for embracing the vision and your part in making it a reality. And I would not be standing here today if it wasn't for all of the mentors I have had throughout my career. Many of you are here today and know who you are, and I want to thank you for the guidance, support, listening, hugs, and opportunities you have provided. I am so grateful to all of you. And I am grateful to all of the people who continue to mentor me as I transition to this new role. I encourage everyone to reach back and thank your mentors, and then reach forward and be a mentor to a prospective student. And it doesn't have to end with students. We can also help our fellow genetic counselors who are in new roles, going through career changes, and through NSGConnect. I am asking all of us to pay it forward. If you are interested in mentoring and are not sure how to get connected to a prospective student, please reach out; I am happy to connect you to either a student or to a mentoring program which can connect you to a student. You can also indicate in your NSGC profile if student contact is welcome. Thank you for your commitment to our field, and may our collective efforts inspire generations to come.

I also want to thank my parents for their support. Just as Deepti's parents celebrated their 50th anniversary in 2023, my parents will be celebrating their 50th anniversary in 2024. I would also like to thank my husband, Kyle, and my daughter, Charlotte, for their support. Charlotte is growing up with NSGC. Her first trip at 8 weeks old was to my first in-person Board meeting in February 2020. However, as you can see in this photograph, Charlotte is not as passionate as her mom about federal advocacy and was not impressed with her first visit to the Hill. Luckily, she has discovered Washington DC has some great museums with exhibits about asteroids and dinosaurs and very much enjoyed her most recent trip to DC for mommy's summer Board meeting, where she waved to the Board when we were meeting with Members of Congress about the Access to Genetic Counselor Services Act.

I would like to close by saying that I am excited to work with the 2024 NSGC Board of Directors to think about how we will develop a strategic plan to help lead us down the path to 2030. Please know the Board will strive to make the best decisions for our growing organization based on the information available to them. And to you, my question is how do each of us as individuals contribute to the genetic counselor community? Hopefully, we all contribute in different ways. People come to NSGC for a variety of reasons, which is wonderful. As we grow and our paths diverge, we will have different interests and different ways of doing things. Our paths may be different, but we continue to travel and we are all genetic counselors. It is an honor to be the incoming 2024 NSGC President, and as your president, I look forward to representing the voice of genetic counselors. Thank you.

Colleen A. Campbell contributed to the conception of the article, wrote and revised the content, and provided final approval of the version to be published.

Colleen A. Campbell declares that she has no conflicts of interest with regard to the content of this publication.