“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

PIERCING THE VEIL OF SECRECY IN HIV/AIDS AND OTHER SEXUALLY TRANSMITTED DISEASES: THEORIES OF PRIVACY AND DISCLOSURE IN PARTNER NOTIFICATION

http://www.law.duke.edu/

LAWRENCE O. GOSTIN^*
JAMES G. HODGE, JR.

Part 2

Section: 1 2 3

1. Privacy. Infected persons have a strong ethical claim to the privacy of their medical diagnosis, records, and their health status generally.²⁶⁴ Privacy interests, however, are sacrificed when necessary to reduce a risk to their sex partners. The degree of sacrifice varies depending upon the form of partner notification. Where partner notification is performed pursuant to one's duty to disclose, privacy interests are swept aside since the duty requires infected individuals to in- [*pg 63] form their partners of their own health status.²⁶⁵ Although bound to maintain the confidentiality of a patient's medical records in light of the HCW/patient relationship, HCWs nevertheless are compelled ethically,²⁶⁶ in limited circumstances, to inform partners of their exposure to infection under a duty or privilege to warn.²⁶⁷ Whenever a HCW is compelled under a duty to warn unsuspecting partners, the confidentiality of infected individuals is compromised. In most cases, the fulfillment of the duty to warn requires the HCW to identify specifically the source of exposure to partners so they are aware of the actual source of danger.²⁶⁸ Privacy interests of infected individuals thus are not preserved through the fulfillment of the duty to disclose or warn.

Contact tracing programs attempt to preserve the privacy interests of infected individuals in two principal ways: (1) contact tracing programs are voluntary in nature;²⁶⁹ and (2) many programs attempt to conceal the identity of the index case from exposed partners to protect the index case's confidentiality.²⁷⁰ In reality, however, neither of these protections are wholly effective in limiting the incursion on privacy interests. To the extent that contact tracing is voluntary, the privacy interests of infected individuals are protected since they can choose not to participate. Neither infected persons nor their physicians, however, can avoid their respective duty to disclose or warn. Since contact tracing offers a means through which partners can be notified in satisfaction of these duties, participation is not merely encouraged. Rather, contact tracing presents the better of three options facing an individual infected with an STD in many jurisdictions: either notify your partners on your own without any assistance, await the action of your doctor who notifies your partners of your infection, or participate in a contact tracing program where counseling and other assistance is available. Contact tracing thus can be viewed not so much as a voluntary choice of individuals, but rather as a preferred method of satisfying a legal duty.

[*pg 64]

While the success of contact tracing largely is tied to "the record of public health officials in preserving the confidentiality of the information obtained,"²⁷¹ attempts to conceal the identities of those who voluntarily participate usually are in vain.²⁷² The maintenance of patient confidentiality through contact tracing is a factual myth.²⁷³ Confidentiality is breached by the mere participation in contact tracing programs since public health authorities become aware of the STD status and identity of index cases for the sole purpose of assisting in the dissemination of exposure information to partners.²⁷⁴ Many partners independently are aware of the source of their infection when contacted. Partners who learn directly or indirectly of the identity of index cases may relay information about the index case to others. Confidentiality is also an ethical myth as an infected individual's privacy rights cannot be preserved where she discloses her private facts to an agency that intends to disclose that information to partners who the infected person knows and who likely know her. Persons who predominantly benefit from confidentiality protections of contact tracing are often the same persons whose lifestyles involve risky behaviors with numerous partners whose identities are either unknown or cannot be recalled over long time periods, as seen with STDs like syphilis and HIV that have long asymptomatic periods.²⁷⁵ As a result, pri- [*pg 65] vacy interests of infected persons are sacrificed through systematic contact tracing programs that in reality are not completely voluntary nor confidential.

2. "Right to Know." Balanced against the claims of infected persons to privacy are the equally compelling claims of their partners to be informed of the risk. Sex partners understandably seek to know unforeseen dangers of which others are aware.²⁷⁶ Partners claim a "right" to know that they have been exposed to infection because (1) knowledge empowers individuals to avoid continuing risks; (2) knowledge of infection allows for early treatment; and (3) knowledgeable partners can adapt their behavior to prevent further transmission of infection to others.²⁷⁷ Just as partner notification does not protect fully the privacy rights of infected persons, it also fails to protect fully their partners' privacy rights. Since contact tracing is by its nature voluntary, index cases are not compelled to participate. Even when index cases choose to participate, they do not have to provide the names of any or all partners, or even to notify partners under patient or conditional referral programs. In addition, a high percentage of partners cannot be located due to inadequate or incorrect information volunteered by index cases.

Conditional and provider referral programs do not actually provide the names of the sources of potential infection to partners, thus leaving some partners with inadequate information to protect themselves fully against a known threat. Although counseling is offered on how to protect oneself against STD infection, not all persons notified of their exposure choose to receive counseling. Some partners, therefore, relinquish their own right to know. Under patient, provider, or conditional referral programs, many partners thus are not informed completely about their risk of infection.

