In 1994, a Time/CNN poll asked people whether they would take a genetic test that could tell them what diseases they were likely to suffer later in life. Nearly as many people said they would prefer to remain ignorant (49 percent) as said they would like to know (50 percent).
The decision to undergo testing is a very personal one. It should also be voluntary. A person should agree to the test only if he or she desires the information. No one considering a gene test should be pressured into it by relatives, health care providers, or anyone else.
In addition, unless test results can lead to direct medical benefits, experts advise parents to avoid making this choice for their children. For most adult-onset conditions, knowing a child's genetic status will not affect the course of the disease or its treatment. The decision to have a gene test should be left to the individual, at a time when he or she is mature enough to weigh the options and handle the results.
Because the issues are so complex and so new, and the consequences so profound, the decision to have a genetic test deserves careful preparation and thought. One pivotal consideration concerns whether or not any action might be prompted by the test. If the test is positive, are there opportunities for prevention or early detection?
The decision is especially wrenching for persons confronted with a disease that can be neither prevented nor cured. In one such situation, Huntington's disease, many families initially expressed interest in being tested; however, when the test actually became available, just a tiny fraction chose to go ahead with it.
The story may be different for breast and colon cancer, where there are opportunities for prevention, early detection, and treatment. Indeed, early experience from a breast cancer gene research program indicated that most of the people who had donated samples for DNA testing chose to learn the results.