Feature

Anonymous HIV Testing: What Does it Mean in Policy and Practice? A Case Study in Newfoundland and Labrador, Canada Amanda Hancock, BComm, MSc(Med) Diana L. Gustafson, MEd, PhD HIV infection is not a legally notifiable disease at the national level in Canada; however, provincial and territorial officials voluntarily undertake notification to the Public Health Agency of Canada. A case study involving four community-based sites in Newfoundland and Labrador found that the absence of clear legislation concerning HIV testing presented challenges for nurses who had to interpret and comply with provincial legislation and agency policy while meeting the needs of test-seekers. This ambiguous messaging is part of other conflicting information about the availability of anonymous HIV testing that, along with other factors, may contribute to undertesting and under-diagnosis in the province. From a social justice perspective, developing a national HIV strategy and amending legislation to facilitate anonymous HIV testing might provide clearer direction to nurses and agencies, and promote public health by improving service delivery and increasing testing in under-tested, higher-risk-taking populations. (Journal of the Association of Nurses in AIDS Care, -, 1-14) Copyright Ó 2014 Association of Nurses in AIDS Care Key words: anonymous testing, confidentiality, HIV, mandatory reporting, policy, social justice, voluntary counseling and testing (VCT)

HIV is a preventable, sexually transmitted infection that causes immune dysfunction and for which there is currently no known cure. The United Nations Working Group on AIDS and the World Health Organization advanced a voluntary counseling and testing (VCT)

model that was adopted in 2006 by the Public Health Agency of Canada (PHAC, 2006b). The goals of VCT are to prevent disease transmission and promote health in HIV-infected and higher-risk-taking populations through improved access to counseling and safe, informed, and confidential testing. There are three VCT options: (a) nominal/name-based, (b) nonnominal/nonidentifying, and (c) anonymous (PHAC, 2007; 2010). These options are differentiated by the type of personal information collected, the coding system used to label the specimen sent to the laboratory for testing, and the options for recording and reporting test results (PHAC, 2010). Our initial observations in 2008 suggested that there were inconsistencies among government reports, academic literature, and public information about the availability of HIV testing options in a small urban center in Newfoundland and Labrador (NL). We suspected that test-seekers might experience similar confusion. We coined the more inclusive term, test-seeker, to avoid labels such as patient or client to describe individuals looking for HIV information and services, similar to the way in which Kodner and Spreeuwenberg (2002) referred to careseekers in a community health services context.

Amanda Hancock, BComm, MSc(Med), is a Senior HR Consultant, Regional Health Authority, St. John’s, Newfoundland and Labrador, Canada. Diana L. Gustafson, MEd, PhD, is an Associate Professor, Social Science and Health, Faculty of Medicine, Memorial University, St. John’s, Newfoundland and Labrador, Canada.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. -, No. -, -/- 2014, 1-14 http://dx.doi.org/10.1016/j.jana.2014.01.007 Copyright Ó 2014 Association of Nurses in AIDS Care

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To explore ambiguous messaging about HIV testing options, we designed a case study to compare provincial legislation and agency policy documents with reported practices described by front-line workers and administrative leads at four community-based sites. We wanted to know if anonymous HIV testing was permitted by legislation and available in NL, and how agency employees were negotiating the apparent contradictions between offering anonymous testing services and legislation that required name-based reporting. We adhered to the social constructivist tradition that is characterized by an emergent design, context-specific inquiry, and inductive data analysis. Our thematic content analysis of 63 documents and semi-structured interviews with seven agency employees revealed some of the practical challenges facing nurses and others who must comply with provincial legislation while meeting the needs of testseekers. We used a social justice lens to explore this ‘‘legal-regulatory limbo’’ (Walsh, 2007, p. 1) and the adequacy of policies under which HIV testing was being conducted. Our study highlights the need for a national HIV response strategy to address local variations across Canadian jurisdictions. Actionable messages for improving service delivery and increasing testing will be helpful to nurses and decision-makers in Canada and the United States, where under-testing among higher-risk-taking populations remains a serious public health concern.

HIV Testing Options and Name-Based Reporting Constitutional responsibility for the design, management, and delivery of health care and health services in Canada has historically been considered a matter of local rather than national concern (Wilson, 2004). Therefore, the regulation of public health services falls under provincial jurisdiction. This means that each province and territory is responsible for developing and enacting legislation to prevent the spread of communicable diseases including HIV. The PHAC adopted the VCT model in 2006 and defined three HIV testing options: nominal/namebased, non-nominal/nonidentifying, and anonymous (PHAC, 2007; 2010). Nominal/name-based testing requires test-seekers to provide personal information

