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

  


HIV Testing and Confidentiality: Final Report

Prepared by Ralf Jürgens

© Canadian HIV/AIDS Legal Network & Canadian AIDS Society

ISBN 1-896735-16-9

REPORTING

As Zeegers Paget has said,

[t]he surveillance of an infectious disease has been defined as the continuous scrutiny of all aspects of its spread. ... The reporting of an infectious disease is often seen as a first step in controlling its further spread. Reporting allows determination of the presence of the disease in the population.1109

In relation to AIDS, the Canadian Bar Association-Ontario has indicated three aims of reporting, namely to permit education and counselling to be directed to those groups where HIV infection or AIDS is more frequent, to facilitate the tracing of contacts, and to gather epidemiological data on AIDS and HIV infection.1110

In the debate on reporting, two questions are prominent: the first concerns the scope of reporting, and the second the type of reporting to be used.1111 The scope of reporting concerns what it is that has to be reported: AIDS, HIV infection and/or other symptoms of HIV/AIDS. Some jurisdictions require reporting only of AIDS, while others require reporting of AIDS and HIV and some require reporting of other symptoms of HIV/AIDS.

The second question in the debate regarding the type of reporting concerns whether it is nominal or non-nominal. In nominal reporting, the name or other identifying information of the patient is reported to public health authorities. In non-nominal reporting, the name or other identifying data is not reported.

In Canada, AIDS was treated as notifiable in British Columbia beginning in 1983 under a provincial regulation requiring physicians to report a communicable disease "which becomes epidemic or shows unusual features."1112 AIDS and sometimes HIV was subsequently made notifiable or reportable by legislative amendment in all provinces and territories. Some provinces and territories require nominal reporting of AIDS and sometimes even HIV, while in the others reporting is non-nominal. Recently, some provinces have revised their HIV reporting requirements or, like Québec, are in the process of doing so. In the United States, debate about HIV reporting has been raging for the last twelve months. While there is consensus that there is a need for accurate monitoring of HIV infection and that AIDS surveillance "can no longer provide as timely, complete, representative, and accurate a reflection of the epidemic as we need,"1113 many oppose proposals for nominal reporting of HIV, fearing that it inhibits rather than supports public health goals such as protecting the confidentiality of those living with HIV and encouraging people to seek HIV testing.

This chapter first reviews the recommendations made by organizations in Canada – and, to a lesser extent, internationally – since 1986 regarding reporting of HIV and AIDS (History). The chapter then briefly examines the current situation in Canada, pointing out that with respect to reporting there are wide divergencies in legislation and practice between and within Canadian provinces and territories. Internationally, the situation is similar, with wide divergencies in legislation and practice between and sometimes within different countries (Current Situation). The chapter then examines how reporting of HIV and AIDS should be undertaken in Canada (Assessment). It supports reporting of HIV cases, but only if such reporting is non-nominal, using unique identifiers or coded identifiers that ensure privacy and confidentiality of the individual (Conclusions and Recommendations).

The chapter does not address questions raised by setting up a national system for HIV surveillance in Canada.1114 Such questions are beyond the scope of this Report.

History

Canada

Most people and organizations in Canada that have addressed the issue of reporting have recommended that both HIV and AIDS be reportable.1115 For example, the Royal Society of Canada stated that, "whether the purpose of reporting is surveillance for epidemiological purposes or reduction of the spread of the disease, if reporting is justified, it would seem preferable to include both HIV infection and AIDS."1116 Only rarely has it been questioned whether HIV-antibody positivity should be reportable at all.1117

Individuals and organizations have, however, stressed that reporting should be non-nominal. The Canadian Bar Association –Ontario suggested that the uses of personal identifiers such as the patient’s initials, present address, and exact date of birth should be omitted from the reporting procedures and from the notification forms sent to the medical officers of health. According to the Association’s report, personal identifiers are not required to serve the reporting objective of collecting epidemiological data. In addition, in light of the report’s recommendation that it be the physician, and not the medical officer of health, who is initially responsible for partner notification, "it is unnecessary for the medical officer of health to obtain this personal identifying information for contact tracing purposes."1118 Similarly, the Royal Society of Canada recommended that reporting laws be amended to provide that the reporting of HIV seropositivity and AIDS not identify the person,1119 and the Information and Privacy Commissioner/Ontario suggested that "any obligation imposed by legislation to report nominal HIV/AIDS-related personal information ... be removed."1120 In particular, the Royal Society held that reporting by number, age, sex and municipality provides sufficient information for epidemiological purposes:

Personal identification is not required for an incurable disease for which isolation or segregation is not recommended as a public health measure. ... We do not support ... nominal reporting.1121