While the exercise of a duty to disclose imposed on infected individuals or a duty to warn imposed on HCWs would resolve some of the weaknesses of contact tracing programs by specifically notifying partners of the sources of their exposure, such duties do not result in reliable notification of partners. Infected individuals regularly ignore their legal duty to disclose without being subjected to significant legal ramifications. HCWs also can be reluctant to notify even when required to do so, as laws that specify when HCWs have a duty to warn can be lofty and difficult to measure. Strong confidentiality measures concerning patient records and medical information, and the threat of legal and administrative action for unnecessary breaches of confidentiality prevent many [*pg 66] HCWs from warning partners.²⁷⁸ Privilege to warn statutes allow HCWs the option of warning in some cases without legal sanctions either for breaches of confidentiality or for failures to warn.²⁷⁹

3. Normative Analysis. Both infected persons and their partners can make normative claims about invasion of autonomy. Persons with infection suggest that principles respect for autonomy militate in favor of privacy.²⁸⁰ Individuals have the right to control the use of health information.²⁸¹ Furthermore, "[t]he principle of respect for autonomy . . . includes the right to decide insofar as possible what will happen to one's person -- to one's body, to information about one's life, to one's secrets, etc."²⁸² A patient's health status, it is argued, ought not to be disclosed without their consent.²⁸³ Partners also appeal to autonomy in claiming a right to know. Partners cannot make rational, autonomous choices in the absence of relevant information.

Both parties base their normative arguments on the principle of autonomy. However, autonomy, when properly understood, favors the partner's claim. Autonomy supports certain legitimate claims to personal information and decisionmaking for which others interests in confidentiality are insufficient to withhold information.²⁸⁴ Autonomous individuals have the right to engage in behaviors of their choosing.²⁸⁵ The autonomous interests of infected persons, however, are not absolute.²⁸⁶ Autonomy, in its most traditional sense, does not extend to behavior that can result in serious harm to others.²⁸⁷ A person with HIV infection has no legitimate ethical claim that maintaining her confidentiality [*pg 67] justifies failure to protect others from potential harm, especially where the threat of harm is imminent or the consequences of such harm particularly are serious.²⁸⁸

The claim of partners to adequate information necessary to support an autonomous decision is stronger. Partners who engage in sexual relations cannot act rationally without knowledge of the consequences. While a partner is free to consent or refuse sex, that choice is meaningless unless it is made with reasonable knowledge of the risks. Partner notification, then, may be justified by a partner's autonomy right to truthful information to guide their behavior.

4. Consequentialist Analysis. Consequentialist theory supports adopting policies that, on balance, produce the greatest benefit for populations as a whole.²⁸⁹ The balance of the ethical claims of infected individuals to their privacy and of partners to know depends on the extent to which the recognition of such claims is likely to lead to improved health among the general population. Determining the balance between these competing interests is complex. The objective is to balance the respective interests of infected persons and their partners in such a way that societal health is maximized. What remains unresolved is whether partner notification represents the proper balance.

Many partners believe that their chances for preserving their individual health rely in substantial part on notification of risk. It follows, they argue, that universal notification would improve all partners' chances. Yet, many infected persons, particularly women, counter this observation by documenting the costs of partner notification on infected individuals. Retribution in the form of domestic violence and abuse is a serious consequence of partner notification.²⁹⁰ In addition, there is a legitimate, unresolved concern that universal partner notification would drive infected persons underground, effectively hiding their STD-positive status from virtually everyone, including partners, doctors, and family members. Determining whether partner notification provides a net benefit to relevant populations truly depends on its efficacy. Privacy rights of infected individuals should yield only if partner notification works meaningfully to alter risk behaviors and to reduce the incidence of HIV and other STDs. This requires a systematic empirical analysis that is discussed later in this Article. ²⁹¹

[*pg 68]

B. Feminist Theories and Sexual Ethics

Feminists have long supported the idea that women should be informed about their sexual risks.²⁹² In many ways, feminist theory simply reinforces the normative arguments previously discussed because women claim that they cannot make autonomous decisions absent critical information regarding risks they face. However, there are several characteristics of sexual transmission of diseases that suggest a distinct feminist perspective. For reasons of biology, epidemiology, and vulnerability, the "right to know" particularly is pertinent to women.

From a biological perspective, women have an elevated risk, as compared to men, of contracting disease within the context of a heterosexual relationship.²⁹³ Some STDs, such as syphilis, are more difficult for women to detect than men.²⁹⁴ This increased biological risk also can be seen epidemiologically. Women currently comprise one of the fastest growing groups of people with HIV/AIDS,²⁹⁵ with increased infection rates seen most heavily among minority women.²⁹⁶

In addition, women are much more vulnerable within relationships, often being economically dependent and subject to physical and psychological abuse. Partner notification assumes that individuals can control their [*pg 69] exposure to the disease.²⁹⁷ Many women, however, lack control over their own exposure because of their inability to make critical life choices due to poverty, domestic violence, and discrimination.²⁹⁸ Women may lack the power in their relationships to require male partners to refrain from sex or to use condoms.²⁹⁹ Partner notification programs that focus on the role of individuals as agents in the effort to control epidemic STDs may neglect the status of women who societally are dependent on their partners, and thus do not possess the same amount of control over their risk of exposure as most men do.

