I got my annual (high-risk due to family history and last exam) colonoscopy last week. My provider mentioned that I might consider genetic testing. At check-out, the staff member told me they would send a (actual) letter with a QR code so I could pursue genetic testing…if I wanted to. They didn’t make it sound urgent or terribly important. In fact, it sounded like it might be somewhat helpful, but expensive and not covered by my insurance.
A couple days ago, I got an envelope with a cover letter from the practice with the genetic testing materials. “Please use the QR code for Hereditary Cancer Quiz…and follow the steps on patient education with certified genetic counselor. Once completed, please call our office if you would like to proceed…to have your labs done.”
Frankly, the two pages of info that were enclosed look sketchy as hell. Myriad Genetics is based in Salt Lake City. It offers “…FREE and individualized Patient Education by patient educators who are Certified Genetic Counselors…”
Is this really an undercover arm of Ancestry.com or 23andme? Are the local police trying to match my DNA to a murder weapon? Am I going to be cloned? Is this something helpful, or is it Elon Musk’s latest effort to control my town?
So far, I get the idea that (1) this won’t affect my treatment regimen or the likelihood of detecting cancer any earlier, and (2) somebody somewhere would be making money off me in a way I don’t expect.
Might want to ask your doc if they’d change your care/testing based on whatever this genetic profile might show (do they want to rule out a hereditary syndrome?). If not, it sounds like an unnecessary expense/source of worry.
I got the distinct impression from my provider that he was just asking if I might want to explore genetic testing. This was in response to me informing him that I do have a family history of GI cancer. He did not explain the benefits or promote it. He did not explain that my testing regimen might be affected. It was sort of like, “Do you want to know if it’s a boy or a girl?”
There are many known oncogenes and tumor suppressor genes. One of the earliest test kits was Oncotype Dx for breast cancer recurrence. If you’ve heard of BRCA1, it’s onboard Oncotype Dx.
There is a professional society of genetic counselors who abide by best standards and practices for sensitive topics like genetic testing. It would be interesting to know whether the SLC company employs any.
Consider it if you have a cancer diagnosis, or your oncologist may order a test.
Consider it if you have a familial history of cancer, like a more than usual number of family members who died of pancreatic cancers, going back a few generations.
Consider it if another family member got tested and they had a marker for an oncogene.
Otherwise, save your money. Even if this company is legit, they won’t tell you if you will invariably get cancer. They will calculate a risk ratio, like “you have a 6% chance more than the average American of getting pancreatic cancer”, which isn’t particularly actionable.
There are many legit clinical trials for genetic testing done by universities and cancer centers. You may want to take a look at clinicaltrials.gov to see if you can participate in a GI diagnostic trial. At least you’ll know that it’s ethical.