One of several ethical questions raised in the genetic engineering controversy is whether individuals should have unrestricted access to the results of their genetic tests. Because people sometimes make life-altering decisions based on the results of genetic tests, some argue that these tests constitute a form of genetic engineering. Many bioethicists believe that the information revealed by genetic tests could harm patients; others argue that people are entitled to make their own medical decisions.

In 1996 oncologists refused to tell Joy Simha, a breast cancer survivor, the outcome of a genetic test she had taken to determine if she carried the breast cancer gene, BRCA1. If the test was positive, she planned to have her remaining breast removed because chances were 50 to 85 percent that the breast cancer would recur. “They kept telling me, ‘We really feel that the results could be dangerous...