TESTIMONY OF THE AMERICAN CIVIL LIBERTIES UNION FOUNDATION
AND THE AMERICAN CIVIL LIBERTIES UNION'S PUERTO RICO CHAPTER
IN OPPOSITION TO REGULATION NUMBER 87
By Michael Adams, Staff Counsel, ACLU AIDS Project
From time to time we as a society are faced with situations in which the fundamental civil liberties which each of us possesses, including the right to privacy, are in conflict with our need to protect public health. During those times, we must make difficult choices, balancing the individual's right to privacy or other basic civil liberties against the Government's responsibility to protect the health of the public. This is not one of those cases. Fortunately, the right of every citizen of Puerto Rico to privacy and the need of the Government to prevent the spread of AIDS are not in conflict. To the contrary, protecting the right to privacy of Puerto Rico's citizens also helps in the fight against AIDS.
There is no doubt that the Constitution of Puerto Rico and the Constitution of the United States guarantee that, under most circumstances, the citizens of Puerto Rico have the right to keep information about their personal health private. The Constitutions of Puerto Rico and of the United States also guarantee, under most circumstances, that the Government may not require citizens to make a report to a government agency about their private sexual relationships. If it were true that the spread of AIDS could be prevented or slowed by reporting the names of people who are HIV positive to the Government, and forcing those people to report the names of their sexual contacts to the Government, we would have to consider whether slowing the spread of AIDS was important enough to defeat the fundamental privacy rights of Puerto Rico's citizens.
But taking away the privacy rights of Puerto Rico's citizens will not do anything to slow the spread of AIDS. In fact, if this regulation is enacted, AIDS will spread more quickly in Puerto Rico. The reason is because study after study shows that mandatory name reporting of individuals who are HIV positive discourages people from being tested for the HIV virus. In our society, there is still tremendous stigma attached to being HIV positive. This is because many people in our society associate AIDS and the HIV virus with the use of intravenous drugs or with sexual activities which they do not accept. Many individuals who are or may be positive live in great fear that other people will learn of their HIV status, because they fear that their neighbors, families and friends may turn against them. These individuals are unwilling to have their name added to a government list of those who are HIV positive, regardless of whether the Government promises to keep that list confidential, since many people do not have faith in these types of Government promises.
Research conducted throughout the United States has consistently shown that reporting the names of people who are HIV positive to the Government causes many people who would otherwise get an HIV test to decide not to do so. For example, a 1995 study conducted at HIV test sites in Los Angeles found that 86% of those interviewed would not have sought an HIV test if they knew that their name was going to be reported to a governmental agency. A study conducted in Alameda County, California in 1989 found that over 60% of persons seeking an HIV test stated that they would not have taken the HIV test if positive test results had to be reported to government officials. And a 1993 study of gay and bisexual men found that the single most important reason given for not being tested for HIV was fear of having their name on a government list. Thus, maintaining the anonymity of testing, and the privacy of the individual, encourages people to be tested for the HIV virus.
It is true that some states have adopted mandatory name reporting of people who are HIV positive. Although we do not yet have very complete information about the effect those policies have had, the most recent study indicates that mandatory name reporting policies are discouraging people from being tested. (See HIV Test-Seeking Before and After the Restrictions of Anonymous Testing in North Carolina, American Journal of Public Health, October 1996, Vol. 86, No. 10 at 1446-1450.)
The regulation proposed by the Department of Health goes far beyond mandatory name reporting, however. The regulation also requires that every individual who tests HIV positive must report to the Government the names, addresses and telephone numbers of all of his or her sexual contacts or pay a fine of up to $5000. The regulation also provides that any doctor employed by the Department of Health who has "reason to believe" that a person is suffering from a sexually transmitted disease (including HIV/AIDS), may obtain an order from the Department to force that person to submit to a blood test.
At the outset, it is worth emphasizing that no State has ever adopted a law or regulation requiring persons who are HIV positive to report the names of their sexual contacts to the Government. And no state has ever given private or public doctors the power to force an individual to submit to a blood test for HIV. There are two reasons why no State has ever adopted such a regulation. First, these requirements are clearly unenforcible and unconstitutional. And second, they will only hurt the fight against AIDS.
To begin with, it is impossible to enforce a regulation requiring that persons who are HIV positive report the identities of all of their sexual contacts to the Government. A person who does not want to cooperate with this forced invasion of the most personal aspects of his or her private life will either provide an incomplete list of sexual contacts or no list at all. It is hard to imagine how the Government could force that individual to provide the identities of sexual contacts, and how the Government will prove that there are sexual contacts which the person has not listed. And it is clearly unconstitutional to give the Government the power to force a person to submit to a blood test whenever a doctor acting without any guidelines decides that such a person might have a sexually transmitted disease.
Equally important, these regulations make no sense because they will only hurt the battle against AIDS. Existing State programs featuring sexual contact tracing, or partner notification, are voluntary because States recognize that, from a practical perspective, it is impossible to force people to identify their sexual contacts. These contact tracing programs have had only limited success in terms of identifying sexual contacts for purposes of HIV testing. And even in voluntary partner notification programs these minimal benefits have often been outweighed by the deterrent effect on testing: many people refuse to be tested if they believe that as a result they will be asked to reveal the identities of their sexual contacts. (See Partner Notification In The HIV Context, AIDS Legal Referral Panel, 1994).
The negative effects of mandatory contact tracing, which is provided for in the Department of Health's regulations, will be far greater. There is no data on such mandatory programs, because no State has ever adopted such an extreme program. But in light of the evidence that mandatory name reporting discourages people from being HIV tested, it must be assumed that a regulation which requires individuals to report their sexual history to a Government agency can only further weaken efforts to encourage HIV testing. When a positive HIV test result means an individual will be forced to identify all of their sexual contacts to the Government or pay a fine of up to $5000, many people will simply choose not to be tested. This would be a tragedy, in light of the new treatment possibilities which now exist.
Finally, giving the Department of Health power to force suspicious persons to submit to a blood test is both unprecedented and seriously misguided. Because such a standardless provision is clearly unconstitutional, no State has ever chosen to enact such a law. Provisions such as this invite discriminatory application, since doctors will be placed in the position of deciding who is a "suspicious person" without any guidelines as to how to make this determination. Moreover, such coercive and heavyhanded regulations can only increase distrust in Government agencies, which will cause many people to avoid contact with the public health system when fighting the AIDS epidemic requires just the opposite.
For all of the reasons discussed above, the American Civil Liberties Union Foundation and the American Civil Liberties Union's Puerto Rico National Chapter oppose this regulation and ask that it not take effect.