Under what conditions is testing to be done?
I think there's wide agreement, especially on the basis of our experience with Huntington Disease, that testing should only be done, and, especially, the results of tests should only be conveyed, in the context of adequate counseling and psycho-social support. Nancy Wexler, who is a pioneer in localizing the gene for Huntington Disease comments on this issue as follows. She writes:
"Our experience with genetic diagnostic testing for Huntington Disease in our own country suggests that with intensive counseling, the few people who have tested positively tend, by and large, to do pretty well. In Canada, one person who came for pre-symptomatic testing discovered she was already symptomatic and made a suicide attempt, and there has been one hospitalization in the United States that I know of, for severe depression following a pre-symptomatic positive diagnosis. Most people who have tested most likely positive for the presence of the gene have had this news for only a year or two and we have no idea how this group will respond once they find themselves becoming symptomatic." (bibl. 1)
So they now schedule at least six counseling sessions for patients seeking genetic testing for Huntington Disease; several before and then the others after the test results become available. It seems to me that this is the only morally responsible way in which to proceed.
Who assumes the responsibility for the cost of counseling?
However, I want to go back to the point I made a little earlier, that the bioengineering companies that are developing many of these tests have a financial incentive to get them into physician's offices and to have them used as quickly and as widely as possible. The question arises, where are all the genetic counselor's going to come from and who's going to pay for these sessions - counseling sessions, as many as six, that responsibly need to be offered both pre- and posttest? And in the context of managed care, where physicians are being expected to see patients at intervals of no more than ten or fifteen minutes, this becomes a really serious issue. Because for sure physicians are not going to have the time to do it and it's doubtful that managed care companies are going to be willing to hire the requisite number of genetic counselors. So, there are a whole lot of issues surrounding testing.