Markkula Center of Applied Ethics

AIDS, Privacy & the Community: The Ethics of Mandatory AIDS Testing and Disclosure

AIDS is the new plague--a disease that is not only physically and psychologically debilitating, but culturally and socially devastating as well. Like the plague, AIDS has caused fear, prejudice, and even panic in society--in fact, the backers of a 1986 California initiative that would have allowed mandatory testing for HIV infection (human immunodeficiency virus, the virus that causes AIDS) and quarantine of individuals testing positive went by the acronym PANIC (Prevent AIDS Now Initiative Committee).

Public health officials agree that it is in the interest of the public to test for the presence of antibodies to the AIDS virus that indicate HIV infection and to identify "seropositive" individuals (individuals whose blood tests positive for AIDS antibodies), since most people probably will modify the behaviors that cause the spread of the disease if they know they are infected. There is also general agreement that it is in the interest of infected individuals to get tested, since early treatment with AZT has proven effective in slowing the progress of the disease.

But in the highly charged atmosphere that has quickly developed in response to the AIDS epidemic, there are serious ethical concerns about HIV testing--particularly about suggestions that mandatory testing be imposed and that the results be disclosed in order to protect the health of the public. To address these concerns, the Center for Applied Ethics held a symposium on February 3, 1990, supported in part by a grant from the California Council for the Humanities, a state program of the National Endowment for the Humanities.

The speakers were John Golenski, S.J., Ed.D., a psychologist and ethicist who has consulted on ethical issues at medical institutions in the western United States; Bernard Lo, MD, chief of the program in medical ethics at the University of California at San Francisco; and Richard Wasserstrom, Ph.D. professor of moral philosophy at the University of California at Santa Cruz. The excerpts presented here highlight some of the issues they addressed.

Videotapes of AIDS, Privacy, ~ the Community, are available for $16.50 by writing; Lo the Center for Applied Ethics, Santa Clara University, Santa Clara, CA 95053, or by culling 408/554-5319.

Dr. John Golenski: A Humanist's Perspective
The question we must ask ourselves is whether or not we should have the kind of mandated testing for AIDS that the PANIC [see above] initiative proposed. And should we have the associated reporting mechanism that would follow upon such testing?

The fact is, [apart from the PANIC proposal] there are a number of different kinds of testing programs we could have, and a number of different things we could do with the results. We could, for example, test only those people who gave informed consent to the test and could put in place a program to counsel people before and after the test. In addition, we could establish a contact tracing program so that if we discovered a person was HIV positive, we could question him or her about any previous sexual contacts and attempt to notify those people of their risk. Or, third, we could also mandate legislatively that even if an individual refused to notify persons who were known to be at risk, the physician, the tester, or a public health official could, against the individual's wishes, notify those persons of their risk. And finally, we could do as some states have done, and put in place some form of anti-discrimination legislation to protect people who tested positive or whose results were reported in some fashion.

[In considering these possibilities, it's important] to think about the factual information we have about HIV testing. There is, for example, a documented long latency from the time a person is initially infected until the time a person may actually show positive results on the antibody test. Also, there are people who come out as false negatives. And most serious, there are false positives„people who are not infected who come out as positive for antibodies.

The PANIC position is that there are some public health reasons for obtaining and releasing the information that they believe mandated tests would yield. Their view is that if we have this information we can do better strategizing in terms of health delivery services, diagnostic services, and protection for people who are not currently infected.

Opponents of mandatory testing suggest a variety of reasons against such a policy. First of all, they claim, it plays into an already deleterious response to various populations that are at risk, and who are already discriminated against in a variety of fashions, not the least of which is in the provision of health care services.

Secondly, they believe that with a possible or probable„inappropriate release of information about the test result, these individuals will suffer discrimination not just in terms of health services but also in other areas of life.

Opponents also see a risk that mandatory testing will result in a significant impairment in the physician-patient relationship. That relationship is based on a sense of trust, and trust depends on the ability to keep a secret.

Finally, opponents of mandatory testing and mandatory reporting of test results are convinced that such policies will drive those who are at risk underground, probably discourage testing at all, and in that sense, spread the infection rather than curtail it.

What's at stake on both sides of the argument is a sense of safety being in jeopardy. One group is afraid of both physical and social contagion. They're afraid of losing anchors in a social structure they feel is fast on its way to destruction. They fear that there will be some kind of contact between themselves and people with whom they substantially disagree about everything, including lifestyle, orientation, basic moral values and ways of being a human person and an American citizen. The other group fears a loss of safety in terms of protection against discrimination, even physical violence, and loss of necessary medical care and insurance.

The argument for mandatory testing is basically a utilitarian argument. It is that it is acceptable--not desirable, but acceptable--to curtail the rights or liberties of some individuals for the purposes of accomplishing a greater good for the greater number. The other side argues an essentially deontological position, saying that there are certain inalienable rights which human beings hold by virtue of being human, that the state should not be allowed to curtail those for any reason, and among those rights are the rights of privacy and autonomy.

With regard to the utilitarian perspective, one might ask, from a scientific, a public health, or a societal perspective, is the greater good accomplished by mandatory testing? Is the greater good accomplished by segmenting members of our population, labelling them, and separating them out? And if so, can we in fact diminish the burdens associated with either course of action? Are there in fact safeguards we could enact in order to protect those individuals who are tested? And do we find it acceptable that people who are currently not receiving an equal share of the benefits of our society should accept the further burden that would be produced by the testing in order to accomplish the so-called greater good?

