Disclosing AIDS: The Issue of Privacy Versus Protection of Potential Victims

Should medical and health professionals notify partners of AIDS victims if the patient is unwilling to do so? Should they notify partners of people who test positive for HIV (human immunodeficiency virus)? Men and women participants at a recent Stanford Medical School seminar on medical ethics unexpectedly found themselves on opposite sides.

The questions were not academic: Both the seminar leader--a theologian of unquestioned integrity--and an out-of-the-closet faculty member whose practice includes many AIDS patients were then counseling bisexual married men resisting counselor pressure to tell their wives.

Both male professionals believed, albeit unhappily so, that their first responsibility was to the client. In this they were bolstered by the 1984 “Agnos Law,” sponsored by Assemblyman Art Agnos (D-San Francisco), making it unlawful in California for a physician to disclose a positive AIDS test result without the patient’s written consent. Women seminar members (undergraduates, medical students and researchers) protested that this amounted to a death sentence on them and any children they might subsequently bear.

The controversy between medical confidentiality and the individual’s right to privacy, and protection of an innocent individual--and ultimately public health itself--is becoming intense. Pressure within the public-health community is so strong that ordinarily outspoken epidemiologists and health officials request anonymity on the subject. At issue are the disproportionate effects of a rigidly maintained confidentiality code on endangered third parties, including heterosexuals, females, minorities and children.

The Agnos law is a deviation from the long-standing practice of tracing and notifying partners of patients who are diagnosed to have sexually transmitted diseases. Public safeguards have long been held to supersede constitutional rights to privacy: Physicians are subject to reporting requirements for cases of certain communicable diseases as well as child and elder abuse.

On one side of the debate are some public-health officials and homosexual organizations (73% of diagnosed cases to date have been homosexual). Some officials once feared that the threat of even limited disclosure would deter at-risk individuals from taking an AIDS-screening test, resulting in an underestimate of the number of cases and a disuse of prophylactic and control measures. AIDS victims fear both the invasion of privacy and the possible loss of jobs, friends and medical insurance, should knowledge of a positive antibody test fall into the wrong hands. This is no groundless fear: In San Francisco, one participant in a Health Department research study was denied health insurance because the hospital that had performed the AIDS test accidentally included a bill for the test in the man’s records.

On the other side are many health officials, practitioners and researchers, backed by the established practice of tracing partners of victims of other sexually transmited diseases and by the common law. In our society a person who knowingly inflicts injury against an unknowing victim has commited a tort, in legal terms, and can be held responsible for damages. In recent years cases have been won by plaintiffs (largely female) contracting herpes from lovers who knew they had the disease but did not disclose it. Are persons privy to confidential information that may harm a third party obligated to inform that party? For years lawyers, priests and psychiatrists have painfully struggled with this dilemma. In more than a dozen states, courts have ruled yes, if there is a “serious threat of danger.” The California Supreme Court led the way in its 1974 Tarasoff decision: The parents of a murdered woman student successfully sued the psychologist who had treated her assailant. The psychologist had warned campus police of his client’s threat against Tatiana Tarasoff but had failed to warn Tarasoff herself. One could argue that since no one sexual act carries the certainty of contracting AIDS, the Tarasoff decision would not apply. By this reasoning, however, playing Russian roulette would also not be considered a serious threat. Inasmuch as contracting AIDS is tantamount to a death sentence, given current medical knowledge, one could equally well argue that a health professional who fails to notify an at-risk party is an accessory to homicide.

With the retirement last month of Dr. James Chin, who was chief of infectious disease control for California, the California AIDS Advisory Committee membership is now nearly all homosexual. Those most likely to be injured by a non-disclosure policy are not represented. Can they rely on such a committee--made up of people understandably desirous of complete privacy--to make the protection of public health its No. 1 priority?

This question sounds biased against homosexuals--but it could equally well be termed sexist or racist, since the new victims of AIDS are increasingly female, black or Latino. For even as the homosexual community adopts safer sexual practices and slows disease transmission among homosexuals, AIDS is spreading among heterosexuals.

Intravenous drug users, primarily on the East Coast, accounted for 17% of AIDS victims reported during 1981-1986. Exclusive of male homo/bisexuals, 68% of male cases and 52% of female were acquired through intravenous use; of all adult non-homosexual AIDS cases reported through 1986, 50% were black, 26% white and 24% Latino. Although only 4% of reported U.S. AIDS cases resulted from heterosexual intercourse, the proportion of females acquiring AIDS through heterosexual contact increased from 12% to 26%. Since 77% of affected women (compared with 70% of affected men) are between ages 20-39, many may become pregnant before learning of their HIV-positive status and of its ominous implications for their babies, half of whom will also contract AIDS. Excluding those acquiring AIDS through infected blood products (about 20% of the total; improved blood-screening procedures have now blocked this source of the disease), nearly all pediatric AIDS cases are among minority groups.

The National Academy of Sciences estimated last year that the incidence of AIDS among heterosexuals would grow sevenfold from 1986 to 1991. Most women, especially minority women, are not as yet aware that they are at increased risk of contracting AIDS compared with heterosexual men. But since the pool of infected men is much greater than that of infected women, women simply have a greater chance of encountering an infected partner.

According to Dr. Mary Guinan, acting assistant director for science of the U.S. Centers for Disease Control, “All semen recipients are at risk.” The San Francisco Women’s Cohort Study estimates that 20% of women in a steady heterosexual relationship with an infected partner will be AIDS-positive after a year, compared with 10% of exposed men. Women and minorities can justifiably argue that any policy of secrecy that heightens the risk run by unwitting partners of AIDS victims discriminates against them.

Ultimately the economics--if not the changing sociology--of AIDS may force legislators to renounce non-disclosure. Any practice that slows the transmission of the disease will weigh heavily among those confronting soaring public-health budgets. Estimates of treatment costs for an average AIDS patient, from onset of the disease to death, range from $40,000 to $150,000. The U.S. Public Health Service suggests that by 1991 the annual AIDS treatment bill could reach $16 billion.

Ironically, tracing and notifying the partners of an AIDS patient will also require increased funding of chronically underfunded preventive programs. In recent years, budget limitations have precluded such California counties as San Mateo and Santa Clara from notifying most partners of sexually transmitted disease patients, while San Diego has concentrated meager resources on the burgeoning number of penicillin-resistant gonorrhea cases.

Pressure to alter confidentiality practices is building. Agnos himself supports a bill introduced by Assemblywoman Teresa P. Hughes (D-Los Angeles) giving doctors immunity from prosecution if they tell a spouse that a patient has tested positive for HIV. The California Medical Assn. has endorsed a proposal permitting doctors legally to tell other physicians that a person has tested HIV-positive. The same CMA resolution also urges that blood banks and health departments be allowed to share information on such individuals. Health professionals need to know the AIDS status of a patient in order to prescribe appropriate treatment and to take proper precautions themselves.

Given the reactions of a frightened society, we must strengthen confidentiality safeguards in ordinary record-keeping even as we try to specify narrow exceptions. We must continue to educate an unwilling and scientifically untutored public about the realities of AIDS transmission. But we must also act to protect people at known risk, both out of humanitarian concern for the innocents and out of societal self-interest in arresting the spread of a deadly disease.