Technology creates greater access to genetic counseling
By Charis Eng, MD, PhD
Genetic counseling and testing can open a world of proactive care and treatment for every patient. But depending on where you live, there is limited or no access to these services. There is a scarcity of geneticists and genetic counselors in many parts of the country, but times are changing.
Through telemedicine - in this case, telegenetics - and involvement from your local doctor, you can use a computer and wireless network to consult with a genetic counselor. Also, even if you live near genetic counseling services, in some cases a shared medical appointment can offer unique advantages.
The Center for Personalized Genetic Healthcare (CPGH), the clinical arm of the GMI, is now offering telegenetic visits to our patients at the North Coast Cancer Center in Northwest Ohio. Patients are escorted to a private room where they connect via a Skype-like secure platform with Ryan Noss MS, LGC, one of our genetic counselors in Cleveland. This technology has allowed quick and easy access for patients to a genetic counselor without having to come to the main campus. CPGH plans to offer telegenetics services at more locations and will eventually offer telegenetics to patients who would like to use their home computer, phone or other device.
How does telegenetics work?
Think Skype video calls - only 100% private and secure.
Let’s say a patient in Las Vegas, Nevada at our Cleveland Clinic Lou Ruvo Center for Brain Health facility, is diagnosed with Parkinson’s or Alzheimer’s at a young age or has a family history, suggesting a possible genetic link. The neurologist likely will recommend the patient consider a genetics evaluation, which may lead to genetic testing.
However, there are very few genetic counselors in the whole state of Nevada. A genetic counselor in another facility, such as Cleveland Clinic, could set up a video conference, and consult the patient in Nevada.
The next step, if deemed appropriate after genetics evaluation, would be collecting a blood sample that can be sent to the appropriate clinical testing lab. Once results are ready, a genetic counselor can reach out to the patient through another video call reviewing the outcomes and suggesting a possible plan of action to the patient.
What can shared appointments offer?
Even if you live near genetic counseling services, there are still limited medical geneticists and genetic counselors. This is when a shared medical appointment can help with access.
This service often is considered in very specific situations, e.g, if there is already a known BRCA1/2 gene alteration (predisposing to breast and ovarian cancer) in the family and you want to know whether you also carry the family-specific gene alteration.
What we talk about in genetic counseling is quite similar when patients have the same diagnosis and the same genetic situation. A shared appointment gives everyone a chance to ask questions. Also everyone hears the answer. It serves as a mini support group as well, and in my experience, patients love it.
More typical is the individual personalized genetic counseling, which is conducted in private with each individual, and any test results also are shared privately.
The Center for Personalized Genetic Healthcare (CPGH) is now offering shared medical appointment at the Beachwood Family Health center in collaboration with Dr. Holly Pederson, Head of the High Risk Breast Center. These appointments are for patients with a family history of cancer. CPGH plans to offer additional shared medical appointments for patients with other conditions that would benefit from these types of appointments in the future.
Do you need a physician’s referral?
While it is not required, a physician referral ensures you have a physician to follow up with once results come back and the geneticist/genetic counselor gives gene-informed recommendations for personalizing your healthcare.
The genetic counselor will share results in a post-test genetic counseling session, and these are communicated with the referring physician.
At Cleveland Clinic, your doctor can use our electronic medical record system to refer you to genetics. If you are a patient elsewhere, your physician can refer you for counseling and access services.
Also, most insurers now require a genetic counseling visit before genetic testing can be ordered and reimbursed. This is a good thing because it helps avoid unnecessary genetic testing or incorrect genetic testing.
Does insurance cover genetics testing?
Your insurance policy and the reason for your visit will determine whether genetic services are covered.
The cost of testing varies, and genetic counselors work with patients, insurance companies and the laboratory to determine the cost of testing after the initial genetics evaluation and genetic counseling session.
New ways to access genetic counseling, and therefore appropriate genetic testing, are helping more people understand their risk for certain diseases and get the right treatments, which facilitates precision medicine.