when requested by the care provider, such as name and provincial medical care plan number (PHAC, 2010). The amount of information collected varies by Canadian jurisdiction. This information is then used to label specimens sent to the laboratory for testing. Test results are recorded on the test-seeker’s health care record. In NL, if the test result is positive, the care provider is obligated by law to notify public health officials and report other information including name, age, sex, and address of the testseeker (Communicable Diseases Act, Chapter C-26, 1990). The procedure for non-nominal/nonidentifying testing also varies by jurisdiction and, like the nominal option, may require collection of the test-seeker’s name and medical care plan number, among other information. The provider uses an alphanumeric code or other identifier to label the specimens sent to the laboratory (PHAC, 2010). Test results are recorded in the test-seeker’s health care record. As with the nominal testing option, the care provider is legally required to notify public health officials if the test result is positive. In the case of anonymous testing, information such as the test-seeker’s age, gender, HIV-related risk factors, and ethnicity may be requested depending on the province or territory or particular test site in which the test is ordered and/or collected (PHAC, 2010). The test is ordered and recorded using a code as the identifier, as the care provider does not request the identity of the test seeker. This means that the care provider may visually identify the person who was tested but would be unable to link the test result to that person. Consequently, test results could not be recorded on the test-seeker’s health care record. There is notable variation in how Canadian provinces and territories approach anonymous testing, name-based reporting, partner notification, and contact tracing (Jurgens, 2001). Although HIV infection is not legally notifiable at the national level, notification to the PHAC is voluntarily undertaken at the provincial and territorial level on a non-nominal basis (PHAC, 2007; 2010). Thus, the interpretation and application of name-based reporting legislation and the decision to offer anonymous testing is determined in each province and territory. As O’Byrne (2011) pointed out, this has ethico-legal implications for nurses and other health care professionals in fulfilling

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their obligations to conduct a purposive assessment, obtain informed consent, and document clinical data at the point of service delivery.

Why Newfoundland and Labrador? Providing Provincial Context Why did we decide to focus on Newfoundland and Labrador? A couple of significant factors make NL a unique case. The first concerns conflicting information about the availability of anonymous HIV testing in the province. The PHAC (2007) epidemiology report stated that anonymous HIV testing was available in NL as well as Alberta, Saskatchewan, Ontario, Quebec, New Brunswick, Nova Scotia, and Manitoba. A footnote in the table titled, Status of Anonymous HIV testing by province territory, explained that this type of testing was ‘‘available upon request but is not part of the official guidelines for the province’’ (PHAC, 2007, p. 3). Another table in the same report (HIV testing and HIV reporting by province/ territory) included a footnote stating that in NL ‘‘if someone tests positive for HIV through an anonymous test, that individual becomes part of the nominal/name-based system, in which counselling, follow-up care and HIV data reporting are all done nominally’’ (PHAC, 2007, p. 2). This description of the procedure for carrying out anonymous testing was at odds with the PHAC (2007) definition of anonymous testing, which specified that the person ordering the HIV test would not know the identity of the person being tested. Logically, this would make name-based reporting impossible. The footnote rendered visible the potential for confusion (on the part of both front-line workers and test-seekers) between testing options and mandatory reporting of positive results. Inconsistent messaging extended to the Newfoundland and Labrador Communicable Diseases Act. First introduced in 1970 and amended in 2004 and 2006, sections pertaining to mandatory namebased reporting have not yet been updated. Section 4 of the Act outlined the requirement for physicians to report the names of all those who test positive for conditions or diseases covered by the Act, including HIV and AIDS, to the deputy minister of health (Communicable Diseases Act, Chapter C-26,

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1990). The Act has no clear statement on acceptable HIV testing practices. This silence can translate into complex and practical challenges at the point of service delivery. These challenges may be dealt with differently, depending on the mandate of the agency (i.e., whether it is community-based or affiliated with a regional health authority), how an agency translates provincial legislation into policies and procedures governing clinical practices, and the professional discretion of the individual care provider. During the same year that the PHAC epidemiology report was released, advertisements for anonymous HIV testing appeared in city and university student newspapers in NL (Anonymous testing for HIV, hepatitis A, B, and C, 2008). Interestingly, however, a needs assessment conducted in 2005–2006 reported that anonymous HIV testing was not available in NL (Gustafson, Goodyear, & Keough, 2008). Thus, we observed yet another example of conflicting messaging. A separate issue relating to the stigmatization of HIV infection also makes the NL case unique. In 1991, Raymond Mercer was charged with knowingly infecting two women in Conception Bay North, a small community on Newfoundland’s east coast. Some reports claimed that 41 of the 156 people infected with HIV in NL lived in that community and could be traced to Mercer (Bergman & Welbourn, 1995). Mercer pled guilty to criminal negligence causing bodily harm through transmission of HIV and was sentenced to 2½ years in prison. His sentence was later increased to 11 years in a precedent-setting court case (Elliot, 1997). In 2000, Mercer was denied parole (CBC News, 2000) and was released in 2003 after serving his full term. Mercer’s arrest, trial, and legal proceedings became the focus of national media in the 1990s, creating a link between NL and HIV in the Canadian public perception. Economic activity was negatively impacted, tourism revenues declined, and the Red Cross stopped collecting blood in the area (Bergman & Welbourn, 1995). The region was referred to in one scientific journal as ‘‘the AIDS capital of Canada’’ (Ryan, 1998). The Mercer case marked a watershed moment in the trend toward HIV criminalization and the HIV narrative in NL. According to Goldstein (2004), this narrative created a context in which the effects of stigma remained a lingering concern and worked, in