Hamblin and Somerville questioned whether many of the existing HIV infection and AIDS case-reporting requirements would be able to withstand a challenge under the Charter of Rights and Freedoms.1122 With regard to the epidemiological objective of existing systems of surveillance of HIV and AIDS, they agreed that the need is for consistent and accurate data in a form that enables the spread of HIV to be monitored, but pointed out that personal identifying information is not relevant for epidemiological purposes.1123 Therefore, they concluded that "compulsory case reporting requirements in Canada are not designed to achieve the epidemiological objective in the most effective and least harmful way."1124 With regard to the objective of facilitating public health measures such as partner notification, the authors pointed out that "the majority of reporting provisions in Canada go further than is needed for contact tracing to take place."1125 The authors concluded by pointing out that "the diversity to be found in surveillance of HIV infection and AIDS in Canada has resulted in a lack of coherence in the way that information about these conditions is collected." In their view, inconsistencies among approaches to case reporting in the different Canadian jurisdictions present real obstacles to effective surveillance of HIV and AIDS.1126 To overcome those obstacles, the Canadian Public Health Association recommended that Health Canada, in collaboration with the provincial and territorial ministries of health, compare and report on the experiences of provinces with mandatory HIV reporting and on those without mandatory reporting; develop a standard, non-duplicative reporting mechanism for HIV and AIDS across Canada; and develop a protocol for reporting to the province or territory and to Health Canada.1127

Finally, in 1997, at its Annual General Meeting, the Canadian Public Health Association called on the ministers of health of British Columbia, Alberta, and Québec "to make HIV reportable in their jurisdictions and provide such data to Health Canada so that the full extent of and changes in the HIV epidemics in Canada can be determined and monitored."1128

International Developments

Internationally, as in Canada, reporting of AIDS cases has until recently formed the cornerstone of efforts to monitor and characterize the epidemic of HIV infection. While AIDS surveillance was, and still is, broadly accepted, requirements of HIV reporting have long been controversial. In particular, it remains controversial whether cases of HIV should be reported by name or whether HIV surveillance by unique identifier or other non-name based surveillance systems should be adopted.

In the United States,

AIDS first emerged in the early 1980s as a health crisis among gay men, who began experiencing an onset of severe and unexplained health problems that quickly turned fatal. At the time there was no medical understanding of the emerging epidemic, and there was widespread societal fear about possible contagion. AIDS became a marker for gay men, and since many in the population held strong biases against gay people, a social stigma attached to AIDS that set the syndrome apart from other contagious diseases. Gay men with AIDS were fired from their jobs, lost their health insurance and their homes, were turned away by health care providers, and were ostracized by their families, either because of their mysterious health condition, their sexual orientation, or both.1129

Surveillance of AIDS cases, including reporting the names of people diagnosed with AIDS to public health authorities, began almost immediately and "with little fanfare."1130 There were several reasons for this:

First, name reporting was a public health response which had been used with some other sexually transmitted diseases. Second, individuals who were diagnosed with AIDS were already in the late stages of what we now know to be HIV disease, and were for the most part already participating in the health care system. Thus in a real sense they had already been "identified" as persons with AIDS. And finally, although an AIDS diagnosis and public dissemination of that information often triggered a hostile societal response, the harsh reality was that persons diagnosed with AIDS usually died quickly, and the struggle for survival overwhelmed any attempt of leading a "normal life."1131

HIV was not discovered until 1983, and HIV testing became available only in the mid 1980s. At that time, surveillance of cases of HIV infection, as opposed to AIDS diagnosis, was opposed by advocacy groups and by public health authorities. There were several reasons for this opposition:

First, because AIDS initially appeared in populations which have traditionally been discriminated against ... and because of the stigma which quickly surrounded the disease, there was concern about reporting HIV cases and suspicion about what would be done with the information collected. This concern was justified, in light of the fact that few confidentiality protections existed in law, and that proposed policies were often driven by fear and misunderstanding. Historically, proposals for HIV surveillance almost always called for mandatory name reporting.

Second, there was no cure or even effective treatment to offer to those infected with HIV and no medical way to make an infected person uninfectious, reasons given under traditional public health practice for reporting cases of a disease...

