MISSOULA - It was the stuff of science fiction -- the mysteries hidden in our genes; genes that could determine if we’ll get cancer or dementia or go blind someday.
DNA tests that were thousands of dollars are now hundreds, and easy to get. But can you trust the result of a DNA test you buy on the internet to answer serious health questions?
Missoula high school junior Kiahna Thorsell, 16, got an Ancestry DNA kids for Christmas. She’s curious about her heritage and genealogy in hopes of discovering what branches are on her family tree.
“I think I was most interested in my genealogy and what I could find in my heritage and culture. Since I’m adopted, I don’t know a lot about what makes up me. So I want to figure that out and see where it leads me," Thorsell said.
She’s not alone in that quest. The genetic testing market is an $11 billion industry and growing -- and not just by the number of people eager to learn where they came from, but by the kinds of tests being offered.
But finding out if you’re more German than Scottish is one thing. Learning you could get a deadly disease is another.
The company Color screens for the BRCA gene mutation that puts a woman at a much higher chance of getting breast or ovarian cancer. Suddenly, a genetic test that once cost four thousand dollars is now about $100 -- and you don’t need an appointment.
“At this point, you can run 280 genes for a couple of hundred dollars and make a profit. The actual machinery is so slick and cheap and that’s what we’re seeing with BRCA now," said Montana Cancer Center Medical Director Dr. Michael Snyder.
A positive BRCA test can begin an avalanche of serious medical decisions including pre-emptive mastectomies or hysterectomies. But should something that life alerting hinge on a kit you bought online, rather than one arranged through your own doctor?
“I think it’s great that the test can be offered at a more affordable price. I think empowering people to understand that if they have a potentially hazardous gene and can be proactive in dealing with that, it’s wonderful," Dr. Snyder said.
"I just think you need to pair the test results with the appropriate counseling so that people can be guided through their response to any abnormal gene they may have," Dr. Snyder added.
A company called Myriad held the patent for the BRCA gene testing for years. Now that it’s expired, we’ll likely see more direct to consumer products emerge, focusing on all sorts of genetic abnormalities that could cause us health problems down the road.
Wile that seems like valuable information, it worries Missoula’s only certified genetic counselor, Marissa Russell.
“it does concern me for a number of reasons. So you get a positive test result from an online kit. What are you going to do with those results? Where is your care team? Who are you going to confide in? What are your options or guidelines? Where is your breast surgeon if you chose to have surgery? These are things that need to be discussed and discussed quickly," Russell told MTN News.
Russell feels consumers need to know how the test was conducted, how many genes were screened and what the results really mean to your long-term health.
“A negative result concerns me more. Just because it’s never a negative result, especially from a direct to consumer company because you don’t know the methodology being used," Russell said.
The US Food and Drug Administration is still trying to sort out regulations in the growing market. Dr. Snyder believes this is just the start of a new era in medicine where we can finally look into the chromosomal crystal ball for just a few bucks.
“I think this is a good segway to the broader discussion about doing these kinds of screenings, these genetic tests. We’re in a whole new era," he said.
This DNA test will simply give Kiahna her answers to her ancestry, but she too could someday take a test to reveal lifesaving information buried deep in our DNA.
Color Genetics offers counseling to go over the results of your test. So the bottom line take those results and discuss them with your own doctor.
Your own personal history is a big part of the cancer question. And since there are a dozen other genes that can cause breast cancer, the online test kits are just one part of a bigger picture about your health.