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some cases, against public health discourses about harm reduction and managing risk. Her argument was supported by studies indicating that nondisclosure prosecutions represented a ‘‘clear disincentive to testing’’ (Lowbury & Kinghorn, 2006, p. 666; see also Mykhalovskiy, 2011, O’Byrne et al., 2013). There have been 96 prosecutions since 1998 when the Supreme Court of Canada ruled that people living with HIV must disclose their status prior to any activity that may pose a ‘‘significant risk’’ for HIV transmission (O’Byrne, 2011, p. 339). One Canadian study suggested that test-seekers who perceived a problematic association between public health departments and police services were less likely to access public health services and, therefore, less likely to find out their HIV status (O’Byrne et al., 2013). The potential for criminal prosecution for HIV exposure, nondisclosure, and transmission has further amplified concerns about anonymity, confidentiality, and control over health decisions. Awad, Sagrestans, Kittleson, and Savela (2004) argued that stigmatization of HIV infection meant that test-seekers expected HIV testing services to offer a higher degree of confidentiality. Test-seekers may be less willing to provide the personal information that providers expect to gather or believe they must gather according to government legislation or agency policy. This expectation holds special significance in a province that received such notoriety early in the pandemic. Moreover, the expectation of confidentiality is further heightened for those living in small urban, rural, and isolated communities where there is a perception that ‘‘everyone knows their neighbour’s business’’ (Gustafson et al., 2008, p. 190). Improving access to testing is the best practice prevention strategy for HIV because it has the potential to reduce the number of individuals who are unaware of their serostatus (Jurgens, 2001; Obermeyer & Osborn, 2007). Surveillance data have indicated that approximately 26% of infected Canadians are unaware of their positive HIV status (PHAC, 2010). Improving access to testing is especially important for groups considered to be at higher risk for infection, such as immigrants and refugees from HIVendemic countries (Mitra, Jacobsen, O’Connor, Pottie, & Tugwell, 2006), people who inject drugs (Strathdee et al., 2010), aboriginal populations

(Mehrabadi et al., 2008), migrant workers (Goldenberg, Shoveller, Koehoorn, & Ostry, 2007), men who have sex with men and sex trade workers (Kucirka et al., 2011; O’Byrne et al., 2013), and those living in small urban centers and rural and isolated communities. Anonymous testing is one way to improve access because it is associated with enhanced client confidentiality, increased control over health and treatment options, and reduced fear of criminal prosecution (Awad et al., 2004; Mykhalovskiy, 2011). When individuals learn that they have HIV infection, they tend to adopt safer sex practices, begin a regime of medication to reduce their viral loads, and are, therefore, less likely to transmit the virus (O’Byrne et al., 2013). Whether individual agency workers can offer anonymous testing is organized by relevant federal and provincial legislation, local agency policy, and professional practice guidelines. Local agencies are responsible for establishing testing policies and procedures based on their interpretation of legislation that, in the case of HIV testing in NL, is explicit about reporting but silent about testing (Communicable Diseases Act, Chapter C-26, 1990). Consider a situation in which a nurse believes an anonymous test would be the most effective intervention for a particular test-seeker. Now, assume that the nurse believes the legislation prohibits her or him from offering an anonymous test. When legislation is silent or clarification from the government is absent, or where the agency’s policy is perceived to conflict with the legislation, the nurse faces a clinical dilemma and, potentially, ethical dilemmas as well. Most front-line workers will be guided by their professional training and experience, professional codes of conduct (Baum, Gollust, Goold, & Jacobson, 2007), or other discipline-specific protocols such as a code of ethics for registered nurses. These documents, however, leave room for interpretation. For example, the Canadian Guidelines on Sexually Transmitted Infections were developed for public health providers of HIV prevention and sexual and reproductive health programs and services in Canada (PHAC, 2006a). The guidelines do not address procedural and legislative variations among provinces, the differences in caring for Canada’s diverse populations, or ways to deal with day-to-day challenges of service delivery. As a result, the onus falls on the

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individual care provider to resolve real world conflicts by weighing professional obligations to care, agency policies and politics, and ethical/legal considerations. Such clinical dilemmas can result in differences in individual decision-making and inconsistent service delivery within the same agency or across agencies in the same province. Nurses’ clinical practice decisions can also be implicated in the prosecution of test-seekers whose well-being they are striving to protect (O’Byrne, 2011). In summary, anonymous HIV tests are ordered using a code that does not identify the test-seeker or link the result to the individual. This is contrary to a footnote regarding the availability of anonymous testing in NL, which states that a positive result determined in an anonymous test becomes part of the namebased system (PHAC, 2007). Anonymous testing is regarded as a best-practice prevention strategy because it has the potential to reduce the number of individuals who are unaware of their serostatus and therefore to reduce the potential for disease transmission. Anonymous HIV testing offers test-seekers a greater degree of confidentiality that may be of special significance for those groups considered at higher risk for infection; those fearing criminal prosecution; those living in small urban, rural, and isolated communities; and residents of NL, a province stigmatized as the AIDS capital of Canada early in the pandemic. There have been mixed messages about the availability of anonymous HIV testing in NL. The NL Communicable Diseases Act (Communicable Diseases Act, Chapter C-26, 1990) has not been amended to address developments in HIV treatment and prevention, and has no clear statement on acceptable testing practices. These factors converge to create a situation where community agencies must translate ambiguous provincial legislation into policies governing everyday clinical practices, and nurses and other front-line workers must navigate professionally risky terrain to provide timely and just care to individual test-seekers.