Finally, there was fear that reporting HIV cases would drive people away from testing and the health care system generally – especially those who might be likely to test positive for HIV – and therefore would undermine public health efforts. In short, the harm that could potentially have come from HIV surveillance outweighed the benefits that it could provide.1132

 


Thus, the first requirement for HIV reporting, in Colorado, and the early public health proposals for HIV surveillance in the mid 1980s "ignited a firestorm of community protest."1133

In recent years, however, in the United States as elsewhere in the developed world, a number of factors have shifted the focus of epidemiological surveillance to the "front end" of the AIDS epidemic, HIV infection. As medical treatments prolong the lives of many people with HIV and significantly delay the amount of lapsed time from infection to AIDS diagnosis, surveillance of AIDS cases tells us less and less about how HIV infection is developing and spreading. For the United States, Gostin et al have argued that "[w]e are at a defining moment in the epidemic of HIV infection and AIDS," and that "[u]nless we revise our surveillance system, health authorities will not have reliable information about the prevalence, incidence, and future directions of HIV infection, the kinds of behavior that currently increase the risk of HIV transmission, or the heightened impact on specific subpopulations, such as racial and ethnic minorities and women."1134 The authors have therefore proposed that all states in the US require HIV case reporting. This proposal has received wide support, including from those who have traditionally opposed HIV case reporting, such as the American Civil Liberties Union and the New York-based group Gay Men’s Health Crisis, which in January 1998 called for a new system for tracking HIV infection in New York State, saying "that the old hospital-based AIDS reporting system is obsolete."1135 However, heated debate continues about whether reporting should be nominal or non-nominal. In particular, the debate centres around whether HIV case surveillance through the use of non-name unique identifiers, such as undertaken in some states, is effective.1136

In October 1997, the National Association of Persons with HIV/AIDS (NAPWA) adopted a policy position paper on the monitoring of the HIV epidemic. The following 14 criteria define NAPWA’s position "on the responsible and ethical approach to monitoring the HIV/AIDS epidemic in the United States":1137

1. Under no circumstance does NAPWA support HIV named reporting, the CDC’s promotion of a national standard in support of HIV named reporting or the creation of a federal name-based registry of people living with HIV/AIDS. The CDC should in no way encourage or require states to do HIV named reporting.

2. NAPWA guardedly supports the expansion of our national HIV/AIDS surveillance system to include HIV infection case reporting; however, only using unique or coded identifiers that insure privacy and confidentiality of the individual.

3. The CDC must aggressively promote, expand and improve anonymous HIV testing in the United States. The availability of readily accessible anonymous testing is a necessary condition/prerequisite for any maintenance and/or expansion of HIV surveillance in the United States. CDC must mandate readily accessible anonymous testing in all HIV Prevention Cooperative Agreement jurisdictions as a condition of establishing HIV surveillance tools nationally.

4. CDC-funded research has shown that certain individuals and/or communities will only use anonymous testing sites. Therefore, access to primary care (after testing positive) is predicated upon the availability of anonymous testing.

5. CDC’s HIV/AIDS surveillance’s primary goal is to collect useful data in a timely fashion to provide an accurate estimate of the prevalence of HIV/AIDS in the United States. Accordingly, HIV/AIDS surveillance has to provide reliable data. As such, while it is a goal of anonymous and confidential counseling and testing to link individuals into services, this is not necessarily either a goal or an outcome of surveillance.

6. The applied uses of reliable, accurate and timely surveillance data include informing: resource allocation; health planning; and evaluation of both programmatic as well as system-wide activities (i.e. access to care, survival/death rates, seroincidence rates, etc.).

7. As a guiding principle, unless a name is uniquely essential for the protection and promotion of an individual’s health and well-being or a community’s health and well-being, the name of the person whose information is being reported to the state or local health department should not be taken.

8. Surveillance is an adaptive science. As such, surveillance systems should be constantly re-evaluated to determine if the goal of applying surveillance data to meaningful education, programs, planning and resource allocation is happening. If not, these systems should be discontinued.

9. Surveillance systems consist of several different types of activities in addition to case counting (number of individuals living or deceased who have said disease): sentinel studies; incidence and prevalence studies (density of disease and breadth of disease); and even behavioral (risk-taking) surveillance. The more varied the surveillance system, the more relevant the data sets that result.

10. Decisions regarding what type of HIV/AIDS surveillance to implement in a given jurisdiction are best made by each jurisdiction based on resources, community acceptance, confidentiality/privacy protections, the severity of the epidemic, and other local considerations.

11. Data from HIV case reporting must be appropriately disseminated to the community planning bodies within jurisdictions for use in both prevention and care planning.

12. Categorical funding for HIV/AIDS surveillance must be maintained and augmented. However, resources for HIV/AIDS surveillance must not come at the expense of resources for HIV-related research, care and prevention (both primary and secondary) programs.

13. National HIV/AIDS public health policy should reinforce that the data collected under this system must remain decoupled from partner notification and contact tracing processes. These processes’ relationship to surveillance must be made only as a component of and only with the explicit concurrence from the jurisdiction’s HIV Prevention Community Planning group.