To the extent that public health strategies reflect a masculine structure of personal responsibility, they ignore the reality of many women's lives, including the imminent threat of physical abuse at the hands of notified male partners. Researchers have identified a strong link between AIDS and violence that for women translates into an epidemic potential for domestic abuse.³⁰⁰ Where partner notification has the potential to result in domestic violence against women, "[t]he risk of physical harm to the female patient from her partner may be greater than the potential benefit of warning the partner."³⁰¹

Even if women do have the economic and physical power to require changes in the sexual behavior of their partners, they may not be aware of the risks. Women often do not know they are at risk, or only learn of their positive [*pg 70] status when a partner or child is diagnosed with, or dies from, AIDS.³⁰² In the HIV epidemic, the greatest risks to women are from males who are bisexual³⁰³ or injecting drug users.³⁰⁴ Yet the risk status of men is not apparent and often requires some formal notification.

Feminist theories, despite all their degrees and differences,³⁰⁵ agree that "the evaluation of medical practices must give primary attention to the impact of such practices on women -- not just on individual women but on women as a group, including especially disadvantaged women such as poor women and women of color."³⁰⁶ The HIV/AIDS epidemic has presented a modern challenge to the premises on which feminist support of partner notification is grounded. Although HIV/AIDS generally has been viewed as a gay disease,³⁰⁷ societal views of HIV-positive women have at times been unbecoming. Consistent with traditional societal views of female prostitutes throughout the syphilis epidemic, [*pg 71] women have been viewed as "vectors"³⁰⁸ of disease who infect unsuspecting men or children. The rise of heterosexual and vertical transmission of HIV was attributed in part to women.³⁰⁹ And like other high-risk groups, HIV-positive women became silent victims of the disease as society initially chose to protect the confidentiality of seropositive individuals over female partners' right to know.³¹⁰

Feminists demand that partner notification, like many government-sponsored programs, be analyzed by asking about its specific effects on women. As Katherine T. Bartlett explains:

[A]sking the woman question means examining how the law [or regulation] fails to take into account the experiences and values that seem more typical of women than men, for whatever reason, or how existing legal standards and concepts might disadvantage women. . . . The purpose of the woman question is to expose those features and how they operate, and to suggest how they might be corrected.³¹¹

Feminists evaluate the models of partner notification in the context of the reality of women's lives to protect women as partners, who may not know they are at risk of infection, and to protect women as patients, who must contend with economic dependence and domestic violence. Although notification is important, it may increase the likelihood of harm suffered by women as patients who are dependent economically or who suffer from abuse, and concurrently oppress women by prohibiting them from making their own choices.³¹²

Partner notification from a feminist perspective is both favored because it gives women vital knowledge to protect themselves and disfavored because it potentially exposes women to violence. Some women face consequences including domestic abuse, abandonment, and economic misfortune as a result of notification. Although feminists generally support partner notification in its effort to notify women at risk of infection, they question the development of the methods through which it is accomplished as unresponsive to women's needs.

[*pg 72]

V. EFFICACY OF PARTNER NOTIFICATION

A. Public Health Efficacy: Empirical Analyses

A partner's claim to knowledge of health risks predominantly supports partner notification. Legal analysis holds that information concerning risks to which partners are exposed justifies the duties to disclose and warn and contact tracing, despite infringements on the privacy interests of infected individuals.³¹³ Normative analysis favors partner notification because individuals have a legitimate claim to fundamental knowledge necessary to protect their own health.³¹⁴ Partner notification, however, cannot rely on the moral "right to know" and legal duties alone. Consequentialist and feminist theories expose weaknesses in the support for partner notification. Infected women face the darker side of partner notification, suffering physical, emotional, and economic abuse from the dissemination of information to their male partners. Consequentialism requires objective proof of the efficacy of partner notification even though it commonly is assumed to be an effective public health strategy.

Partner notification as a public health practice demands more than subjective proof of efficacy. Scientifically-verifiable and demonstrably-sound proof that partner notification actually reduces the risk of infection is required. To be effective, partner notification must accomplish substantially its intended goals. First, partner notification must advise partners of the risks of harm so they can make informed choices to reduce the risks. Under this view, even if contacts do not alter their behaviors, there is a positive value in enhanced autonomy. It is necessary to devote a great deal of attention to this first goal. Under the prevalent methods of contact tracing, patient and conditional referral, data suggest that partners often are not informed. In such cases, there clearly is no positive value to partner notification. When partners are informed, at least the normative value of providing this information to autonomous individuals is accomplished.

Second, and more important, partner notification is designed to protect the public health. If partner notification reduces the rate of STD infection as well or better than other public health interventions, it may be regarded as effective. The central question, therefore, is whether partner notification accomplishes the goal of reducing STD transmissions as part of a national, comprehensive public health strategy. Do the notification, education, counseling, testing, and treatment services provided as part of contact tracing programs reduce the transmission rate of STDs, and, if so, at what cost and how? Answering this question is complex. Some studies suggest that partner notification is effective in limited environments involving high-risk populations. Scientifically-objective proof of the efficacy of contact tracing as a widespread public health practice, however, is inconclusive. The accumulated data suggest that partner notification as a national practice to control HIV infection does not work nearly as well as is claimed by its proponents. As a result, support for partner notification based on moral[*pg 73] and legal claims to information loses force where partner notification does not actually serve public health goals.

