Amy Harmon brings several patients' stories to this article, "Fear of insurance trouble leads many to shun or hide DNA tests."
In some cases, doctors say, patients who could make more informed health care decisions if they learned whether they had inherited an elevated risk of diseases like breast and colon cancer refuse to do so because of the potentially dire economic consequences.
Others enter a kind of genetic underground, spending hundreds or thousands of dollars of their own money for DNA tests that an insurer would otherwise cover, so as to avoid scrutiny. Those who do find out they are likely or certain to develop a particular genetic condition often beg doctors not to mention it in their records.
Some, like Ms. Grove, try to manage their own care without confiding in medical professionals. And even doctors who recommend DNA testing to their patients warn them that they could face genetic discrimination from employers or insurers.
According to the article, many people are choosing to pay out of pocket for genetic tests to avoid insurance or medical involvement. If this precedent becomes more common -- people paying for single-disorder tests -- then companies that offer genome-wide SNP typing may have an easy time growing their market.
This one I hadn't heard about:
When the Equal Employment Opportunities Commission sued the Burlington Northern Santa Fe Railway for secretly testing the blood of employees who had filed compensation claims for carpal-tunnel syndrome in an effort to discover a genetic cause for the symptoms, the case was settled out of court in 2002.
That is creepy.
It seems likely that the insurance risk fear will be addressed soon by legislation:
The Genetic Information Nondiscrimination Act, which passed the House of Representatives by a wide margin last year, would prohibit insurers from using genetic information to deny benefits or raise premiums for both group and individual policies. (It is already illegal to exclude individuals from a group plan because of their genetic profile.) The bill would also bar employers from collecting genetic information or using it to make decisions about hiring, firing or compensation. But it has yet to reach the Senate floor.
The article deals with both kinds of fears -- the fear of insurance consequences, and the fear of testing itself. It ends with a woman who feared being tested for the BRCA1 mutation so much that she chose surgery to remove her ovaries. Before a double mastectomy, she had the testing anyway -- and learned that she did not carry the risk allele after all.
UPDATE (2008-02-24): Hsien-Hsien Lei picks up the story also, and adds a perspective from Britain:
Two years ago, Cancerbackup found in a survey of regional genetics centers that waiting time for appointments to receive a BRCA genetic test can be as long as nine months with a further wait of 1 to 2 years for results. In some ways, this could be construed as discrimination in that other forms of testing are probably taken more seriously and performed more speedily.
She also provides a raft of links to other blogs that have posted on the Harmon story.