14. Federal law must establish an individual’s enforceable right to privacy with respect to individually identifiable health information, and must protect each person from discrimination based on real or perceived health and/or genetic status. Such laws must include strong and enforceable repercussions for those individuals and systems that breach an individual’s confidentiality and/or privacy.1138

In Australia, the Legal Working Party of the Intergovernmental Committee on AIDS recommended that uniform notification requirements be adopted throughout the country, requiring coded reporting of confirmed HIV positive test results by laboratories, and of clinical AIDS diagnosis by doctors.1139

Internationally, the Guidelines on HIV/AIDS and Human Rights state that "[p]ublic health legislation should ensure that HIV and AIDS cases reported to public health authorities for epidemiological purposes are subject to strict rules of data protection and confidentiality."1140

Current Situation

Canada

In Canada, matters of public health typically fall under provincial jurisdiction as a "local or private" matter pursuant to s 92(16) of the Constitution Act, 1867.1141 There are therefore wide divergences in legislation and practice between and within the provinces and territories.

Reporting of AIDS

In all Canadian provinces and territories, either public health legislation or regulations passed pursuant to such legislation, have been amended to make cases of AIDS notifiable to public health authorities.1142

Nominal/Non-Nominal Reporting

Newfoundland, Nova Scotia, New Brunswick, Ontario and Manitoba require nominal reporting of AIDS.

Saskatchewan requires nominal reporting of AIDS to the level of the Medical Health Officer and non-nominal reporting to the CDC, Saskatchewan Health.1143

In British Columbia, reporting may take place using non-nominal records, but some clinicians do submit the full name of the patient.1144

In Prince Edward Island, reporting is done "in such manner as the Chief Health Officer may direct."1145 In February 1991, "[n]otification for AIDS and ‘HIV antibodies’ ... became dependent ... upon risk assessment."1146 The reporting physician may choose to report nominally "where there is reason to believe that someone who tests HIV+ will not cooperate in contact tracing or that the person must be reported by name in order to protect the health of the public."

Québec, Alberta, and Yukon do not require nominal reporting of AIDS.

Reporting of HIV Seropositivity

Cases of HIV seropositivity must be reported in all provinces and territories with the exception of Québec, British Columbia, and Yukon. In Alberta, HIV became a notifiable disease on 1 May 1998. In Québec, an Ad Hoc Committee was struck in March 1998 with the mandate to "review HIV infection surveillance strategies in Québec, including obligatory reporting of HIV, and to propose recommendations for putting into place or improving the means of obtaining the information necessary to monitor the epidemic and to better help those living with HIV."1147 The Committee released a draft report in August 1998 recommending that HIV become non-nominally reportable in the province.1148 In British Columbia, HIV is not reportable by physicians, but non-nominal collection of data does occur at the level of the testing laboratories. As of August 1998, it was not planned to make any changes to the BC reporting system.1149  In 2001, however, it was expected that British Columbia would make HIV reportable.

In Yukon, all HIV-antibody testing is carried out under the direction of the Territory’s Communicable Disease Officer, who keeps a record of all persons who test positive.

Nominal/Non-Nominal Reporting

Newfoundland, New Brunswick, Ontario, and the Northwest Territories require nominal reporting of HIV infection. However, in Ontario, physicians who provide professional services to a patient in certain specified clinics have been exempted from reporting the patient’s name and address. In Prince Edward Island, reporting is done "in such manner as the Chief Health Officer may direct."1150 According to correspondence received from Dr Sweet, Chief Medical Officer of Prince Edward Island, this

allows 80% of reporting to be non-nominal. However, in the other 20% of cases nominal reporting is required in order to ensure that adequate partner notification or contact tracing/testing can be carried out.1151

In Alberta, reporting could be nominal or non-nominal. In the other provinces, reporting of HIV is non-nominal.

 


Duty to Report

The classes of people on whom reporting of HIV infection and/or AIDS is imposed varies from province to province. In Québec, only physicians and directors of laboratories have a duty to report. In Manitoba, physicians and laboratory operators have a duty to report. In Newfoundland, Nova Scotia, Ontario, and Alberta a duty to report is imposed on additional classes of people, typically teachers (Alberta and Newfoundland), school principals (Ontario), persons in charge of certain specified institutions, such as, eg, hospitals, prisons, or boarding schools (Alberta, Newfoundland, Nova Scotia, and Ontario), and hotel-keepers and keepers of boarding houses (Newfoundland).