Examining the scientific efficacy of partner notification is not a simple task. Efficacy is largely an empirical question. Measuring the effectiveness of partner notification through contact tracing is problematic.³¹⁵ No scientifically valid empirical standard exists to measure the effectiveness of contact tracing as applied to STDs across large populations. The consensus of opinion instead holds that "[a]ctive contact tracing programs have been effective (but costly) in controlling localized outbreaks of specific antibiotic resistant strains of sexually transmitted diseases with short latency periods and in targeting specific subgroups of the population."³¹⁶ Studies suggest that STDs such as syphilis,³¹⁷ gonorrhea,³¹⁸ and chlamydia³¹⁹ have been controlled among subgroups through contact tracing. Contact tracing in the context of HIV/AIDS has been challenged on the basis that finding and notifying partners is less effective than with other STDs since there is no cure for AIDS³²⁰ and the long asymptomatic incubation period of the infection makes tracing difficult among populations.³²¹ These observations, however, do not justify a failure to attempt to notify persons at risk of HIV infection. While AIDS remains a terminal condition, new pharmacological interventions can prolong the life of an HIV-infected individual by delaying symptomology.³²² In addition, although it may be difficult to notify former partners of HIV-infected persons, those who are notified are likely to have been more recently exposed to infection, rendering counselling and treatment services more useful for the con- [*pg 74] tact and potential future partners.³²³ Clearly, "[t]he key issue remains not whether sex and needle-sharing partners of HIV-infected individuals should be informed, but rather how this notification will occur."³²⁴

Public health studies suggest that HIV partner notification programs can be effective in locating and counseling infected contacts of index cases³²⁵ and in reducing STD infection rates,³²⁶ particularly among at-risk groups.³²⁷ These findings often focus on preserving the confidentiality of index cases.³²⁸ For example, a study conducted in the United Kingdom in 1993 found partner notification in the form of a voluntary provider referral program where confidentiality was preserved to be an effective strategy for identifying individuals at risk of becoming infected with HIV and providing them with access to counseling and health care.³²⁹ Twenty-nine new index cases were identified over a seven-year period in a mid-sized community from seventy-nine original index cases, for a seropositivity rate of 31.6%.³³⁰

The seropositivity rate describes the percentage of contacts identified through partner notification in a given program who test positive for HIV for the first time as a result of their notification.³³¹ In general, the higher the seropositivity rate, the greater the efficacy of contact tracing as claimed by public health [*pg 75] authorities.³³² The seropositivity rate in the United Kingdom study, for example, compares favorably to the reported rates of contact tracing programs in Sweden (15%)³³³ and Norway (13%).³³⁴ Comparing seropositivity rates as a measure of efficacy, however, is unsound. Variances in reported seropositivity rates are likely the result of generally incomparable factors, including: (1) the demographics of the population being studied; (2) the culture of the society in which the studies are conducted; (3) the means of operating particular contact tracing programs; (4) the length of time over which the study is conducted; (5) the period in time in which the study is performed; and (6) the sample size of the program studied.³³⁵ This is not to say that reported seropositivity rates of studies on the efficacy of partner notification are of no value. Reported rates can demonstrate the efficacy of different contact procedures within internal studies³³⁶ or in comparison to other public health measures in the same community.³³⁷ Seropositivity rates of contact tracing programs, however, largely are incomparable across populations, methods, and time.

A second fallacy of comparing seropositivity rates as an affirmation of efficacy is that it looks past a primary function of contact tracing, that is, actually notifying and counselling partners. Efficacy studies in Oregon³³⁸ and North Carolina³³⁹ involving syphilis and HIV, respectively, concluded that partner notification is unsuccessful in containing STDs where many potential contacts cannot be notified due to the inability of index cases to identify their numerous sexual and drug partners. In actuality, the ability of contact tracing programs to locate [*pg 76] partners of index cases infected with STDs such as syphilis and HIV that have long latency periods is minimal. Since seropositivity rates are calculated only among those partners who are located, the rates do not reflect the prevalence of disease in a community or the effective ability of contact tracing programs to actually trace all, or even most, partners. Seropositivity rates are thus an inaccurate means by which to judge the efficacy of partner notification.

