It seemed like a good idea. Spit into a plastic vial, drop it in the mail and six weeks later get genetic information.
I would know if I'm predisposed to Alzheimer's or Parkinson's disease, breast cancer, diabetes and more -- hundreds of traits and conditions, according to 23andMe, the company supplying the test kit.
Genetic testing, the Holy Grail of medicine, is upon us.
"In five years, every newborn will leave the hospital with his or her complete genetic code," said futurist David Houle of Chicago.
Indeed, the race is on now to get all kinds of genetic information to consumers with at-home testing kits. Several companies have been selling the kits over the Internet, but it soon will be easier and cheaper. On Friday, Pathway Genomics of San Diego plans to start selling its at-home genetic testing kits at Walgreens, and undercutting the price of the competition -- $79 to $449, depending on the lab work, instead of $399 to $2,000.
The race is a testament to the power of the product. Unique to each person, genetic information can deliver targeted, personalized health care and a longer, healthier life if you know your particular genetic strengths and weaknesses.
It's the kind of information long promised to revolutionize medicine.
But there are a few catches.
To begin with, "it's really unclear how useful this stuff is," said Matt Bower, a genetic counselor, at the University of Minnesota Medical Center, Fairview, in Minneapolis.
The Washington-based Genetic Alliance, a consortium that includes patient groups, has called the home-based tests a waste of money and resources.
Knowing you're genetically susceptible to a disease doesn't prevent you from succumbing to it. And in many cases, there's nothing to be done.
"There is no pill or treatment that will prevent Parkinson's or slow it down," Bower said.
And genes aren't destiny. You might have the gene for a disease, but that doesn't mean you're going to get that disease. Likewise, if you don't have the gene, there's no guarantee you won't. In fact, most diseases are complicated interactions of tens, if not hundreds, of genetic and environmental factors, Bower said.
Who monitors the testing?
Because genetic information is powerful, potentially life-changing information, Bowers and others in the medical community worry about the impact direct-to-consumer testing would have on patients and how they would interpret -- or react to -- the results. The simplest genetic information can be difficult to understand, said Bower, who argues that genetic information needs a professional to give it context.
Hank Greely, director of Stanford University's Center for Law and the Biosciences, went so far as to call such testing "reckless" in a Washington Post report about Pathway Genomics' plan for retail sales.
Their concern is part of a larger debate on who will be the portal for genetic information. Until recently, medical providers manned the door. They were the ones who ordered the test, got the results from the lab, interpreted them and delivered the news to the patient.
Others, including those marketing do-it-yourself gene tests, maintain that people have a right to access their genetic information however they want.
23andMe uses the same labs as doctors, so its results are reliable, and samples, data and customer accounts are linked to a unique bar code, according to Rachel Nagler, a spokeswoman for the California-based company. Your personal results are, in fact, your results, she added. Users can get their genetic information, read the explanations provided by the testing company and then contact a doctor -- or not.
What about insurance issues?
My results from 23andMe arrived just in time for my yearly checkup.
"Very interesting," my family doctor said when I showed him. "But you don't want to put that in your medical record."
What?
"If you lost your job, had to change insurance or wanted to buy life insurance, you could be denied."
Not the answer I expected.
Insurance coverage, as my doctor alluded, is a concern. GINA (the Genetic Information Nondiscrimination Act of 2008) says no one can be denied health coverage based on genetic information. But if a person gives that information to a doctor and a health issue is found, it then qualifies as a preexisting condition. GINA doesn't cover that. (Preexisting conditions are covered under the recent health care reform, but not until 2014 for adults.)
Life insurance is trickier. The model basically turns on mutual ignorance: Neither the insurance company nor the client knows exactly how long the client will live. But genetic testing could give the client an advantage through information that the insurer doesn't have.
Going beyond health issues
But was there anything else to be gained from my $499 spit?
Lots of cousins. Because genes don't lie, I can find relatives as remote as fifth cousins, and they can find me. 23andMe helps us do that on its website. Genetic testing also has traced my roots back roughly 50,000 years.
Even in genealogy, however, easy-access genetics can be problematic. As they say, you can't pick your relatives.
Be it genes or relatives, you might not be ready to know.
Includes information from the Washington Post.
Karen Youso • 612-673-4407