Case Study Design This article is based on research that explored the congruence between policy and practice in anonymous HIV testing in one small urban center in NL.

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Our goal was to explore meanings communicated in agency policy documents and interpreted by those providing HIV testing services. In developing this case study, we adhered to the social constructivist tradition that is characterized by an emergent design, context-specific inquiry, and inductive data analysis (Creswell, 2013; Wrede, 2010). The Human Investigation Committee, Memorial University and the Research Proposal Approval Committee of the regional health authority in which the study was undertaken granted ethical approval. Participants signed a voluntary informed consent form. Stake’s (1995) instrumental case study design was well suited to our research question because it is context-dependent, specific, and bound by time and space. The specificity and uniqueness of our case was described in the previous section. The case focused narrowly on the availability of anonymous HIV testing in four community-based settings in one small urban center in NL in 2009. Testing services that had been offered in acute care settings in the region were discontinued in 2006, effectively limiting our investigation to community-based settings. Rigor was achieved through triangulation of data collection methods and data sources, member checking, prolonged engagement, data saturation, and intercoder reliability testing in data analysis. Data collection and analysis was a two-step emergent process beginning with gathering all formal and informal documents pertaining to HIV testing procedures at the four sites. Although Sites 3 and 4 had different physical locations, they shared governance by the regional health authority and all retrieved documents were identical. For the purposes of simplifying representation here, we combined data from Sites 3 and 4. The 63 retrieved documents were labeled alphanumerically and categorized by type (clinical, legal, education, prevention and awareness, or policy related; see Table 1). Documents were also classified as current (i.e., in use at the time of the study) or historical (i.e., previous versions or drafts). The letter codes A, C, and E represented current documents retrieved from Sites 1, 2, and 3/4, respectively; letter codes B, D, and F represented historical documents from Sites 1, 2, and 3/4, respectively. The documents were organized for analysis in a hierarchy diagram called a document tree. These document trees provided an at-a-glance representation of

6 JANAC Vol. -, No. -, -/- 2014 Table 1.

Classification of Documents by Type Document Type

Site 1 Site 2 Sites 3/4

Clinical Current Historical Legal Current Historical Education, prevention, and awareness Current Historical Policy-related Current Historical Total documents reviewed

3 2 1 0

0

0

0

9 4 5 3 1 2 15

36 29 6 4 4 0 40

3 2 1 0

5 3 2 8

each agency’s past and current interpretation of provincial legislation. The alphanumeric codes are used to reference agency-specific documents in the findings section. The principal participant at each site confirmed the completeness and accuracy of the document trees. Document review also guided the development of the semi-structured interview protocol. The second part of the process was to understand how agency workers responded to requests by HIV test-seekers. We interviewed three agency principals and four additional participants identified by the principal as a key service provider at each physical site where testing was offered or the main point of contact for testing inquiries where testing was not offered. The average duration of semi-structured interviews

Table 2.

was 75 minutes. We observed data saturation, or the point at which no new themes were emerging, in three distinct ways: (a) data repetition within individual interviews, (b) data redundancy across interviews with different participants, and (c) participants’ confirmation of the document trees (Bowen, 2008). Interviews were transcribed verbatim and analyzed according to Strauss and Corbin’s (1990) coding method that revealed the themes presented below.

Results Overview of Community Agencies and Documentary Evidence Site 1 was a community-based organization with a provincial mandate to promote sexual health and reproductive choice. Documents (Doc B1, B2) indicated that anonymous testing had been offered onsite previously, as part of a research study, but at the time of our study, there was no option for onsite HIV testing. A physician provided test-seekers with a requisition for a nominal HIV test that could be drawn at any laboratory in the area (Doc A5, A7). Clients seeking anonymous testing were referred to Sites 3 or 4 (Doc B2; see Table 2). Site 2 was a community-based organization with a provincial mandate to support HIV prevention, awareness, and education. At the time of the study, this site was not offering any on-site testing options and all inquiries were directed off site (Doc C7).