The confidentiality of index cases who voluntarily participate in contact tracing programs is a critical issue of law and ethics.³⁴⁰ Confidentiality has been an appropriate focal point of modern studies examining partner notification efforts involving HIV-positive individuals; these studies stress the importance of confidentiality in the operation of contact tracing programs. A 1991 Colorado study found a twofold difference in seropositivity rates of newly tested contacts between those HIV-infected index cases who were tested at confidential testing sites versus those who were tested at anonymous testing sites.³⁴¹ In addition, in North Carolina, an internal, comparative study of contact tracing programs randomly assigned index cases to participate in a provider referral program (where confidentiality was guaranteed) and patient referral program (where confidentiality was not).³⁴² Adequate counseling was provided to both groups to encourage the identification and notification of all sexual and needle-sharing partners. Of those who were assigned to provider referral programs, fifty percent of the named partners were located and notified by public health counselors. This compared favorably to the patient referral group where only seven percent of partners were notified, despite the state legal requirement that infected persons notify their partners directly or through a contact tracing programs.³⁴³

While these studies demonstrate the importance of maintaining the confidentiality of index cases in contacting partners, they do not prove that confidentiality actually is maintained. They simply allege that where confidentiality protections are furnished initially, as through provider referral, index cases are more likely to participate in partner notification. As this Article has argued, preserving the confidentiality of index cases through partner notification is a factual and ethical myth. Were index cases advised of this conclusion prior to their participation in a provider referral program, the studies suggest they will not participate voluntarily. While preserving confidentiality is thus an important factor in improving the efficacy of partner notification, studies that reach this conclusion without proving that confidentiality ultimately is preserved are flawed. It is scientifically and ethically inconsistent to advocate the efficacy of [*pg 77] confidential partner notification where confidentiality is assured falsely to voluntary participants.

The degree to which partner notification works to alter favorably the behavior of at-risk individuals also is unclear. A study in South Carolina systematically attempted to demonstrate the effectiveness of partner notification in altering the at-risk behaviors of contacts.³⁴⁴ Partner notification services in a rural South Carolina district included voluntary follow-up interviews with HIV-positive and HIV-negative contacts at six-month intervals, which provided an opportunity to measure behavioral changes in such individuals. Through these interviews, the authors tabulated the number of sexual and needle-sharing partners reported by prior contacts before and after partner notification services. Marked decreases in the number of sexual partners were reported: of those HIV-positive individuals who were re-interviewed at least once, reported partners decreased from an average of 5.6 per case to 1.1 per case after partner notification, an eighty percent decrease. HIV-negative individuals reported on average fifty percent fewer partners after partner notification.³⁴⁵ While these findings are promising, they lack demonstrative proof of decreased at-risk behaviors, and fail to represent the behavioral trends of many partners who chose not to participate in the follow-up interviews.

Noting a lack of evidence regarding the impact of testing and counseling on sexual behaviors, a group of Canadian researchers examined several STD notification studies in 1994 in an attempt to determine the effectiveness of various partner notification models.³⁴⁶ Their findings were, not surprisingly, inconclusive, as "there has been a paucity of well designed studies to evaluate the effec- [*pg 78] tiveness of partner notification strategies."³⁴⁷ The authors noted that, "there is very little upon which to estimate the ultimate benefits and harms of partner notification for HIV infection," and further that, "arguments for and against provider referral for HIV infection tend to be based more on convictions than on data."³⁴⁸ As a result, they recommended that policy decisions regarding partner notification be based on grounds other than efficacy.³⁴⁹

The Canadian report illuminates a major dilemma in examining the efficacy of contact tracing. It is extremely difficult (or nearly impossible) to measure efficacy accurately with so many variables to calculate. While virtually all studies on partner notification efficacy report disparate rates of seropositivity, none suggest that high rates of seropositivity among contacts of HIV index cases is an exclusive determinant of the efficacy of the program. Whether partner notification actually reduces the rate of HIV transmission through behavioral change remains largely speculative.³⁵⁰ As part of a national comprehensive public health strategy, partner notification has not been proven scientifically to reduce the rate of HIV infection among the general population or alter the at-risk behaviors of index cases or partners alike.

B. Economic Perspectives: Cost-Effectiveness and Incentives for Behavior Change

With limited financial resources devoted to public health efforts to combat STDs, including HIV, economic justifications for each part of the comprehensive strategy are essential. Strategic elements that produce demonstrably sound, cost-effective benefits are attractive to those who appropriate funds for such efforts, to the exclusion of other, less economically viable elements.³⁵¹ Yet, economic analysis cited in support of partner notification often is misguided.

"Savings" in the form of medical treatment costs foregone by the alleged prevention of infection of others as a result of partner notification often is cited [*pg 79] as economically justifying such efforts.³⁵² Partner notification programs are analyzed under cost-benefit principles by calculating the cost per new case identified. This figure is deemed important because identifying a new index case through partner notification may mean that future cases of infection will be prevented since index cases are counseled on how to prevent infecting others. In addition, with STDs other than HIV, where curative treatment presently is available, identifying and treating an infected individual effectively can break the chain of transmission. The lower the cost of new case identified, the more economically sound a program is judged to be, principally because the costs of prevention are much lower than the costs of treating people once they have become infected.³⁵³

