Have you had genetic testing? Has someone you love? These days, the answer is probably yes. Maybe it was for cancer, maybe for an unknown condition, maybe during pregnancy.
But what happened after those tests? Did you talk with someone? Did a genetic counselor help you understand what the results meant and how they could be used to improve your healthcare now and in the future?
If the answer is no, you’re not alone.
Since genetic testing really began to explode a decade ago, this has been a perpetual problem.
“There haven’t been enough genetic counselors to serve all the people who need testing,” explained Ellen Matloff ’91, founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine. “Even for patients lucky enough to meet a certified genetic counselor, they most often never see them again – meaning there is no way to pass down frequent and important advances in the field to those patients and their clinicians.
“As a result, patients across the country have had their test results misinterpreted, leading to poor clinical outcomes.”
Matloff, though, is on a mission to change this through her company, My Gene Counsel. And she’s got help from an old friend and fellow Union grad, Jay Freeland ’91.
My Gene Counsel
Matloff has always been an outspoken patient advocate, especially when it comes to genetics. She was even a plaintiff in a 2013 Supreme Court case that led to drastically lower prices for genetic testing and made it possible for many more patients to afford this technology.
She left Yale in 2014 after 18 years there and launched My Gene Counsel (mGC), a digital health company specializing in scaled genetic counseling and testing.
“We’ve created digital tools that use technology to help our partners – like health centers, pharma, research foundations and EMRs -- multiply their genetic counselors and keep patients and clinicians up to date with notifications as the field changes,” explained Matloff, who holds a master’s in genetic counseling from Northwestern.
Consider the Living Lab Report.
This digital platform creates a long-lasting connection between clinicians and their patients by providing constantly updated information. Whenever new details are discovered related to a disease or condition, or precision medicines are developed or guidelines evolve, this information is shared with the clinician and patient.
As a result, these ever-evolving lab reports help fill the void when there are too few genetic counselors, Matloff said. This tool enables clinicians to better understand test results; properly contextualize them for their patients based on the most current scientific knowledge; and provide timely advice about how to use results for healthcare decisions.
It’s this sort of innovative approach to helping people that drew Freeland to My Gene Counsel.
The former president, CEO and director of FARO Technologies, Freeland is a senior advisor to mGC, utilizing his connections and experience with partnerships, scaling and investor relations to help guide strategic initiatives.
“When I retired, my wife and I decided that one of the things I would spend my time on is investing in companies that we both felt were meaningfully improving the lives of others,” he said. “My Gene Counsel is doing this.”
“I want to see mGC’s tools being utilized across the medical system to ensure everyone has timely and accurate access to the latest recommendations for testing or treatment in the continually evolving genetics space,” Freeland continued. “Timeliness and accuracy of information for decision-making is irreplaceable.”
And he knows this first-hand. Which makes his wish to see mGC thrive a personal one.
“As a six-year cancer survivor and the father of a child with Down syndrome, the world of genetics has been front and center in my life for the last 11 years,” Freeland said. “These experiences have made it easy for me to connect with My Gene Counsel’s mission.”