This year, we’re talking a lot about building. Our Justice, Equity, Diversity and Inclusion (J.E.D.I.) Action Planning Task Force and J.E.D.I. Committee have been building our profession to be an inclusive space for all genetic counselors and the patients they serve. Program directors are building and shaping the future of the profession by guiding the next set of genetic counselors to be involved in their own local communities, advocate for their patient communities and be leaders in the genetics and broader healthcare communities. Special interest group (SIG) leaders are building new spaces and improving current spaces for members of the profession to thrive and learn from their peers and form a sense of community within the larger NSGC community.

There are a number of volunteer groups and individuals who are working hard every day to ensure we continue advancing our profession. They’re focused not only on making the genetic counseling community a welcoming and inclusive place for all, but a profession that advocates for patients to receive equitable access to care.

This Genetic Counselor Awareness Day, we asked a number of genetic counselors who are active in building community within the profession to reflect on their journey and where they see the future of the profession and NSGC membership.

- Tyler Jasper, MA, LCPC, NSGC J.E.D.I Manager (she/her)

Finding Community through Lived Experiences

In September 2020, a group of genetic counselors met for the first time to discuss our shared experiences with disability. We spoke about our medical diagnoses and noticed how we all felt like we were “the only one.” We were disappointed in our graduate programs’ lack of support and acknowledgement that genetic counselors can have disabilities. Many of us felt isolated by the messaging of academia, that you are somehow “lazy” or “not dedicated” if you do not sacrifice your mental and physical health in order to advance your career.

That day we decided to create DisabilityGC. Our mission is to raise awareness and support genetic counselors, genetic counseling students, and prospective students who identify as having a disability and/or chronic illness. Our members include those with both physical and psychiatric diagnoses. Over the last two years our group has grown to include over 100 genetic counselors and graduate students. We have hosted multiple NSGC-sponsored talks, served on student thesis committees, and created a student mentorship program. We hope that through continued education and advocacy, we can make the medical field a more inclusive environment for genetic counselors and other clinicians with disabilities.

- Hannah Campbell, ScM, LCGC (she/her)

- Kelsie McVeety, MS, LCGC (she/they)

Members of DisabilityGC

Please email disabilitygc@gmail.com with questions or to become a member. You can also find us on Instagram and Twitter, @DisabilityGC.

Building a Profession that Reflects Patient Communities

There are many methods to shift the culture of our profession to be not only tolerant, but celebratory of the diversity our patients, colleagues, and students exemplify. Inclusion does not just mean having diversity sit at the table, or making space for more identities. It also means to be active in decision-making, from curriculum to equitable testing approaches to culturally competent patient care. It means active allyship and support from all colleagues to prioritize impact over intent.

I personally have been engaging in this work through self-education, reconciling with feelings of defensiveness, fragility, privilege, guilt, or shame that arise within myself through this work, amplifying and learning from the genetic counselors in our field already spearheading J.E.D.I., working with state and national level J.E.D.I. panels and community partnerships, facilitating discussion amongst my colleagues and classmates, and being conscious of my presence as a supervisor.

In my training, I was actively involved in the Genetic Counselors for Racial Justice group, a student-led group which was established in the summer of 2020 to help GC trainees work on three tiers of J.E.D.I. (intrapersonal, interpersonal, and organizational) within their graduate programs and rotations. The goal is to equip trainees with critical thinking needed to succeed in serving diverse patient populations during and beyond their training. We are organized into various committees focused on advocacy, research, education, resources, clinical encounters, and other areas of focus.

Understanding our profession’s eugenics history, evaluating terms we’ve used through education courses that need to be changed, having brave dialogue - these are required steps to positively provide equitable care to patients and in colleague relationships. We must unlearn counseling that is a barrier to patients and relearn counseling that is adaptive, demonstrative of cultural humility, and encourages lifelong learning for practicing genetic counselors.

Remember that genetic counselors serve our community. It is not up to our patients to adapt to our profession’s culture that is serving them. It is up to us to actively respect, do justice for, and champion our patients and the various identities they embody. We must commit to the urgency and necessity of J.E.D.I. within the genetic counseling profession to reflect the community we are serving.

- Smriti Singh, MMSc, CGC (she/her)
Educational Committee Member, 2020 – 2021
Genetic Counselors for Racial Justice

Connecting and Uniting Genetic Counselors throughout their Careers

Genetic counselors by nature are community builders. We place great emphasis on this in our professional community through our organizations, whether they are local, regional, or national. Within the NSGC, we have a history of building special interest groups (SIGs) to connect us as practitioners through a variety of professional development channels. SIGs are very much an integral part of the fabric of NSGC membership to many. They serve to connect and unite us in different ways, but they are far from perfect. For that reason, an intense scrutiny of every element of these internal communities has been initiated by the Board of Directors by way of the SIG Task Force. An incredibly dedicated group of genetic counselors were selected to take on the monumental task of figuring out different ways to improve our SIG model that also creates a community of inclusivity within NSGC to better serve everyone.

The work of the SIG Task Force is among the most important efforts I have ever been a part of executing, as it will shape how NSGC serves to foster community for genetic counselors for the future – with diversity, equity and inclusion as tenets in all of its threads. SIG communities have been woven into the entirety of my 19 years of NSGC membership, and I know I represent many who have a similar experience. Community is what has pushed ALL the paths forward for our profession, be it small or large networks. From those entering our organization through the Student/New Member SIG, traveling through different SIGs as their career trajectories change, and sunsetting in the Late Career SIG, SIGs should provide the feeling of being an anchor for anyone who desires a community of genetic counselor colleagues who share similar professional interests. As one of the most rapidly growing professions, it is even more important that we do this well to create a welcoming environment for an increasing number of genetic counselors entering the field, while maintaining relevance for the established members. It is imperative to foster community in every way possible, and we must be creative with structure and function that is nimble and can evolve with time.

- Sara Pirzadeh-Miller MS, CGC (she/her)

NSGC SIG Task Force Chair

Expanding Awareness of Genetic Counseling in Local Communities

Where I grew up, the systemic and cyclical nature of poverty was easily observable.  As a young student I did not feel overlooked, though when I attended university it became clear that the opportunities which accompanied my upbringing were starkly different than those of my peers.  During this time, I used to constantly wonder how my life may have been different had I not come from where I did. Would I get better grades? Have greater self-awareness? Fear the future less? Of course, I am now able to appreciate the past with knowledge of the present. Hence, it is the imagery from my upbringing which has instilled in me a passion for community organizing and local outreach.

One of my hopes for my career is that I may contribute to initiatives that are successful in building relationships with my local community. I truly believe that local initiatives focused on expanding knowledge of genetic counseling as a career option may increase access to the field for diverse populations and create systemic change within the genetic counseling community.

- Amanda Back, MS, LCGC (she/her)

NSGC Task Force member for J.E.D.I.; Pennsylvania Association of Genetic Counselors (PAGC) Co-Chair of Education

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