Comparing the costs of identifying new index cases to the costs of treating future infected persons if index cases go unidentified is senseless from the public health perspective. Not only do such comparisons completely fail to address whether partner notification results in positive behavioral changes among those notified, the comparisons ridiculously suggest that if it takes X dollars to treat an HIV-infected individual, it is cost-effective to spend X - 1 dollars to prevent such infections through partner notification. Public health authorities will not deny that spending resources on efforts to prevent the transmission of STDs has positive cost-benefits, provided an adequate number of infections are prevented.³⁵⁴ With limited resources devoted to public health efforts to control STDs, however, funds must be allocated to efforts that most effectively reduce infection rates. Partner notification is not "the sole strategy for preventing [STD] transmission."³⁵⁵ To the contrary, it is a part of a comprehensive public health strategy that includes testing, screening, and reporting services, largely funded by the [*pg 80] CDC.³⁵⁶ It is important, therefore, to examine the opportunity costs of expending limited resources on partner notification to the exclusion of other strategies that may be more effective. Regardless of cost-benefit analyses, the economic inquiry should be whether X dollars spent on partner notification could be used more efficiently to accomplish public health goals through other strategies such as health education or condom distribution. Unfortunately, comparative economic studies examining partner notification against other strategic public health efforts to control STDs virtually are non-existent.³⁵⁷

There is still a finer economic question to be examined. Economics is a scientific theory used to predict rational human behavior.³⁵⁸ At its core, it is the science of rational choice in an environment of limited resources in relation to human wants.³⁵⁹ Under this view "[t]he task of economics, so defined, is to explore the implications of assuming that man is a rational maximizer of his ends in life, his satisfactions -- what . . . shall [be] call[ed] his 'self-interest.'"³⁶⁰ Individual behavior is rational when it adheres to economic principles of rational choice.³⁶¹ The economic question concerning partner notification is the degree to which it influences individual behavior so as to produce rational decisions that accomplish public health objectives.

In their controversial economic analysis of the AIDS epidemic in which they argue that public health education manipulates and interferes with rational decisionmakers, Tomas J. Philipson and Richard A. Posner conclude that CDC programs (such as contact tracing) that identify disease transmission may increase the spread of disease.³⁶² They envision sexual encounters and relationships under their rational choice model as "trade[s] in the standard economic sense of an activity perceived as mutually beneficial to the persons engaged in it."³⁶³ They argue that people will engage in risky behaviors in an economically rational fashion; a person will participate in sexual acts placing them in danger of HIV infection where the actor's expected utility or subjective welfare is maximized.³⁶⁴ Since individuals will act according to the determination of their own maximum utility, Philipson and Posner argue that the threat of HIV infection will alter in- [*pg 81] dividual risky behavior differently.³⁶⁵ In the face of an incurable disease like HIV/AIDS, those who choose risky sex essentially value it over life.³⁶⁶

Predicting in 1993 that the United States population is approaching an economically efficient level of HIV infection,³⁶⁷ Philipson and Posner have been described as arguing that³⁶⁸

state intervention to fight AIDS is presumptively unwarranted. . . . [They further argue] that mandatory testing for HIV is not worth the cost (in terms of, among other things, privacy) and could well be counterproductive; that the state is probably spending far too much money on research for vaccines, cures, and treatment; and that some money should be spent on targeted education programs that facilitate the operation of people's rational calculations.³⁶⁹

The economists were critical of testing for HIV, arguing that testing actually increases the spread of HIV infection, as uninfected persons are lulled into risky behaviors after testing negative and some infected individuals hide their disease from partners despite testing positive.³⁷⁰ Philipson and Posner argue that to the extent that contact tracing results in additional testing of contacts, partner notification may contribute to the spread of HIV.³⁷¹

Though imaginative, Philipson and Posner's economic assessment of partner notification as contributing to the spread of HIV is neither supported by empirical data nor accepted by public health authorities.³⁷² No study has found an increase in overall HIV infection rates based on increased HIV testing or partner notification.³⁷³ Allowing the HIV epidemic to run its course, as Philipson and Posner suggest, is unfounded and inconsistent with public health practice. Unlike the non-interventionist nature of economic strategies, public health efforts, like partner notification, necessarily are interventionist. Where persons are dying of a preventable disease, public health interventions not only are compelling, but also are practical where early identification may benefit the infected through clinical intervention, particularly in the case of perinatal transmission of HIV.³⁷⁴

While economic justifications for partner notification in the form of cost-benefit analyses are off target, it equally is negligent to suggest that partner notification actually contributes to increased incidences of STD infection. The answer to the true economic question of whether partner notification is more or less effective, in comparison to other elements of a comprehensive public health [*pg 82] strategy, largely is unknown. As a result, supporting partner notification as a national practice on an economic basis alone is illusory.

VI. ALTERNATIVE MODELS FOR PARTNER NOTIFICATION

Despite the moral and legal claims supporting partner notification, impediments to implementing it as a widespread practice abound. In addition to its general failure to protect confidentiality, state operated contact tracing programs are not perceived by infected individuals as voluntary, in light of judicially enforced duties to disclose and warn, but rather as options to self-notification. In this sense, partner notification has a mandatory nature that discourages participation. Lack of participation is one determinant of the essentially unproven efficacy of partner notification efforts. Although partner notification is an accepted practice both ethically and morally, its unproven efficacy reflects the reality that administrating morality is problematic. Cost-benefit analysis projects positive returns on dollars spent on partner notification, but in the economic sense, such programs suffer from a lack of demonstrable evidence that the services provided are the most cost-effective available or actually result in behavioral modification. These facts, coupled with the real world potential of partner notification to cause more harm than good, especially as experienced by STD-positive women and other disadvantaged persons who may suffer mental and physical harm, societal discrimination, and personal economic ruin, challenge the public health conception of partner notification as a valid and useful tool.