International Developments

As in Canada, legislation and practice concerning reporting varies greatly from one jurisdiction to another. In Australia, the mandatory reporting of HIV and AIDS to the Health Department is required by public health legislation in all jurisdictions.1152 In addition to reporting HIV and AIDS to State Health Departments, HIV laboratories and sexual health clinics also report new cases of HIV infection and AIDS and deaths from AIDS to the National Centre in HIV Epidemiology and Clinical Research located at St Vincent’s Hospital, Sydney. Reporting of both HIV and AIDS is usually coded. For example, in New South Wales and Victoria, medical practitioners are required to report diagnosed cases of AIDS to the Health Department using a name code constructed from the first two letters of the patient’s surname and given name. In some states, exceptions from coded reporting are possible and nominal reporting may be undertaken in order to protect the public against an "outbreak" of HIV.1153 Additional demographic data are also collected. The mode of infection of a patient diagnosed with HIV or AIDS is notifiable by the laboratory or doctor concerned in accordance with reporting forms prescribed in all States and Territories. Ethnic origin is notifiable in Queensland, racial origin is notifiable in South Australia, one’s "language spoken at home" and country of birth are notifiable in Tasmania, and aboriginality is notifiable in New South Wales, Queensland, Western Australia, and Tasmania.1154

In the United States, all states require that AIDS cases be reported by name. An increasing number of states (30 as of July 1998) also mandate nominal HIV reporting, while some states rely on a coded unique identifier to track HIV cases and a small number of states has not yet required reporting of HIV cases. The issue gained a lot of attention in 1998 because a number of states enacted reporting-related legislation, most notably New York State, where legislation to implement name-based reporting was enacted in July. In Texas, the state was considering shifting from a unique-identifier system to a name-based reporting system,1155 while California adopted legislation requiring HIV reporting using coded identifiers in August.1156 Federal guidelines for HIV case surveillance, expected to be released in early 1998, have been delayed and had not been issued at the time of writing. However, it has been reported that the guidelines will not recommend that states rely on names to track the epidemic and that they will focus on performance standards for conducting surveillance, rather than urging states to record HIV infection using the person’s name.1157

In Europe as elsewhere, AIDS case reporting has long been the principal means for monitoring the HIV epidemic. More recently, however, HIV surveillance strategies have been the focus of attention. Information from a study conducted in September 1997 to explore the feasibility of setting up an HIV case-reporting system at the European level showed that

HIV case reporting systems exist since the late 1980s in most European countries. Their organization is different according to the country. Laboratories and clinicians are frequently both involved as a source of reporting to obtain both a high reporting rate and sufficient clinical and epidemiological information. A minority of countries have adopted nominative reporting, which allows precise identification of cases but may increase the risk of discrimination if confidentiality is breached. In most other countries, reporting through an identifying code still allows the elimination of most duplicate reports and the linkage between HIV and AIDS reporting.1158

The study reports that changes in HIV case reporting are planned in several European countries1159 and that a preliminary consensus was reached in February 1998 to set up a European HIV case-report database to complement the existing European databases on AIDS cases and on HIV prevalence studies.1160

Assessment

Public health authorities must substantiate the need for a named identifier when collecting information. If they could achieve the public health goal as well, or better without personal identifiers, the collection of non-identifiable or aggregate data is preferable. These data collection principles recognize that government authority to acquire sensitive personal information ought to be justified by substantial public health goals that cannot be achieved by means that are less invasive of individual privacy.1161

As shown above, all Canadian provinces and territories require reporting of cases of AIDS to public health authorities, and most, but not all, also require reporting of cases of HIV seropositivity. Some provinces require nominal reporting, while others don’t. The wide divergencies in legislation and practice between the provinces and territories has made surveillance of the epidemic in Canada more difficult, leading to calls for development of a standard, non-duplicative reporting mechanism for HIV and AIDS across Canada. Because matters of public health fall under provincial jurisdiction, development of such a reporting mechanism would require that all provinces and territories agree on one reporting mechanism and amend their public health acts accordingly. It seems unlikely that, more than 15 years into the HIV and AIDS epidemic, a consensus will be reached across Canada on how to best achieve the goals of reporting.

However, it does seem that provinces that have thus far not required the reporting of cases of HIV seropositivity are moving toward changing their laws and regulations to require such reporting. Indeed, as reported above, since the publication of the Discussion Paper in March 1997, Alberta has changed its legislation to require reporting of HIV and in Québec an Ad Hoc Committee has recommended that HIV become reportable. This may soon lead to a situation where all provinces and territories will require reporting of cases of both AIDS and HIV seropositivity. As long as reporting is non-nominal, this is not a cause for concern. To achieve the epidemiological objective of reporting, there are good reasons at this point in the epidemic to require reporting of cases of HIV seropositivity. HIV surveillance can allow us to develop a more accurate picture of the current epidemic and craft a more finely-tuned response. As the US Centers for Disease Control and Prevention have stated, HIV surveillance can "provide a more timely measure of emerging patterns of HIV transmission, a more complete estimate of the number of persons with HIV infection and disease, and a better mechanism to evaluate access to HIV testing and medical and prevention services than AIDS surveillance alone.1162

However, neither the epidemiological objective of reporting nor the objective of facilitating public health measures such as partner notification, require nominal reporting. With regard to the epidemiological objective, the need is for consistent and accurate data in a form that enables the spread of HIV to be monitored, including demographic information about the age, sex, and geographic location of an HIV-positive person, information about how that person is thought to have been exposed to HIV and about the person’s previous testing history, in order to prevent duplication of reporting. Personal identifying information is not relevant.