Documents Demonstrating Current and Past Testing Practices Agency Code

Site 1

Site 2

Sites 3/4

Total documents Total number of current documents Evidence of current HIV testing procedures Historical evidence of anonymous HIV testing

15 7

40 34

8 5

A5 – Intake Sheet A7 – Policy Manual B1 – STIs and Your Relationship B2 – When and where to get tested for STIs B7 – Policies for HIV Testing B2 - When and Where to Get Tested for STIs

C7 – HIV Testing Public Health NL - Phone Numbers None

E3 – Testing, Treatment, and Reporting of STIs None

C9 – HIVAntibody Testing in NL C10 – Letter to Chief Medical Officers

None

Current evidence of anonymous HIV testing

Note: STI 5 sexually transmitted infection; NL 5 Newfoundland and Labrador.

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Document C9 stated that anonymous testing was not available in NL. A letter addressed to the Chief Medical Officer at the Department of Health and Community Services requested clarification of the legal boundaries of HIV testing and details on current availability and locations of HIV testing services. The following excerpt from this letter indicates the agency’s support of anonymous testing: Given the stigma associated with HIV and HCV many people are reluctant to come forward to be tested for either of these infections due to their fears of anyone finding out that they have even been tested regardless of the results. Due to the fact that illicit drug use (injecting, smoking or snorting) can be a major method of transmission, we believe that there is a clear need for easy access to this less stigmatizing method of (anonymous) testing. (Doc C10, p. 1) Sites 3 and 4 shared governance by the regional health authority, but their physical locations attracted different test-seekers. There was no documentary evidence indicating that anonymous testing had ever been offered officially at either site. The Communicable Diseases Act (Doc E1) stated that all positive cases had to be reported by name, age, and sex. This implied that testing was nominal or name-based in order to comply with reporting requirements. The other main policy document for Sites 3 and 4, Testing, Treatment and Reporting of Sexually Transmitted Infections (Doc E3), stated that all positive cases should be reported using the assigned code. This language was consistent with the PHAC definition of non-nominal testing. Site 3 was located in a commercial/industrial area outside walking distance of the downtown core; its main clientele were test-seekers referred by employees or volunteers at Sites 1 and 2, and users of other public health services offered at the site. At the time of the study, Site 3 had an official nonnominal testing policy (Doc E3). Site 4 was located downtown and also had an official non-nominal policy (Doc E3). Posters in the windows advertised nonames testing to promote services to youth and walk-ins.

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Making Meaning of Current Legislation All study participants agreed on three issues. They assumed, first, that the NL Communicable Diseases Act prohibited anonymous HIV testing and that their agency policy reflected that restriction; second, that name-based reporting of positive tests was mandatory; and third, that there would be legal consequences if they failed to meet these obligations. Participants from the regional health authority (Sites 3 and 4) recognized their close connection to the provincial government and demonstrated a thorough understanding of the reporting process: positive cases were reported by name on an individual basis to the Department of Health and Community Services and in aggregate to federal authorities. The Minister of Health and Community Services has the ultimate responsibility for the Act; however, this authority may be delegated to the Chief Medical Officer of Health and the Regional Medical Officers of Health. Participant A indicated the need to abide by provincial legislation, saying, ‘‘the law requires namebased reporting.’’ Some participants believed that providing anonymous HIV testing services was illegal in the province and feared that providing anonymous testing would result in prosecution of health care providers and/or eventual shut-down of their clinics. We can only function here as a clinic because our doctors pay our overhead fees. Our doctors get paid by MCP [Medical Care Plan]. They’re not paid by any program, any study. I mean, government funded and, you know [pause], so it’s not fair for our doctors to provide a service after going to school for so many years and using our clinic’s supplies, you know. (Participant G) Two provincial government representatives for communicable diseases, whom we contacted for an official response later, supported this interpretation. A representative from the Department of Health acknowledged that there were some legal complexities to interpreting the Act but that it was ‘‘safe to assume’’ that an Act requiring mandatory reporting might be interpreted as prohibiting anonymous testing (G.B., personal communication, March 4, 2010). A solicitor (i.e., attorney or lawyer) with the Department of Justice pointed out that Section 4 outlined mandatory

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reporting provisions, while Section 3/4 stipulated the offence where a person willfully committed a breach of the Act. The solicitor was unsure if Section 4 had ever been enforced and also noted that the Act might be in need of updating (G.S., personal communication, March 8, 2010). At the time of this writing there had been no revisions to these sections of the Act. With the exceptions of Manitoba, Nova Scotia, and New Brunswick, most provinces have penalties for failing to report a communicable disease. Penalties can range from $100 in NL up to $200,000 or 12 months in jail (or both) in British Columbia (Hill, 2012). At the time of this writing, we could find no instance of regulated health professionals who were charged under a provincial act with failing to report a positive case of a communicable disease. Is Anonymous HIV Testing Available or Not? Of the four study sites, only Sites 3 and 4 provided HIV testing services. Neither of these sites reported offering anonymous HIV testing at the time of our study and, in that way, participants felt their practices were aligned with their agency’s expectations and consistent with legal, ethical, and professional practice obligations. Participants and documentary evidence confirmed, however, that anonymous HIV testing had been available in the past as part of a since-completed research study where researchers had obtained ethical approval to exempt those tested anonymously from mandatory name-based reporting requirements. This temporary offer of anonymous testing concluded prior to January 2009, when our data collection commenced. Participant B spoke about the study: We used to offer testing. We don’t at the present moment. I think it was in 2004 – a [health care professional] from public health was doing some research into a rapid HIV/Hep-C test. So there was a partnership struck between the [health care professional] and us, which resulted in a [health care professional] working out of our office. [pause] So we turned one of the offices into a clinic; and if anybody came in for, like if anybody called us for an HIV test, we could say, ‘‘You could do it here as part of a research study. It’s anonymous and yada, yada, yada.’’ So that [health care professional]

