Should we test for conditions that are not treatable?
I'm always sobered to remember that Jack Kevorkian's first patient was a woman named Janet Adkins who, at the age of 55, had just tested positive for early onset Alzheimer's. The week that she went to Kevorkian for help in ending her life, she played tennis with her son, beat him, and probably couldn't remember the score too well, but appeared to be enjoying a fairly active and good quality life. And yet the information that she had this gene led her to her death. So, one has to be concerned about the effects of this kind of information, especially where no treatment is available for the condition for which the patient is tested.
Will discrimination become a problem with genetic testing?
And then, yet another issue has to do with the possibility of discrimination, genetic discrimination in both insurance and employment. My colleague Hank Greely at Stanford, who's thought about this a lot, writes:
"The consequences of the genetic revolution for individual health insurance are straightforward: people who are known to be at higher risk for genetic illnesses will be denied insurance or sold insurance that excludes the conditions most important to them. This problem is neither new nor unique to genetic diseases. Millions of Americans have long been unable to buy useful health insurance because of a medical history of, for example, diabetes, controlled high blood pressure, cancer, serious obesity, HIV infection, or any of a large number of other expensive ailments. The genetics revolution will not change the problem but it will expand the number of people effected." (bibl.3)