Partner notification represents the weak link in the comprehensive public health strategy to prevent STD transmission. Worse yet, it actually may hinder persons from being tested for STDs. Although more studies about the effectiveness of partner notification are necessary given its long-standing use, present evidence suggests that partner notification at best represents an antiquated and largely ineffective public health intervention when implemented nationally. As a result, other public health measures should be examined to determine if they can be utilized more effectively to combat STDs without the drawbacks of partner notification.

A. Partner Notification as Part of Public Health Surveillance and Prevention Strategies

Partner notification cannot be viewed outside the context of a broad range of public health strategies designed to prevent transmission of STDs. Contact tracing, for example, can only be effective if individuals at risk are tested early in the course of their infection and if positive cases are reported to health authorities. If individuals and health officials have no knowledge of their STD status, the issue of partner notification does not arise.

Testing involves the administration of a diagnostic test to determine whether individuals have contracted a particular infectious condition.³⁷⁵ Tests [*pg 83] exist to diagnose virtually every known STD,³⁷⁶ although the effectiveness and costs vary for each STD.³⁷⁷ In the case of HIV, a serologic test for the disease was not developed until 1985;³⁷⁸ later, the CDC would recommend pre- and post-test counseling³⁷⁹ and medical intervention³⁸⁰ as integral parts of HIV testing. Despite opposition from AIDS service organizations, who argued that testing would lead to greater discrimination,³⁸¹ millions of HIV serologic tests have been performed at publicly-funded testing sites,³⁸² including family planning clinics, tuberculosis clinics, drug treatment centers, and primary care clinics.³⁸³ The main purpose of testing for STD infection as part of the comprehensive strategy is to diagnose and treat persons to prevent further transmission.³⁸⁴

Testing, however, like partner notification, is not exclusively a function of public health authorities. Many private health care providers provide testing services for individual patients.³⁸⁵ Still others seek testing for STDs, including HIV, test themselves anonymously using home collection tests.³⁸⁶ Private testing methods allow individuals to learn of their STD status in a confidential setting outside public health clinics, hospitals, managed care organizations, and private physician offices. The primary disadvantage of home testing, from a public health perspective, is the lack of opportunity to provide positive, non-directive counseling concerning the psychological effects of testing, opportunities for treatment, and strategies for behavior change.

While testing services concentrate on diagnosing infection among consenting individuals who request or seek such services, screening programs attempt to determine infection through tests administered to groups at risk of disease or [*pg 84] other sub-populations.³⁸⁷ Screening, which refers to the "systematic application of [diagnostic tests] to specific targeted populations,"³⁸⁸ is implemented to diagnose individuals who are or may be at risk of contracting an STD or who would pose a threat to others. An example is the screening practice of premarital syphilis tests dating back to the 1930s.³⁸⁹ Modern STD screening programs target persons who utilize family planning and adolescent health clinics for STDs like chlamydia.³⁹⁰ Since patients at STD and drug treatment centers may have an elevated risk, these centers are frequently the focus of screening programs.³⁹¹ Mandatory screening programs involving such individuals, however, have been criticized as ineffective at accomplishing the public health objective of modifying at-risk behaviors.³⁹² Individual counseling and therapy on a voluntary basis, therefore, are recommended as a corollary to screening programs.³⁹³

Where testing and screening procedures identify cases of STD infection among individuals, reporting requirements mandate that these cases be relayed to state authorities.³⁹⁴ Reporting, which can be named or non-named and coded to prevent dissemination of private information, exists at all levels of public health.³⁹⁵ Reporting requirements are justified by the need to track the prevalence and incidence of STDs across populations.³⁹⁶ Disease patterns and trends determined through state reporting assist authorities in their efforts to allocate limited resources devoted to preventing STD transmission.³⁹⁷ Information gained through reporting also may assist in measuring the efficacy of public health efforts to control particular STDs. Mass educational campaigns can be targeted to at-risk groups, and named reporting can be a direct link to offering [*pg 85] partner notification services to infected individuals who otherwise have not been located through public testing and screening.³⁹⁸

Although STD reporting requirements differ from state to state, all states require reporting for STDs, including syphilis, gonorrhea, chlamydia, chancroid, and hepatitis B.³⁹⁹ Private providers, however, often fail to comply with reporting requirements.⁴⁰⁰ AIDS reporting is required in all states, and more than half the states have reporting requirements for HIV.⁴⁰¹ This policy decision of states to not require HIV reporting is in part reflective of the vocal concerns of community advocates about infringements on privacy interests resulting from the systematic reporting and collection of confidential information by government.⁴⁰²

While many infected persons can be identified and assisted through testing, screening, and reporting requirements, partner notification is intended to supplement these methods. Partner notification is an accepted component of the comprehensive public health strategy where testing and screening programs identify infected individuals, the names of infected persons are reported to state public health authorities who track the spread of the disease, and contact tracing assists individuals in notifying their partners of the risk of infection. Testing is recommended for all partners notified and the strategic process is begun again. Throughout the process, counseling and education are stressed to modify individual risky behaviors.

