Genetic counseling and testing open a world of proactive care and treatment. But depending on where you live, the scarcity of geneticists and genetic counselors with medical degrees in many parts of the country may make these services seem out of reach. Yet, times are changing.
Through telehealth — in this case, telegenetics — and with some involvement from your local doctor, you can use your computer and a wireless network to access genetics counseling. Also, even if you live near available genetics counseling services, in some cases a shared medical appointment can offer some unique advantages.
Think Skype video calls using the computer, only 100 percent private and secure.
Let’s say a patient in Nevada is diagnosed with Parkinson’s or Alzheimer’s disease 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.
But there is only one genetic counselor in the whole state of Nevada. A genetic counselor in another area, such as Cleveland, can set up a time for a telegenetics video call, then provide counseling for the patient in Nevada.
Blood work can be performed there. Then the sample can be sent to the appropriate lab. Once results are ready, a genetic counselor can reach back out to the patient through a video call. He or she can review outcomes and talk about a plan.
Even if you live near genetic counseling services, there are still a limited number of medical geneticists and genetics counselors in the whole country. 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 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 answers. 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.
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.
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.