Would you ever consider ordering something online that you don't know the cost of? Apparently the laboratory that controls the market for BRCA (breast cancer) genetic testing expects potential customers to do just that.
If you go to Myriad's website and click on the button for ordering a genetic test for BRCA1 or BRCA2, or both, you'll fill out a form asking for information on one or more of the tests available. No cost is indicated; the site doesn't even say, "information is free; you won't be charged until you request an actual test". If you go to the page on reimbursement, you'll find a statement that the average person who uses insurance coverage can expect to pay $300.
Ummm, according to the articles I've read on cost, there may be a zero missing from that number--particularly if you have no insurance or choose not to use it. Tests can be as low as $300, but could also be as high as $3000. The formal "test request form" you send in with your blood sample asks for credit card and/or insurance information, but again, no numbers are given. The information page on reimbursement adds the following warning:
Canceling the Test
If you cancel a test within 48 hours of the blood draw, you will not be charged. However, after 48 hours, you are responsible for payment, even if you decide not to receive test results.
Sounds to me as though you really need to have your ducks in order before you "decide to have a test". Of course, you can use the 800-number; perhaps you'll reach a person who knows and will tell you how much the test costs.
Marie Godfrey, PhD
Gene tests a waste of money
The following information comes from Ian Sample, a science correspondent for The Guardian, a British newspaper. To read the full article, go to http://www.guardian.co.uk/science/story/0,,1697962,00.html
The Natiional Health Service has a number of single-gene tests available. These tests, look for mutations know to be associated with specific diseases such as cystic fibrosis. The new tests--described by Sample--claim to measure a person's susceptibility to diseases such as cancer and Alzheimers. Sample quotes Zimmern and Khoury, who participated in recent meetings discussing genetic testing:
"Even if there's theoretical evidence the genes are linked to a disease, that's often far too little to go on. There's not one shred of evidence that these tests benefit human health," said Ron Zimmern, director of the public health genetics unit at Cambridge University. Muin Khoury, director of genomics and disease prevention at the prestigious Centres for Disease Control and Prevention in Atlanta, told the meeting: "There are more than 1,000 genetic tests on the market now, with many available over the internet, but suffice it to say we have no idea whether they are of any value." In many cases, a person's family history was a better indicator of future disease, he said.
Genewatch, a lobby group that watches over announcements related to genetics, is preparing a report on 11 genetic tests that claim to help a person tailor diet to genetic test results. And scientists in the Iceland group recently announced plans to develop a test for a gene reportedly linked to type II diabetes. In response, Sample quotes his two sources:
Even if such a test is made available, the advice to those testing positive will be the same as that given to all - eat sensibly and take more exercise, said Dr Khoury. "If that's the case, why buy a test?"
"What line should society take?" asked Dr Zimmern. "Should it say that if it doesn't harm you, you can allow the snakeoil salesmen? Or does society have an obligation to make sure the consumer is only buying tests that work? I think industry has to get together with government to set up studies to test whether these tests make any difference to people's health."
Members of a Capstone class at Portland State University assisted by geneforum are reviewing websites as part of their efforts to produce a "Consumer's Guide to Genetic Testing". If you have a site you'd like them to investigate or a question you'd like to ask, let me know.
Marie Godfrey, PhD