AIDS Scientist Defies Law; Refuses to Name Patients : Health: Doctor says the Colorado statute hampers research. He asks U.S. to back his shielding of identities.
In a case likely to have national repercussions, a prominent AIDS researcher in Colorado is defying a state law that requires him to report the names of AIDS-infected study participants and has asked the federal government to help him protect their confidentiality.
Twenty-three states currently require health-care professionals to report the names of individuals infected with the Human Immunodeficiency Virus, and the Colorado case is believed to be the first time that a researcher has refused to comply.
“This information belongs in a doctor’s office, not in a mainframe computer data base,” said Dr. Robert T. Schooley, head of the infectious diseases division of the University of Colorado Health Sciences Center in Denver. “The decision to participate in research becomes very coercive if individuals are told that unless you are willing to have your name on a state list, you can’t have access to the newest approaches in AIDS therapy.”
The outcome of Schooley’s action is likely to have an impact not only on federally sponsored AIDS research, but on the overall question of reporting the identities of HIV-infected persons, an issue that has become extremely controversial in recent months.
While reporting of fully developed cases of AIDS is required by all states and has not been challenged, opinion has long been divided over the value of reporting the names of individuals who are infected but not yet ill. Recently, the American Medical Assn. voted to support mandatory reporting of HIV-infected persons.
Some segments of the public-health community argue that such information is essential for tracking the epidemic and for partner notification. Others, however, insist that it is a disincentive to testing and therefore will actually speed the spread of the disease.
“Most people who are HIV-positive are not identifiable as such, and a positive test result is, for many, the equivalent of a yellow star,” said Tom Stoddard, executive director of the Lambda Legal Defense and Education Fund, which has offered to defend Schooley against possible prosecution.
Schooley has asked the U.S. Department of Health and Human Services to provide him with a “certificate of confidentiality” that would allow him to keep the names private. Such protection is possible under a program begun in the early 1970s involving subjects of drug, alcohol and mental health research. The law was recently expanded by Congress to apply to health research in general, including AIDS.
But officials at the Centers for Disease Control, the HHS agency responsible for coordinating public health activities with the states, said they were reluctant to support Schooley. Doing so, they said, could damage their efforts to set up a national AIDS surveillance system with the states.
The final decision on whether to grant the certificate of confidentiality rests with Health and Human Services Secretary Louis W. Sullivan, who is expected to give considerable weight to CDC’s recommendation.
“HIV reporting is often misunderstood as an end in itself, but it is merely a tool,” said Dr. Gary Noble, the CDC’s deputy director in charge of AIDS activities. “It is the first step in ultimately what will be a useful system for monitoring the course of the epidemic, and for identifying localities where greater prevention efforts are needed.”
Reporting of fully developed AIDS cases already plays an important role in determining how federal funds will be allocated to the states for care and other programs, he said. Eventually, information gathered about the prevalence of HIV infection could have a similar influence, he said.
Noble stressed that the CDC itself does not intend to record names. Any data received by the federal agency from the states will not include names or any other identifiers, he said. But name collection by the states is necessary to avoid duplication, he said.
Noble described the Colorado situation as “difficult and thorny,” and said it required a “balance” between two “legitimate” medical and public health objectives.
“Can the needed research be accomplished despite laws like this one? Unfortunately, I just don’t know the answer,” he said.
In resisting Schooley’s request, the CDC may be setting the stage for a confrontation with other federal officials, particularly in the research community, who will probably oppose any policies they believe could hurt federally sponsored research.
Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases--the lead federal AIDS research agency--said he was aware of the Colorado controversy, but he declined to discuss what actions he planned to take.
“Obviously I am concerned about anything that might have a negative impact on the conduct of our clinical trials,” he said. “However, I have not yet spoken first-hand to the individuals involved in any such decision-making regarding certificates of confidentiality. I would have to reserve any comment until I have the opportunity to discuss this with them in detail.”
In 1985, Colorado became the first state to begin gathering names of the HIV-infected. Neither California nor New York--the states with the highest number of AIDS cases--have such reporting requirements. In fact, California has specifically rejected such proposals.
Dr. Thomas Vernon, outgoing executive director of the Colorado state health department and the architect of its reporting policy, said that fears regarding the collection of names were unwarranted.
“Public health has shown its ability to protect confidentiality,” he said. “We have demonstrated for a very long time that we can both protect people from disease transmission and protect individuals from breaches of confidentiality and privacy.
“We in Colorado have said from the outset of this epidemic that we are not going to do anything less for this epidemic than we have done historically for tuberculosis, measles, syphilis, and other epidemics.”
But Schooley and others said that the AIDS epidemic, with its unique political and social ramifications, is unlike any other epidemic and requires a different approach.
“Although I’m quite confident that safeguards can be put into place which would make the names gathered quite secure, what matters more is the perception of what might happen,” Schooley said. “When people see the Noriega tapes on CNN, it gives them pause when the federal government assures them that their names will be kept secret.”
Schooley said he would continue to defy the Colorado law even if HHS refuses to issue the certificate of confidentiality, opening himself to possible prosecution.
“We’re not just talking about this having a chilling effect on AIDS research,” he said. “If officials persist in this policy of recording the names of the infected--not just in Colorado, but everywhere--it could have a major impact on people’s willingness to be tested. This means they won’t find out they are infected. It means they might not receive the medical care they need, and might be more prone to engage in behaviors that would enhance the spread of the virus.”
Stoddard, of Lambda, agreed. “The typical bureaucratic tendency is to collect any bit of information it can get its hands on, regardless of the actual consequences to real people,” he said.