was working with us for 3 hours a week or so, people would come in because we had advertised we offered testing, anonymous testing. (Participant B) Participant D’s words highlighted legal-regulatory concerns about offering anonymous HIV testing in a province where they interpreted the legislation as prohibiting this option. The board took a look at the liability situation, and when we had the testing . under the research project, all the liability was within the research project. The [health care professionals] had their own licenses and liability insurance, right? Now the research is over. (Participant D) That earlier research study may account for the inconsistent messaging we first observed and later confirmed about anonymous HIV testing: On the one hand, the PHAC (2007) epidemiology report, from a federally funded health agency, indicated that anonymous testing was available in NL under some circumstances, and on the other hand, the silence in the Communicable Diseases Act about testing options has been interpreted by nurses and agencies to mean that anonymous testing was prohibited by law. Negotiating Everyday Challenges Participants spoke about the everyday challenges of meeting the needs of test-seekers who wanted an anonymous test while obtaining personal information required by agency policy for testing and reporting purposes. Conversations often focused on individuals who returned frequently and reported engaging in unprotected sex, sex for money, sex with multiple partners, injection drug use, or sharing of drug paraphernalia. Participants also characterized those engaged in higher risk-taking behaviors as more likely to be living with financial instability, low literacy levels, and other negative psychosocial circumstances. These findings were consistent with harm reduction literature (Gustafson et al., 2008; Hilton, Thompson, Moore-Dempsey, & Janzen, 2008). Modifying testing practices at the point of service delivery was viewed as one way to increase the

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likelihood that a test-seeker, at some future date, would accept treatment or education. Interviews also revealed that if a care provider deemed it necessary, a test would be carried out with or without contact information, and the specimens were labeled in a manner with which the testseeker was comfortable. Efforts would be made at a later date to obtain contact information and perform required follow-up as determined by the test result. Some participants indicated a willingness to perform tests even when they knew or suspected that the information provided by the test-seeker was false or inaccurate. The words of Participant F demonstrated the struggle to negotiate this risky terrain: I do take a name. I ask for a name. If a person doesn’t feel comfortable giving me a name, it’s not mandatory, but I do need to have, you know, some way so that I know that this is, you know, John Brown in front of me. If a person wants to give me a false name, they can. Some people do. They might give me their first name and their middle name, or their middle name and their last name. I use a chart number. I do use a date of birth, and I do like contact information, and the contact information is only if they have a positive test result and they don’t come back to clinic for some reason. To get their results, they must come back to clinic. (Participant F) Interestingly, participants who reported modifying procedures to meet the needs of the test-seeker considered these discretionary changes to be consistent with non-nominal testing. It appeared, however, that the practices they reported may have been more akin to the PHAC definition of anonymous testing, which excluded the requirement to provide personal information in order to address test-seekers’ concerns about identification disclosure (Hecht et al., 2000). Because of the potential for legal liability for nurses and others participating in this study, it is important for us to note here that we did not observe study participants’ actual HIV testing activities or how they engaged with test-seekers and therefore, we cannot draw any conclusions about whether they may have, on occasion, operated in violation of the NL Communicable Diseases Act. Nor do we know

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if the Act would be enforced if a positive case were not reported because a care provider had respected a test-seeker’s request not to record his/her name at the time of testing. The inconsistencies in use of testing terminology observed by study participants and lack of clarity in the legislation may have translated into misunderstanding and miscommunication among agency workers and between the front-line workers and test-seekers (Awad et al., 2004). One participant reflected on the blurring of testing terms and practice. They realized that what they were doing was in fact non-nominal testing. They might have been talking about anonymous; but when we sat down and looked at the definitions where anonymous means that you have no recorded information about the individual, no way of contacting, and no way of whatever, then they realized that, in fact, our practice has been non-nominal. (Participant A) Participant B attributed interchangeable use of the terms as a response to literacy problems in the testseeker population. She believed that the concept of non-nominal was more difficult for test-seekers to understand than anonymous. Using the term anonymous was a way to find common ground with test-seekers: ‘‘If you use words that are too big–if someone has a literacy issue, they’re not going to get the message. So, and again, that’s why I think the word anonymous is . more understood by everybody than nonnominal.’’ The interchangeable use of terms by front-line workers illustrated well the impact of ambiguous public policy on clinical practice and messaging about the availability of HIV testing options. Legislative restrictions and the history of a research study in NL temporarily allowing anonymous HIV testing further added to the confusion. These factors might also have contributed to ambiguous messaging in the media and the anecdotal evidence that provoked our investigation. Advocating for Change All participants agreed that nominal and nonnominal testing were the only options officially available in the region. For that reason, non-nominal

