The ethics of genetic testing/screening

Leave it to the fine folks at MPR’s Midmorning to keep me from concentrating on my driving on the way into work today. How could I, what with the first-hour show they had on the ethics of genetic testing?

At face value, perhaps, it’s not a subject that seems predestined to suck me in, until I started thinking about a question Mary Lucia asks occasionally on the Current. If there were a test to reveal your chances for developing a fatal disease, would you take it? Well, would you?

Two callers struck me as particularly poignant. One said his wife, a medical student in Sioux Falls, had a family history of breast cancer but has been reluctant to have genetic testing because she didn’t want her insurance company to find out and deny health coverage in the future.

That’s unfortunate for a couple of reasons, according to Kerri Miller’s guest. For one, she had never found a case in which an insurance company had denied coverage on the basis of genetic testing and, two, there’s a law against that sort of thing now.

Another caller said she decided not to have the genetic testing done (she had a similar history in her family) because her insurance company would pay for it and because Medicare paid for her mother’s testing and it was negative. Two points there, too, according to the guest. One, what if a gene was inherited from the father? Two, insurance companies will usually relent on an initial refusal to pay for genetic testing.

These reassurances aside, there are a number of reasons why genetic testing is greeted with suspicion; most of these surround privacy issues.

In 2001, for example, the PBS Newshour profiled the case of 35 railroad workers for Burlington Northern Santa Fe Railroad, who were subjected to genetic testing by BNSF without being told.

Still, the bottom line for many people on the issue is: “What would I do….. if?”

In cases of breast cancer, many healthy women have opted to have their breasts removed.

  • Good morning. A question concerning the choice of the guest professionals on today’s show. Why wasn’t a genetics specialist, an M.D., on the show? The two genetics counselors did a fine job of telling the story, but neither have an M.D. degree, and I can tell you that the difference is significant.

    Perhaps the next genetics show might have at least one guest with an M.D. who specializes in genomic medicine to broaden the show’s impact. We are currently doing a series of webcasts on various diseases and their relationship to genomic medicine, and the panels are balanced to include physicians, counselors, other professionals and regular folks.

    Thank you for listening.


  • bsimon

    This issue is faced by people expecting new children every day. When my wife became pregnant with our daugher, she fell into the ‘high risk pregnancy’ category solely due to age. So you talk with a genetic counselor about what kinds of tests are available, what the odds are, etc. But the same question rears its ugly head: even if you know, what do you do?

  • Some people will test and some will not. However everyone should have information and access. Allow the individual to make personal choice(s) about what is “right” for them.