With regard to the objective of facilitating public health measures such as partner notification, personal identifying information is also not necessary: people can identify partners without identifying themselves. As has been said, "the name of the person testing HIV positive ... is not what is important in partner notification, rather, it is the names of the sexual or needle-sharing partners of the source patient."1163

Therefore, it can be concluded that nominal reporting requirements are not designed to achieve their objectives in the most effective and least harmful way. The desire for HIV surveillance can be accommodated without nominal reporting.

In addition, Nash Colfax and Bindham have recently pointed out that

[a]lthough reporting individuals by name may appear to be a logical control measure for most diseases, there is little evidence as to whether reporting actually improves individual or public health outcomes. Despite nearly a century of requirements to report patients with sexually transmitted diseases by name, the impact of these policies has not been systematically evaluated. The impact of reporting AIDS cases by name has also never been quantified; there is no evidence that name reporting has helped significant numbers of individuals gain entry into care.1164

The authors continued by saying that there are two main risks to reporting people by name: the information could be misused to harm infected people, and fear of being reported may deter infected individuals from being tested, potentially delaying their receipt of appropriate counselling and medical care. Talking about the situation in the United States, the authors referred to concerns that

HIV-related legislation might allow legal disclosure of HIV test results, superseding efforts to keep name reporting information restricted and confidential. For example, in Illinois, an amendment to the Sexually Transmissible Disease Control Act gave the state health department, under certain conditions, authority to reveal previously confidential information about HIV-positive health-care workers.1165

In addition, the authors pointed to the 1996 breach of the Florida Health Department’s AIDS computer database, which resulted in a list of names of 4000 people with AIDS being leaked to the media, reinforcing the fact that confidential name reporting systems are not foolproof.1166 Even if public health departments have very good records of keeping confidential the information they have collected, concern about the potential for such transgressions may be sufficient to reduce or delay HIV testing. In many ways, confidentiality concerns regarding an HIV surveillance system are even greater than those for an AIDS surveillance system, due to "the fact that many persons with HIV infection are not ill and/or receiving health care, that HIV surveillance reports must be maintained for longer periods of time ... and that the negative consequences of unauthorized disclosure of HIV infection status are potentially greater than for AIDS."1167 When asked, people have generally claimed that reporting of HIV test results by name would deter them from being tested.1168 A study published in 1997 found that 20 percent of people with high-risk behaviours surveyed for HIV listed the fear of name reporting as a reason for avoiding HIV testing.1169 However, other studies have shown no clear association between reporting policies and testing behaviour.1170 Most recently, a US Centers for Disease Control and Prevention study indicated that HIV reporting by name did not significantly affect the level of HIV testing in publicly funded anonymous and confidential test sites. The study showed no significant declines in testing following the implementation of HIV reporting. However, to help ensure that reporting policies do not deter even a small number of people from seeking testing, CDC recommended in the study that states make anonymous testing available.1171 This is consistent with the recommendation in the report by the AIDS Action Committee of Massachusetts and the AIDS Action Council of Washington DC. The two organizations emphasized that states that still choose to use name reporting as an HIV surveillance tool despite the many concerns raised

should, at a minimum, maintain the option of anonymous testing for those individuals who will not test for HIV without assurance of their anonymity. Such states also must enact privacy protections which provide for penalties severe enough to underscore the importance of confidentiality and deter breaches."1172

However, in many ways, this would simply shift the deterrence problem away from testing and instead deter people from entering treatment. In a 1996 survey of individuals testing for HIV in Los Angeles County, over 20 percent of survey participants said that they would delay treatment if their doctor were required to report their name to public health authorities.1173

Conclusions and Recommendations

There may come a time "when HIV is so unremarkable a part of our landscape, and care for it so routinely available to those who need it, that no one will reasonably fear being identified as a person with HIV." But we are "nowhere close to that time yet." On the contrary, "the best evidence we have suggests that those who most need HIV testing are afraid of name reporting because they fear discrimination. Moreover, we know those fears are not groundless."1174 In addition, neither the epidemiological objective of reporting, nor the objective of facilitating public health measures such as partner notification, require nominal reporting. Therefore, provinces and territories that currently require nominal reporting of HIV seropositivity and/or AIDS should review their reporting requirements by forming working groups including people with HIV/AIDS, test providers, ethicists, public health professionals, technical experts and others, and develop a system that collects only the information necessary, using unique or coded identifiers that ensure privacy and confidentiality of the individual.