As one component of the strategy designed to reach persons at risk of infection who may not otherwise be aware of their exposure or inclined to modify their at-risk behavior, partner notification lacks proof of efficacy and unnecessarily imposes serious infringements on individual rights and interests. Alternative approaches to partner notification can achieve the same public health objectives more efficiently with less intrusion on personal liberty and privacy interests.

B. Utility of Alternative Approaches to Partner Notification

While the national practice of partner notification may be challenged, the need to inform at-risk persons of dangers of which they may be unaware is indisputable. The value of collecting information from infected individuals and notifying those at risk is clear. It is the method of notification that comprehensive analysis of partner notification brings into dispute. As an alternative to di- [*pg 86] rect partner notification, information gained through the channels of partner notification, that is through infected individuals, can be used to focus educational and notification efforts in a confidential manner on persons at risk, including partners.⁴⁰³ While some public health authorities suggest developing focused educational programs for people at high risk for STD infection⁴⁰⁴ or street/community outreach programs⁴⁰⁵ as alternatives to partner notification, others propose using information gained through the traditional practice of partner notification to ascertain the at-risk behaviors of all individuals within a group or sub-population at risk.

Through methods similar to modern business marketing principles, most applications of contact tracing in its present form can be replaced with social network analysis (SNA).⁴⁰⁶ Complex in practice, SNA attempts to measure the way in which people relate to each other by examining determinants of their social structure, or network. It transforms information obtained from individuals through interviews, surveys, or epidemiologic studies into data about their interaction within networks.⁴⁰⁷ Complementary approaches of network ascertainment and ethnography are combined to describe "a social process, such as the transmission of disease, and to contribute to disease control and program evaluation."⁴⁰⁸ Instead of concentrating on information about partners, as traditional contact tracing does, SNA attempts to identify persons in an infected individual's social setting and offer epidemiologic treatment (testing and medical evaluations) to STD network members discovered through ethnographic analysis.⁴⁰⁹ Further analysis allows authorities to target public health efforts at those who are calculated to be at the greatest risk of infection.⁴¹⁰

Some of the benefits of SNA over traditional contact tracing include: the ability of public health authorities to focus efforts on persons at greatest risk of STD infection; the development of enhanced knowledge about existing transmission rates within defined areas and sub-populations that "brings disease control closer to the starting line;"⁴¹¹ the advantage of not being required to inquire specifically about partners of infected persons; the provision of important information to at-risk individuals without breaching the confidentiality of sources; the [*pg 87] ability to identify and notify persons at risk who are not necessarily former or existing sexual or IDU partners of infected persons, but may be in the future; and the ability to develop more detailed information about at-risk behaviors to allow more effective behavioral interventions.⁴¹²

There are disadvantages to SNA as well. First, the approach is dependent upon information gathering, and thus is labor intensive, expensive, and time-consuming.⁴¹³ This drawback also is true of provider referral, which is perhaps the most efficacious form of contact tracing. Second, if the information is incomplete or incorrect, network behavioral calculations may be off target. Third, SNA requires technologically-advanced statistical calculations by knowledgeable experts to which smaller public health districts may lack adequate access. New statistical methods that simplify the deduction of individual behavior from aggregate data without affecting accuracy, however, may prove valuable in epidemiological applications like SNA.⁴¹⁴ Fourth, network techniques also may be incompatable for differing STDs and difficult to replicate in all communities.⁴¹⁵ Fifth, since SNA does not undertake to notify partners directly, participation by infected persons does not satisfy their legal duty to disclose; HCWs cannot refer infected patients to SNA programs to fulfill their duty to warn. Finally, like contact tracing, the efficacy of SNAs in the field of epidemiology remains unclear.⁴¹⁶

Innovative strategies like SNA, nonetheless, demonstrate new guidance for public health efforts. In weighing the benefits of SNA and the drawbacks of contact tracing, public health authorities should consider SNA in combination with contact tracing on a reduced scale, limited to those environments in which contact tracing is demonstrated to be more effective.⁴¹⁷

VII. CONCLUSION

From its origins in the practice of reglementation to its development during the syphilis epidemic to its modern application in the HIV/AIDS epidemic, partner notification has been motivated by the moral imperative to notify and protect persons who are unaware of their risk of STD exposure. Few people question the underlying morality of open and honest information in relation to a "hidden epidemic." The consequences of partner notification are complex, however, and are not uniformly beneficial to infected persons, their partners, and the community. Even though the practice is defensible on normative grounds, partner notification has demonstrable flaws. Partner notification presents a cost to individuals in loss of privacy and in discrimination. For women, it can result [*pg 88] in abandonment, neglect, and abuse. In addition, research data do not demonstrate convincingly the effectiveness and economic benefits of partner notification. For these reasons, alternative strategies like social network analysis should be considered to supplement or replace partner notification. Social network analyses, involving focused education and notification of sub-populations at high risk, may change risk behaviors without infringing civil liberties.

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