Blazing The Trail: Why Genetic Counselors Must Lead The Genomics Revolution

Photo Credit: NSGC.org

Photo Credit: NSGC.org

To celebrate the first Genetic Counseling Awareness Day (November 9th), our CEO/President, Ellen Matloff, presented as the inaugural speaker for The National Society of Genetic Counselors (NSGC) webinar event. Here’s a recap of a few career challenges she shared and her call to action for fellow genetic counselors. You can watch the full webinar on NSGC’s website.

Matloff shared her personal genetic counseling career trajectory, highlighting her successes but more importantly her failures and challenges. A major hurdle was trailblazing the fight against gene patents. It began with a harsh journal rejection for Ellen, but ended with a unanimous Supreme Court case win as part of the  ACLU case.

Her patient advocacy efforts continue today. A main focus is the accurate interpretation of genetic results for all patients. Her clinical group noted that many patients were receiving genetic testing without the involvement of a certified genetic counselor, resulting in misinterpretation of their results.  This led to unnecessary surgeries and late-stage cancer diagnoses in multiple patients. Just a few weeks ago, an Oregon woman made national news sharing her misinterpreted genetic test results which lead to unnecessary surgeries. Matloff commented on the case and offered insight on how patients can prevent their own genetic test results from being misinterpreted.

Screen Shot 2017-05-27 at 3.12.34 PM.png

Unfortunate and preventable cases like these inspired her to address these issues by founding a new company, My Gene Counsel (mGC). mGC provides a scalable platform for patients and providers to receive digital genetic counseling, paired with their genetic test results. The evidence-based, fully referenced streams of information are easy to understand, for both patients and providers. Push notifications are sent when variants are reclassified, as clinical information updates, and when clinical trial opportunities become available.

Matloff’s experiences have provided her with insight on how genetic counselors must position themselves as leaders, in order for the profession to move forward:

  • Why Genetic Counselors Must Lead The Genomics Revolutions
    • Genetic counselors are critical to maximize potential of genetic testing and minimize harm
    • Genetic counselors have the unique skill set necessary to make this happen

 

  • What Can We Do Collectively To Drive The Field Forward?
    • Measure and assert our value
    • Expand our skill set outside of genetics
    • Become more business savvy
    • We need the NSGC, and companies and groups to offer CEUs in business, marketing, accounting, and administration as we sharpen our skills
      • This would be a fantastic master’s degree project or grant!
    • For those of you in a position to do so, offer free CEUs to genetic counselors on these topics.
    • Expand our skill set within genomics
    • Flex with changes to innovate and lead
    • Strategize ways to collaboratively pool our resources, experience, approaches, and materials
  • What Can We Do, Individually?
    • Internalize your own value
    • Stand up for yourself, stand up for all of us
    • Identify yourself as a ‘Genetic Counselors’, first
    • Attract the best students and a diverse range of students
    • Negotiate for higher salaries and better terms
    • Support other genetic counselors
    • Support companies that value genetic counselors
      • Follow them on Facebook, Twitter, and LinkedIn. Share, retweet, comment.
    • Support and work with patient advocates
      • They are perhaps our most valuable assets.  Follow them, share their content, invite them to our meetings, hire them as consultants.
    • Start and join online conversations
      • Include the genetic counseling chat hashtag, #gcchat, and #IAmAGeneticCounselor
      • Follow our Twitter List with 460 genetic counselors and genetic counseling institutions (email us to be added)
Photo Credit: donaldearlcollins.com

Photo Credit: donaldearlcollins.com

Robert Frost’s famous quote, “Two roads diverged in a wood, and I - I took the one less traveled by, and that has made all the difference” has resonated with Matloff and inspired her to add her own twist, “Sometimes neither of the existing paths work. It is then that you take out your machete and cut a third path.” We ask all genetic counselors to join us by grabbing your machetes to help us cut the third path together.