13. Reporting of both HIV and AIDS should be non-nominal: nominal reporting is not warranted either for surveillance or for partner notification purposes. Provinces and territories that currently require nominal reporting should review their reporting requirements by forming working groups including people with HIV/AIDS, test providers, ethicists, public health professionals, technical experts and others, and develop a system that collects only the information necessary, using unique or coded identifiers that ensure privacy and confidentiality of the individual.

 


ENDNOTES

1109 Zeegers Paget, supra, note 175 at 109, with reference to AS Benenson (ed). Control of Communicable Diseases in Man: An Official Report of the American Public Health Association. 14th edition. Washington, DC: American Public Health Association, 1985.

1110 Zeegers Paget, supra, note 175 at 13, with reference to CBA-Ontario, supra, note 7.

1111 Ibid at 109.

1112 Commission of Inquiry on the Blood System in Canada, volume 2, supra, note 4 at 575.

1113 AIDS Action Committee of Massachusetts and AIDS Action Council of Washington DC. Creating an Effective Public Health Response to the Changing Epidemic: Moving to HIV Surveillance by Unique Identifier and Other Non-Name Based Surveillance Systems. Boston & Washington DC: AIDS Action Committee and AIDS Action Council, October 1997, at 4.

1114 See JD Farley et al. HIV/AIDS Surveillance in Canada, Change in Strategy. Presentation at the Seventh Annual Canadian Conference on HIV/AIDS Research, Québec, abstract 241P.

1115 For a detailed review, see Jürgens & Palles, supra, note 2 at 229-251.

1116 MacKinnon, Cottrelle & Krever, supra, note 195 at 358.

1117 Glenn et al, supra, note 1027 at 4.

1118 CBA–Ontario, supra, note 7 at 50.

1119 MacKinnon, Cottrelle & Krever, supra, note 195 at 359; see also supra, note 10, Background Papers at 6.

1120 Information and Privacy Commissioner/Ontario, supra, note 1018 at 4.

1121 Royal Society. Summary Report, supra, note 10 at 11.

1122 Hamblin & Somerville, supra, note 346.

1123 Ibid at 236.

1124 Ibid.

1125 Ibid at 237.

1126 Ibid at 245.

1127 CPHA, supra, note 15 at 17.

1128 Canadian Public Health Association. 1997 Resolutions and Motions. Ottawa: The Association, 1997 (resolution no 8).

1129 Supra, note 85.

1130 Ibid.

1131 Ibid.

1132 AIDS Action Committee and AIDS Action Council, supra, note 1113 at 1-2.

1133 LO Gostin, JW Ward, AC Baker. National HIV Case Reporting for the United States. A Defining Moment in the History of the Epidemic. The New England Journal of Medicine 1997; 337(16): 1162-1166 at 1162, with reference to R Bayer. Private Acts, Social Consequences: AIDS and the Politics of Public Health. New York: Free Press, 1989.

1134 Gostin, Ward & Baker, supra, note 1133 at 1163.

1135 Gay Men’s Health Crisis. Gay Men’s Health Crisis Calls for Monitoring of HIV Infections. New York, NY: Gay Men’s Health Crisis News Release, 13 January 1998.

1136 See, eg, American Civil Liberties Union. The Maryland Lesson. Conducting Effective HIV Surveillance with Unique Identifiers. The American Civil Liberties Union, December 1997 (available at www.aclu.org), arguing that "in light of Maryland’s increasingly successful experiment with Unique Identifiers, UI’s must be considered as a viable alternative to names-based reporting as we expand HIV surveillance in response to the changing nature of the epidemic"; Evaluation of HIV Case Surveillance Through the Use of Non-Name Unique Identifiers – Maryland and Texas, 1994-1996. Morbidity and Mortality Weekly Review 1998; 46(52&53): 1254-1272; L Solomon. Experience [with the Maryland HIV reporting system]. NASTAD HIV Prevention Community Planning Bulletin, April 1998; Texas Department of Health. Recommendations on HIV Infection Reporting. Austin: The Department, Bureau of HIV and STD Prevention, 21 March 1998.

1137 National Association of Persons with HIV/AIDS. NAPWA Position Statement on HIV Surveillance, 3 October 1997.

1138 Ibid.

1139 Magnusson, supra, note 371 at 348, with reference to Intergovernmental Committee on AIDS, Legal Working Party. Final Report. The Committee, November 1992, Recommendation 2.1.

