Making an Impact: My Passion for Genetic Counseling and Personal Mission to Increase Access for All
When I began thinking about my career nearly 20 years ago, I had never heard of genetic counseling. Now, I try to be a champion for the profession as I can see the positive effects it has on a daily basis on patients across the country. Below, I highlight my discovery, and subsequent love, of the profession of genetic counseling and how impactful that work can be.
While I always thought genetics was a fascinating topic in school, when it became personal, it was a different story. As a teenager, I was devastated when my “Fun Aunt” Meme was diagnosed with breast cancer in her thirties and passed away only six years later.
Moved by the untimely death of someone I loved so much, I dedicated myself to trying to combat what caused her illness. In that vein, as I started the formative years of my undergraduate degree at Duke University, I planned to major in chemistry to pursue a career in research to find a cure for cancer. Around this same time, researchers discovered that individuals who carry a particular variant, or change, in the BRCA1 or BRCA2 genes have an increased chance to develop breast and/or ovarian cancer in their lifetime. Our grandfather shared with us that, in fact, he was told that my aunt “had the breast cancer gene”. At the impressionable young age of 19 or 20, this terrified me. What if I too inherited this gene variant and died young of breast cancer? Would I leave behind young children without a mother and a husband without a wife? (I was quite the dreamer at that age!)
As I got deeper into the higher level chemistry courses at Duke, I found my passion for pursuing a career in research waning. I wanted to do something that would involve working more directly with people to see the immediate impact I could have on their lives. I considered a career as a physician but decided it wasn’t a great fit for me. Genetic counseling came up as another option that would allow me to work in the medical field and interact directly with other people. Given my experience in my family, I already felt I had a personal connection with the field.
To learn more about the profession, I found a genetic counselor working in cancer genetics to shadow for a few hours a week. She was conducting a research study around patients’ experiences with genetic testing for variants in the BRCA1 and BRCA2 genes. I was given the task of filing these records from her patient consultations. Deeply interested, I would take a few minutes to read through her notes from those sessions and learned a lot about what she did and the value she brought to patients. It was during these volunteer hours that I understood enough to ask the right questions of my family about my aunt’s diagnosis. I broached the topic with my mother and grandfather and we discovered that my aunt had the “HER2neu” gene, which is an overexpression of a gene during the development of her breast cancer. It can not be inherited and is instead used to guide treatment and management decisions of the cancer itself. Sadly, she had never been tested for variants in BRCA1 or BRCA2.
Learning this information was both a relief and a call to action. I wanted to help other people with family histories of potential genetic conditions understand what those histories meant for their health. I wanted to help them fully understand the options to both learn more about their risk for those conditions and for managing and adapting to that information.
Now with a clear career path, I pursued my Master's Degree in Genetic Counseling at Mount Sinai School of Medicine and then moved back to my college hometown of Durham, NC. Fortuitously, the genetic counselor I had shadowed was leaving her position in a few months and I was able to take over her role. I ended up working for 10 years in the Hereditary Cancer Clinic at Duke Hospital helping those with cancer or with a family history of cancer. Through the clinic, I worked to ensure all that patients that I saw understood and adapted to the psychological and medical implications of having cancer themselves or being at increased risk to develop cancer due to either their family history of cancer or a known genetic variant.
Then, my career took another amazing turn. After taking a few years off to manage my own growing household, I discovered PWNHealth (PWN). I will be forever grateful to the connections that led me to a position with this company. PWN’s mission is to enable access to safe and easy diagnostic testing through clinical oversight of consumer-initiated tests by a nationwide network of board-certified physicians and genetic counselors. By allowing consumers to have easy online access to genetic tests — it is as easy as making a purchase on Amazon.com — they can improve their chances of detecting and preventing disease. A critical component of the “safe” access to testing is the genetic counseling support offered throughout the process. Through a rigorous clinical review of all consumer-facing materials prior to test launch and access to a network of clinical, licensed genetic counselors through asynchronous messaging or scheduled telehealth consults, PWN seeks to mirror the same standard of informed decision making and understanding and adaptation to results that would be expected when offering genetic counseling in a clinic.
To date, we have provided expanded access to consumer-initiated genetic testing and counseling support for an astounding 400,000 individuals. This is almost 200 times the number of patients I could impact while working in a clinic.
PWN’s approach allows access to testing from the comfort of home with online ordering, remote clinical oversight, and telehealth consults. With safety and quality at the core of our business, we’re providing an experience that models the traditional in-clinic model of genetic testing. We partner to offer testing for a wide variety of medically actionable genetic traits that are critical for people to know. Some examples are: allowing couples to screen for genetic conditions that could have an impact on their future children; allowing parents to screen their young children for hundreds of rare genetic conditions for which early diagnosis can make a significant improvement in quality of life; helping individuals understand how their genetics may impact their response to medication; and helping the healthy adult population learn more about their risk for more common inherited diseases to aid in early diagnosis and prevention. Offering support from a genetic counselor throughout the process allows these individuals to better understand their results and empowers them to incorporate this new information into improving and taking control of their health.
My life’s work has evolved into a personal mission to champion the movement of expanded access to genetic health for all people, everywhere — beyond the individual, local clinic. Individuals have the right to their own health information but barriers of the traditional model have always prevented accessibility — insurance, cost, location, and more. By offering genetic counseling support along the way, I aim to promote the appropriate understanding of, adaptation to and engagement with their genetic test results to allow all individuals the option for personalized and preventative medical care.
Authored by Robin H. King, MS, CGC, Director, Genetic Operations and Programs at PWNHealth
For more information about PWNHealth visit pwnhealth.com