We are pleased to highlight board member, Dr. Cobie Whitten, who brings her experience and passion as a patient advocate to the Genetic Support Foundation.
For more than 30 years, Cobie Whitten has worked tirelessly to support patients facing a cancer diagnosis and improve survivorship services for those patients and their families at all points on the cancer continuum.
She began her career by earning a doctorate in clinical psychology from the University of Illinois at Urbana-Champaign. Since then, her passion to lessen the burden of cancer on patients and their families is evident in everything she does, and her work has focused on the psycho-emotional side of cancer care, helping providers, patients, and their loved ones cope with the emotional and psychological experience of cancer. She is currently a Psycho-Oncology Consultant for the Providence Regional Cancer System.
Previously, Cobie worked for the Washington State Department of Health in the Washington Breast & Cervical Health Program, co-chaired the Survivorship, Palliative Care and End-of-Life Issues Taskforce of Washington CARES About Cancer, and taught courses at Saint Martin’s University on the psychology of the family and the psychology of death and dying.
In addition to her work for Providence Regional Cancer Center, Cobie also serves as a faculty member at Harmony Hill Retreat Center, a nonprofit retreat facility focused on wellness and offering comfort and support to thousands affected by cancer, including caregivers and health professionals, each year.
Her efforts include the creation of the community health education course Cancer 101: Basics and Beyond for the Providence Regional Cancer System which has provided patients and their families across the region the information, resources and support they need when facing a cancer diagnosis for more than a decade. She also provides training on a wide range of psycho-emotional topics to help providers better care for and support cancer patients, including spiritual support in cancer care, compassionate interactions with cancer patients, palliative care and wellness, coordinated and interdisciplinary cancer survivorship care, and compassion fatigue.
In addition to serving on the board for Harmony Hill and GSF, she also serves on the board for the Mayday Foundation, which provides financial support for those facing a cancer diagnosis.
She lives in Olympia with her husband Rich, a retired pathologist, and in her free time, she enjoys visiting her four children and two grandchildren, who are spread across the country and Europe. Growing up in Chicago, she’s also an avid sports fan and spent many days rooting for the Cubs with her father. She’s carried that love of sports throughout her life, and to this day, loves watching baseball, football, tennis and a host of other sports.
What makes GSF unique? How would you describe its mission?
For me, GSF’s mission centers on providing education and counseling services, not only to patients but also to providers. GSF provides comprehensive, knowledgeable counseling based on accurate, up-to-date science and informed by the psycho-social dimensions of health, to help empower informed patient decisions.
To be able to talk to someone in such depth and with such breadth of knowledge, to make decisions for you and your family based on such accurate and compassionate counseling with great follow-up care, is a real rarity for patients in our current healthcare system.
Genetic counseling requires this type of knowledgeable, unbiased, and thorough care. Testing for cancer risk, for example, can bring up a host of complex issues for patients. It may reveal that you have a genetic risk or a genetic variation and that may mean your children are at risk as well. Patients often grapple with intense feelings of guilt even though they have done nothing wrong. You need to be able to have conversations with patients that explore all of these dimensions of genetic testing, and that’s what GSF does with each and every patient.
I’m in awe of what GSF does. It’s such good, noble work and in such contrast to much of the counseling offered by the big testing companies. In general, testing companies are motivated by the bottom line and having as many people as possible take their tests to drive up profits. There’s not much room for the human side of genetic testing with that model.
What are some of the biggest challenges facing GSF?
It is so easy now to transfer your genetic information. All it takes is a swab of your cheek. And we’re bombarded with advertisements for direct-to-consumer testing on social media, when we’re watching television shows, and even at our doctors’ offices.
It’s strange because often people are distrusting, especially of big business industries, in our society. But when it comes to sending off your genetic information, there’s a hunger to know more about ourselves, a curiosity that prevents us from seeing the risks.
The current state of the genetic testing industry reminds me in many ways of the tobacco industry in decades past. There’s a tremendous amount of money generated in the industry for big laboratories and genetic testing companies. They’re driven by profits and answer to a board, just like any other public company.
And since many of these testing companies are offering free genetic counseling when you purchase their test, it’s much more difficult for patients to access the type of independent, knowledgeable, in-depth genetic counseling they need and that GSF offers.
This is a very real and growing problem in the industry and in our society at large that regulatory and legislative bodies need to step up and do much more.
Why do you support GSF? If someone asked you why they should donate to GSF, what would you say?
GSF is the only national nonprofit advocating for access to genetic counseling for all and for real regulation of the genetic testing industry. But it’s essentially a fight between David and Goliath right now. Now more than ever, genetic information has become a source of greed, a way for companies to line their pockets at the expense of patients. The focus is not on providing accurate, unbiased information, ensuring testing is appropriate, and making sure patients have the full knowledge of, and ability to consent to, what they are undergoing when they swab their cheek and send off that sample.
The reality is that information is not always helpful. Genetic information is only helpful if a person can take some action with the information or if it will meaningfully inform decision making about healthcare needs. Just living in fear about your health without the ability to do anything can be very damaging.
Unnecessary testing out of curiosity can open a Pandora’s box that people are ill-equipped to deal with. But a trained professional can help navigate this process, from deciding whether testing is appropriate for you and which test to undergo to providing the accurate and up-to-date information you need to make informed decisions about your health and the health of your family.
That is what a donation to GSF provides. That level of unmatched support to those who need it most. Support that frankly they may not be able to get anywhere else.