Questions Illustrate Trade-Offs of Medical Research : AIDS Test Stirs Fears for Privacy, Blood Safety
A new screening test to protect the nation’s blood banks from the deadly AIDS virus is seen by many public health officials as one of the few encouraging elements in the grim struggle against the disease, which has already struck 8,215 persons in the United States, killed 3,921 thus far and still defies treatment.
Yet the test, which will soon be administered to donors by blood collection centers nationwide, has also provoked unexpected concern that it may lead to unfair treatment of homosexuals and others even though they may pose no health threat to the public.
While not opposing the testing of blood donors or disputing the importance of protecting the public, gay rights activists, ethicists and some scientists warn that insurance companies may obtain test results and use the information to deny medical or life insurance to individuals who may not have or get the disease--or that employers may use the results to discriminate against homosexuals.
Test Indicates Exposure
The test, which indicates that individuals have been exposed to the virus that causes acquired immune deficiency syndrome but does not establish whether they have the disease or will develop it, illustrates the problems and trade-offs that often are involved in scientific progress.
“As with every major advance in medical technology, there are great ethical and social risks involved,” says Ronald Bayer, an associate at the Hastings Center, an ethics think tank outside New York City. “It really is a version of having let the genie out of the bottle. But we can’t play ostrich. We have to deal with the ethical and social risks, and there are many.”
AIDS, which the federal Health and Human Services Department has declared its No. 1 health priority, is caused by a virus that destroys the body’s immune system, leaving it vulnerable to a range of opportunistic illnesses. The disease is apparently spread through sexual contact and blood and blood products.
Thus far in the United States, 73% of the victims have been male homosexuals, while only about 1% have been the recipients of blood transfusions. No one afflicted with AIDS has regained lost immunity.
The new blood screening test does not diagnose AIDS. It simply detects the presence of antibodies to the HTLV-III virus, which causes AIDS. A positive test indicates that the virus has been in the bloodstream, doctors say, but does not necessarily mean that the individual will develop AIDS or transmit it.
Several Questions Raised
No one denies the importance of taking advantage of every new technology to protect the nation’s blood supply, but gay rights leaders and some medical ethicists raise such questions as these:
--Although blood banks are supposed to keep confidential the lists of donors whose blood is unacceptable, will the names of those who test positive for AIDS antibodies be adequately protected? What can be done to ensure against the possible violation of privacy?
--Will everyone tested be given complete information--a process known as “informed consent”--regarding what the test will or will not show?
--What will be the psychological and medical impact on those who test positive? Will the results sow panic among individuals who in fact may never develop the disease?
Even the hope that the test will enhance the safety of the blood supply has been challenged.
It is suggested, for example, that gay men who otherwise would have voluntarily refrained from donating blood--because they are a known high-risk AIDS group--will now give blood in order to have their blood tested. And, because of the possibility of a false negative--a test taken, perhaps, after exposure to the virus but before antibodies have formed--there is also a chance that contaminated blood will enter the blood supply despite the screening.
Gay rights activists find themselves in a particularly difficult position: Many are urging gay men not to take the test but also are asking that sites away from blood banks be available if gays wish to be tested. In California, Assembly Democratic leader Mike Roos has proposed setting aside $3 million for such testing in county health clinics.
Want Peace of Mind
“Given the level of panic over this disease, gay men will still want this test,” says Jeff Levi, a spokesman for the National Gay Task Force. “They think it will give them peace of mind. But if they test positive, they will panic. If they test negative, they may be falsely reassured.”
While public health officials agree that the accuracy of the test still needs to be improved, they insist that the benefits in safeguarding the nation’s blood supply far outweigh the problems.
“The test is sensitive enough to pick up reasonable numbers of people,” says Dr. John Petricciani, director of the Food and Drug Administration’s division of blood and blood products. “If one did nothing at the present time, the false negatives are still going to go through--but at least this way, you pull out the positives.”
Gilbert Clark, executive director of the American Assn. of Blood Banks, says: “The test is not perfect. It will get better. But it will remove blood units from the system that should be removed.”
Once large-scale blood screening begins, the names of everyone who tests positive will be recorded. Clark says that blood banks, which now routinely test blood for hepatitis B and syphilis, strictly preserve the privacy of those who test positive--and intend to do the same with the AIDS test. He concedes, however, that no guarantee of total protection is possible.
California Lists
In California, where there have been 1,845 cases of AIDS, the state public health department is required by law to keep the names of everyone who is not permitted to donate blood. Dr. James Chin, chief of the state health department’s infectious diseases section, says he would like to add the names of those who test positive for AIDS.
But, in a further attempt to protect confidentiality, Chin is proposing that all the names be part of one general registry--and that the registry not specify which disease is associated with each name. “It may require legislation,” he says, and Roos’ bill would accomplish what Chin is seeking.
In New York City, which has had 2,941 AIDS cases--the largest number in the country--Health Commissioner Dr. David J. Sencer has said flatly that he opposes a list of any kind that could become public.
Even if the names do not end up in public files, positive test results will almost certainly appear in personal medical files. Those who test positive will probably seek help from their own physicians.
“People think their medical records are confidential but, in a sense, they’re not,” says Dr. Neil Schram, past president of the American Assn. of Physicians for Human Rights. “Health or life insurance companies can’t get to your records unless you sign a release. But if you want coverage, you sign.”
The National Gay Rights Task Force’s Levi predicts other dangers--especially if the test is widely used outside blood banks. “An employer could make the test a prerequisite for employment,” he said, “particularly in food handling industries or health care jobs or the military. It could be used as a mechanism to screen gay men out of the job force.”
The Health and Human Services Department, in an attempt to address some of these concerns, recently issued guidelines for blood collection centers and physicians and also agreed to examine ways of making alternate test sites available for those in high risk categories who want to take the test. They urge blood banks to inform all potential donors that their blood will be tested for AIDS antibodies and insist that positive test information be given to the donor “by an individual especially aware of the sensitivities involved.”
HHS affirms the importance of privacy and suggests that “facilities should consider developing contingency plans in the event that disclosure is sought through legal process. . . . Disclosure of this information for purposes other than medical or public health could lead to serious consequences for the individual.”