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testing was the preferred option when it was possible to obtain a test-seeker’s personal identifiers and contact information. At the same time, most agreed that offering HIV testing that was explicitly referred to as anonymous would be especially beneficial for those who might not otherwise seek out the service or distinguish subtleties in testing definitions. Participant A reflected the sentiments of all who agreed that legislative change was needed. I think there’s a place for anonymous testing. You know, I think it can be set up. We don’t have it . I think we’re actually providing a service. If the environment changes to allow us to provide it, I would encourage it. (Participant A) Most participants acknowledged the time and public interest required to bring about legislative change. Participant A went on to talk about the grassroots advocacy needed to effect change: Legislation is complex. It requires a large number of people understanding the issue and deciding to move on it. Legislation is passed by the House of Assembly, and I think we would need that support in order to move towards anonymous testing capacity. Now I would say the government is not going to act on our request at the moment. If anonymous testing truly is something that is useful and desirable, it’s going to have to be a matter of public debate, and outside agencies are going to have to bring it up to government independent of whether we’re discussing it or not because unless that information [is publicly available], or unless the discussion is occurring [in public], it’s not going to be recognized [by government] as an issue that needs to be dealt with. (Participant A) The front-line workers and administrators we interviewed were knowledgeable about HIV, informed about local issues, and deeply invested in providing optimal care and counseling to test-seekers in their communities. Document C9 was the only evidence we found showing an agency’s active role advocating for anonymous HIV testing. While those we spoke with were clear about positive impacts that would result from providing anonymous testing,

they seemed less convinced about their collective role in effecting change or their participation in that process.

Discussion This case study revealed the professionally risky terrain facing nurses and others who must operate in a context where there is (a) a mandatory namebased reporting requirement, (b) ambiguous legislation on HIV testing options, (c) under-testing for a stigmatized infection, and (d) fear of legal wrongdoing. Front-line workers must make difficult judgments to provide timely and just care to test-seekers while navigating legislative and judicial boundaries that might be interpreted to prohibit offering anonymous HIV testing. Rioux (2010) made a compelling argument that judgments ‘‘are the nature of the business’’ for care providers and policymakers (p. 93). These judgments impact the health of individuals and populations and, in the case of those living with or at higher risk for contracting and transmitting HIV, impact how and under what conditions they have access to HIV testing. In 1998, the United Nations Commission on Human Rights (1998) recognized the relationship between human rights and HIV and the right to the highest possible standards of physical and mental health, the right to adequate medical care, and the obligation that governments address discrimination that may interfere with access to health services. Failing to address these conditions means that some individuals and populations are less able to exercise their rights to health. A human rights or social justice approach to HIV testing means assessing the design, implementation, and evaluation of testing policies and services with a view to enhance rather than diminish individual health and well-being. Those at greater risk for HIV infection would benefit most from anonymous testing services in NL if the legislation allowed it; hence, providing anonymous testing would enhance this population’s potential for wellness. Making this legislative judgment would be a statement in favor of human rights for those living with or at greater risk for HIV infection.

Hancock, Gustafson / Anonymous HIV Testing in Policy and Practice

NL’s Communicable Diseases Act is silent with respect to HIV testing, but explicit about the mandatory requirement to report the name of test-seekers with a positive HIV test result. The absence of explicit legislation to guide testing and reporting sends ambiguous messages about acceptable provider practices, a space that has been referred to as ‘‘legal-regulatory limbo’’ (Walsh, 2007, p. 1). It is our view that NL’s Communicable Diseases Act, by omission, fails to provide legislative direction that would facilitate adequate test-seekers’ access to all VCT options. The current legal-regulatory limbo in the NL Communicable Diseases Act threatens effective service delivery in the following four ways: first, it constrains care providers from making decisions that are viewed as just, reasonable, and necessary in other parts of Canada; second, it puts care providers at risk of breaching the Act; third, it may detract from, rather than contribute to, the primary goals of disease prevention by impeding adequate and reasonable access to HIV testing–including the option of being tested anonymously. The fourth potential outcome is that the legislative silence may be construed as a legal loophole whereby persons living with HIV might be prosecuted (O’Byrne et al., 2013). From a social justice perspective, the government has an obligation to consider anonymous HIV testing in a small province where the expectation of confidentiality holds special historical significance. Having an anonymous testing option might positively impact the decision-making of those who may be unsure of their HIV status but who fear nondisclosure criminal prosecution (O’Byrne et al., 2013). Clear, unambiguous legislation would also clarify the role of those providing services in community-based and public health settings. Such legislation has been developed by other Canadian provinces and could be adopted in NL. A national HIV response strategy and repealing laws that criminalize HIV have the potential to address this issue by advancing a systematic and integrated approach to HIV (O’Byrne et al., 2013). Together these actions might enable health care providers and agencies to respond more effectively to the needs of test-seekers.