1140 HIV/AIDS and Human Rights – International Guidelines, supra, note 162 at 13, para 28(e).

1141 See generally Schneider v R, [1982] 2 SCR 112.

1142 The following survey was compiled by asking selected individuals in the health ministry of each province and territory to update information contained in previously published lists, such as those in MacKinnon, Cottrelle & Krever, supra, note 195 at 359; J Hamblin et al. Responding to HIV/AIDS in Canada. Toronto: Carswell, 1990, and updates by R Jürgens, N Gilmore, M Somerville; Hamblin & Somerville, supra, note 346; The Privacy Commissioner of Canada, supra, note 1032.

1143 Communication with Nida Wurtz, AIDS Coordinator (Saskatchewan), on 28 January 1997.

1144 Communication with Dr David Patrick, Associate Director of HIV/AIDS, British Columbia Centre for Disease Control, on 29 January 1997.

1145 EC 409/87, s 17.

1146 Correspondence received from Dr Lamont Sweet, Chief Health Officer, Department of Health and Social Services, Charlottetown, Prince Edward Island, dated 14 May 1991.

1147 Rapport du comité ad hoc sur la surveillance épidémiologique de l’infection par le VIH au Québec. Déposé à la Direction générale de la santé publique, Ministère de la Santé et des Services sociaux. Draft, Montréal, August 1998, at 5.

1148 Ibid at 39.

1149 Communication with Dr D Patrick, 20 August 1998.

1150 See supra, note 1146.

1151 Response to the Discussion Paper, dated 22 May 1997.

1152 Magnusson, supra, note 371 at 348.

1153 Ibid at 350.

1154 Ibid at 352.

1155 National Conference of State Legislatures. Fact Sheet: HIV Reporting. 1998 Health Policy Tracking Service, dated 10 July 1998 (available at http://stateserv.hpts.org/HPTS98/NFTS)

1156 California Lawmakers Approve HIV Reporting Using Coded IDs. AIDS Policy & Law 1998; 13(17): 1, 6.

1157 Under Pressure, CDC Ends Push for Name Reporting. AIDS Policy & Law 1998; 13(17): 6.

1158 See supra, note 320, at 43.

1159 See also, for France, La déclaration obligatoire de la séropositivité. Le Journ’ ALS, Spring 1998, at 5; for an overview focusing on France and the United Kingdom, Rapport du comité ad hoc sur la surveillance épidémiologique de l’infection par le VIH au Québec, supra, note 1147, Appendix 6.

1160 Supra, note 320 at 43.

1161 Gostin, Lazzarini & Flaherty, supra, note 1076 at 164.

1162 AIDS Action Committee & AIDS Action Council, supra, note 1113 at 3, with reference to Centers for Disease Control and Prevention. Morbidity and Mortality Weekly Report 1997; 46(37).

1163 AIDS Action Committee & AIDS Action Council, supra, note 1113 at 6.

1164 G Nash Colfax, AB Bindham. Health Benefits and Risks of Reporting HIV-Infected Individuals by Name. American Journal of Public Health 1998; 88(6): 876-879 at 877.

1165 Ibid at 878, with reference to C Levine, GL Stein. What’s In A Name? The Policy Implications of the CDC Definition of AIDS. Law Med Health Care 1991; 19: 278-290.

1166 Ibid, with reference to: Florida Investigates Breach of Confidentiality in HIV Records. AIDS Policy & Law 1996; 11(18): 1.

1167 Council of State and Territorial Epidemiologists and Centers for Disease Control and Prevention. Consultation on the Future of HIV/AIDS Surveillance. The Carter Center, 21-22 May 1997.

1168 Ibid, with reference to SM Kegeles et al. Mandatory Reporting of HIV Testing Would Deter Men from Being Tested. Journal of the American Medical Association 1989; 261: 1275-1276; EJ Fordyce et al. Mandatory Reporting of Human Immunodeficiency Virus Testing Would Deter Blacks and Hispanics from Being Tested. Journal of the American Medical Association 1989; 262: 349.

1169 A Forbes. Myths and Facts About HIV Case Reporting by Name Versus by Unique Identifier. September 1997.

1170 Nash Colfax & Bindham, supra, note 1164 at 878, with references.

1171 AK Nakashima et al. Effect of HIV Reporting by Name on Use of HIV Testing in Publicly Funded Counseling and Testing Programs. Journal of the American Medical Association 1998; 280(16): 1421.

1172 Supra, note 1113 at 9.

1173 American Civil Liberties Union, HIV Surveillance and Name Reporting, supra, note 85, with reference to GM Reed et al. An Assessment of the Impact of Mandatory Name Reporting on HIV Testing and Treatment. XI International Conference on AIDS, Vancouver, 1996, abstract Th.D.4958.

1174 American Civil Liberties Union, supra, note 85.

 

 


 

 

 

 

 

 

 

 

 

 

 

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