Now with regard to the deontological perspective--if we accept that there are certain human rights which are inalienable, irrespective of certain behaviors being demonstrably harmful to others, then a related question arises. Is the notion of autonomy, the person's ability to act at liberty, one which is so important to us that we lose sight of how we are in fact connected to each other?

There may be a third position--a religious position, in a sense--which says that we are in fact intrinsically connected to each other by virtue of being human, and that we are human not only because we have inalienable rights but also because we have responsibilities to each other, and there may be a way for us to use the scientific testing that we have available to us in such a way that we protect those who are tested, and yet have available to us the information that we need.

It may be possible. I would like to think that. I would also like to think that we have a sufficient orientation to justice that knowing that there are populations within our community who have been and are discriminated against, that we can make a substantial commitment to right that wrong by an increased allocation of resources to them for health treatment and prevention--to, in a sense, redress the imbalance--because we're in this together.

Dr. Bernard Lo: A Physician's Perspective
There's fairly wide agreement now that people who are at risk for HIV infection should be encouraged to have voluntary testing, for the direct benefits to themselves as well as for public health benefits. HIV testing has also been suggested in other situations, particularly for people who are considering marriage or pregnancy, mainly because HIV illness in children is devastating. Many people, if they knew that they were at risk of having an HIV infected baby, might choose to forgo pregnancy, terminate pregnancy (if that's acceptable to them) if they are already pregnant, or adopt.

There are different kinds of HIV testing: voluntary testing, where the person tested makes the decision; mandatory testing, where you are tested whether or not you want to be tested; and routine testing, where, if you got some blood drawn for some other reason, an extra tube of blood would be drawn and sent off for an HIV test.

There are already situations of mandatory testing. If you donate blood, you're tested for HIV infection. If you join the US military or the foreign service, you're tested not just on entry, but periodically. Immigrants to this country are tested for HIV, and inmates in the federal prison system and in many state systems are tested for HIV. Illinois and Louisiana actually had statutes requiring premarital testing, but they've both been repealed. There's a lot of feeling that society should be spared the tragedy of having these HIV infected babies, and that one way to achieve that goal might be to do premarital testing. But there's a problem with that approach„many babies are born to people who haven't had a marriage license. So when mandatory premarital testing was tried in Illinois, the number of people identified was extremely low--.01 percent, which is about half of what it was among blood donors at that time. Furthermore, each case of HIV infection identified cost the people of Illinois $312,000. Had that same amount of money been put into education about HIV infection directed at [high risk groups such as] IV drug users, and adolescents, it probably would have done more good. Where mandatory testing is proposed, one thing that's never really talked about is how it will work--how you're actually going to round up the people and get them tested, and then get the results to them. Even in anonymous test sites, about 20% of the people don't come back for their test results. So there are practical problems to mandatory testing that need to be addressed.

Now let me talk about confidentiality. One reason for HIV testing is to protect those who are exposed to those who are sero-positive. There are some interesting assumptions behind this idea of revealing the results to the partners of those who are HIV infected namely, that they don't already know that either the person is seropositive or that the nature of the act they're doing places them at high risk.

Partner notification has been tried in various situations and the evidence is mixed. When you have a stronger program of partner notification, fewer people come in to be tested, and fewer seropositive people are identified. The state of Oregon, at one point, had only confidential testing, and then set up anonymous test sites. When they allowed people to be tested in a way that really guaranteed that the results were only disclosed to people to whom the patient wanted them disclosed, the number of people presented for testing went up by about 50%, and the number of people identified as being seropositive doubled. So if you believe that identifying more people is good because they'll get better care and they'll stop their high-risk behaviors, the option of totally anonymous testing in Oregon seemed to help.

You may have heard about Colorado, which has a public health reporting requirement. The public health policy in Colorado is to treat HIV infection like other contagious diseases, where the names of people who test positive are reported to public health officials. But no effort is made to accurately obtain their names. So the most common names of people getting HIV testing in Colorado are Mickey Mouse, Donald Duck, and, for a while, Ronald Reagan.

This issue of HIV testing is going to be with us and is going to be more and more difficult. I think there are several problems that will come up as things develop. The tests are going to change and the problem of lab error will, hopefully, be diminished. But we always have to remember that mistakes happen, and a false positive HIV test can be a real tragedy. We need to take precautions to make sure that people aren't told they're positive when in fact they're not really infected.

I think that the risks and benefits of testing for a patient are going to change. I'm optimistic that we will find more treatments, and less toxic treatments for HIV infection. Evidence that early treatment is effective is a strong argument for testing. I hope that people at risk will understand those arguments and be willing to come forward voluntarily.

If we really are serious when we say that one of the reasons we want to test people is to find out who's at risk for spreading the disease, then it seems to me that more people will come forward and be tested if we can guarantee those sero-positive people that they won't suffer discrimination. And I think that to assert that there is no discrimination or that discrimination is adequately handled by current regulations and statutes is naive or cruel. As a society and as health care workers, we can do a lot to make testing more beneficial to patients. I would hope that rather than asking, "Should we or shouldn't we?" we should be asking, "What steps can we take to make HIV testing more desirable and more attractive to persons at risk?"

"More people will come forward and be tested if we can guarantee those seropositive people that they won't suffer discrimination"
-Dr. Bernard Lo

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