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Actionable Messages Although the lessons learned in this case study shed light on a local problem, the findings might be relevant to front-line workers who question policies governing HIV testing in other jurisdictions in Canada, the United States, and elsewhere. Nurses, as the largest group of health care professionals, are uniquely positioned to mobilize communities to lobby governments at all levels for improvements to HIV response strategies (O’Byrne, 2011). The first goal would be to provide clearer direction on HIV testing options, and specifically, to incorporate language that permits anonymous HIV testing. At the local level, NL’s Department of Health and Community Services might work with regional health authorities, community-based sexual health and AIDS organizations, nursing and other health professional organizations, and stakeholders to clarify and update the Communicable Diseases Act. There are precedents where provincial governments and health professional associations have successfully collaborated to develop legislation and practice guidelines. For instance, the Ontario Medical Association and the Minister of Health and Long-Term Care collaborated to develop Communicable Disease Surveillance Protocols (Ontario Hospital Association, 2011). In Nova Scotia, the Department of Health Promotion and Protection and Public Health Services published documents for providers and test-seekers clarifying the requirements for HIV testing (HIV Testing & Reporting in Nova Scotia, 2009). Communicable disease legislation enacted in British Columbia, Nova Scotia, Quebec, and New Brunswick provides legislative language for better aligning VCT options with reporting requirements. For example, Nova Scotia’s Health Protection Act qualified the reporting requirements for a positive test of a reportable condition with the phrase ‘‘to the extent possible’’ (Government of Nova Scotia, 2005, { 8). Similar qualifiers were noted in legislation proclaimed in Quebec: ‘‘if it is available’’ (Government of Quebec, 2003, { 10); and in New Brunswick: ‘‘if known’’ (Public Health Act, 2009, p. 6). The Communicable Diseases Act of British Columbia was amended to stipulate that a report

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made under mandatory reporting requirements respecting ‘‘a person who voluntarily submitted to testing for HIV must omit the name and address of the person if that person so chooses’’ (Public Health Act, 1983, { 4). This change would appear to allow a care provider in that province to provide the anonymous testing option without contravening the mandatory reporting requirement. Such qualifiers leave discretionary room for the care provider to omit personal identifying details if, for example, these details were too challenging to collect. Our study supports the work of others advocating for a national HIV response strategy. An integrated strategy would improve HIV prevention strategy and policy-relevant communication and coordination across Canada’s health care system. The lack of coordination is evident in the delivery of HIV testing services. At the federal level, it would be useful for future PHAC epidemiology updates to contain a list of provincial contacts from which accurate local information on HIV testing could be obtained. The Canadian Guidelines on Sexually Transmitted Infections might be updated to address challenging clinical dilemmas. For example, practice guidelines such as those advanced by O’Byrne (2011) might include strategies for conducting a purposive assessment, providing timely and complete information, obtaining informed consent, and documenting clinical data. Guidance that supports nurses in meeting their professional obligations to provide care to test-seekers could, at the same time, protect nurses from legal liability or being implicated in the prosecution of test-seekers. The lessons learned in our case study suggest that more detailed examination of communicable diseases legislation is required in Canadian provinces and territories that have not recently amended sections pertaining to anonymous HIV testing. This would be especially important in contexts such as NL where there is under-testing and under-diagnosis of higher risk-taking populations, and in provinces and territories with small urban, rural, and isolated communities where anonymous HIV testing may hold particular significance.

Key Considerations  Anonymous HIV testing is an important option for addressing under-testing and underdiagnosis of higher-risk-taking populations, especially in regions with small urban, rural, and isolated communities where HIV infections may have unique historical significance and expectations of confidentiality are heightened.  Nurses and other front-line workers operate in risky terrain where there is (a) mandatory name-based reporting requirements, (b) ambiguous legislation on HIV testing options, (c) under-testing for a stigmatized infection, and (d) fear of legal wrong-doing.  Nurses, as the largest group of health care professionals, are uniquely positioned to mobilize communities to lobby governments for improvements to HIV response strategies, including providing clear direction on HIV testing options and recommending language that permits anonymous HIV testing.  Making the legislative judgment to provide anonymous HIV testing is a statement in favor of human rights for those living with or at greater risk for HIV infection.

Disclosures The first author is currently employed by a regional health authority in the province. The second author reports no real or perceived vested interests that relate to this article that could be construed as a conflict of interest.

Acknowledgments We acknowledge the financial support of the Atlantic Regional Training Centre, the editorial support of Darlene Tobin, and helpful comments from our anonymous reviewers.

Hancock, Gustafson / Anonymous HIV Testing in Policy and Practice

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Anonymous HIV testing: what does it mean in policy and practice? A case study in Newfoundland and Labrador, Canada.

HIV infection is not a legally notifiable disease at the national level in Canada; however, provincial and territorial officials voluntarily undertake...
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