Mario Cuomo has proudly announced that New York will soon begin the largest study undertaken by any state of where AIDS is moving in the population. More than 100,000 New Yorkers will be tested. They will not know they are being tested for the AIDS virus. Nor will the testers know who is being tested. Those concerned with guaranteeing privacy in AIDS testing have commended the governor for his sensitivity to this priority.
In this blind research study, blood samples originally drawn for other purposes will be taken at random from hospitals, prenatal care clinics, clinics for sexually transmitted diseases and family planning centers. Based on where the sample has come from, along with certain accompanying descriptive materials, the researchers will know whether or not those who test positive are in one of the AIDS high-risk groups. Thereby, Gov. Cuomo told me, "We'll have some solid information on the extent to which AIDS is moving into the general population."
This kind of blind study is hardly novel. The federal Centers for Disease Control, for instance, is working on a blind AIDS study in four hospitals. Nonetheless, despite the general approval of the governor's plan, I wondered about the unknown number of men and women who will test positive as the study goes on and will not have the slightest idea that they are potentially among the victims they read about.
New York State's health commissioner, Dr. David Axelrod, the governor's adviser on these matters, says there is no ethical problem. Oh, there would be, Axelrod adds, if there were a cure for AIDS, or even an effective long-term treatment. Then, the state would be at fault -- even in a blind study -- for allowing those who were found with the virus to remain ignorant.
Axelrod blithely overlooks another ethical dimension to this study. Precisely because there is no cure, those who have the virus should be told so they can change their sexual practices and prevent their transmitting the virus to others.
Axelrod's skewed ethical perspective is the norm among the AIDS establishment -- many public health officials, homosexual rights groups, the editorial writers of The New York Times, the American Civil Liberties Union, et al. Their primary focus is usually the privacy fears and needs of those who are infected and those who have AIDS. Accordingly, with regard to this blind study in New York State, Axelrod does not speak of the ethical problems involved in people getting infected with the AIDS virus by those carriers whose situation is hidden from the state -- and from themselves.
Some epidemiologists tell me that though they are uncomfortable with a procedure that does nothing to warn people of the danger they're in, they support the Cuomo-Axelrod project because, as one of them puts it, "There is such resistance to widespread testing that at least we may find out some valuable data by making sure there is absolutely no way that confidentiality can be broken."
Absolute confidentiality does have certain drawbacks. I expect that some of those in the New York study, maybe most of them, might figure they're entitled to be treated with sufficient respect to be informed if their lives, down the line, are likely to be turned upside down.
There was a possible alternative to this airtight design. If Cuomo had instituted routine testing, he might have gotten an even better map of the migration of the virus. This approach involves people being asked -- when at a hospital, a clinic, a drug rehabilitation center or making a prenatal care visit -- whether, among other tests being routinely taken, it would be okay to take one for the AIDS virus. If the patient declines, that's the end of it. But doctors I've spoken to believe that most would not decline. If the patient agreed, he or she would be informed of the result of the test.
I asked Cuomo why he had not tried routine testing. He preferred not to, he said, but uncharacteristically, he was not able to tell me why. He did emphasize, however, that wholly voluntary testing is the best approach because you don't "scare away those who could benefit the most."
None of the 100,000 New Yorkers in this new blind study can possibly be scared away. They are the ideal subjects for data gathering by the state, for they will have no say whatever in what's going on.
A lot of experts and the ACLU have been casually speaking to the large and growing number of Americans who worry that they may unknowingly be carrying the AIDS virus. They're told not to overreact. It's unfortunate that these people can't speak for themselves. Their priorities might be quite different from those of the experts.