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Briefing Document 29

HIV and Disclosure and Confidentiality

This Briefing Document explores issues surrounding HIV/AIDS and Disclosure, such as Issues Raised, Constitutional Right to Privacy, Testing, The Duty to Warn, Counseling Records, Partner Notification, Workplace Issues, Healthcare Settings, Insurance, Computerized Databases, The Cuerrier Case, Shared IDU Equipment, and Policy in AIDS Organizations.

Briefing Document #29 is one of an on-going series. Visit the catalogue of Briefing Documents.

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AIDS Calgary Awareness Association

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Issues of HIV and Disclosure and Confidentiality

A multitude of organizations and individuals in Canada have analysed the issues raised by disclosure and confidentiality of HIV status. The Canadian Bar Association, the National Advisory Committee on AIDS, the Royal Society of Canada, the Privacy Commissioner of Canada, as well as numerous provincial agencies have stressed the importance of confidentiality but acknowledge the limits of its application.

"There continues to be a lack of consensus regarding whether and, if yes, how positive test results should have to be reported to public health authorities; and how partner notification should be undertaken to warn partners of HIV-positive people about their risk of having contracted HIV" (Jurgens 1998).

 

Confidentiality is crucial to persons living with HIV or AIDS. Since HIV infection is associated with sexual and drug related activities, disclosure can expose HIV-positive individuals to stigmatization, discrimination, and rejection by family, friends, and community. In addition, HIV/AIDS disproportionately affects already marginalized individuals who would be even further ostracized if their status were to be disclosed (Jurgens 1998).

Federal, provincial, and local agencies view disclosure differently in various situations. This document will attempt to clarify the situation as it applies to the Calgary community.

 

Constitutional Right to Privacy

Sections 7 and 8 of the Canadian Charter of Rights and Freedoms recognize the individual’s right to privacy in relation to information about themselves and the individual’s right to be protected against ‘unreasonable search or seizure’. When deciding whether or not confidential information should be disclosed to prosecutors, the court must balance the need for individual privacy with the need for effective law enforcement (Elliot 1999).

The Supreme Court of Canada has indicated that in balancing privacy and law enforcement interests, specific factors be followed (Elliot 1999):

  1. "The nature of the information".
  2. "The nature of the relationship between the party releasing the information and the party claiming its confidentiality".
  3. "The place where the information was obtained".
  4. "The manner in which it was obtained".
  5. "The seriousness of the crime being investigated".

"The issue of medical confidentiality is so important in the HIV testing and reporting context because it has been widely recognized as a central element in the effective response to AIDS" (Jurgens 1998).

 

Confidentiality and Testing

Confidentiality is seen as crucial to encouraging those most at risk for HIV to come forward for testing and medical attention. On the other hand, "[t]he appropriate collection, use, and disclosure of HIV-related personal information" can contribute to medical and social epidemiological knowledge which may aid in treatment, prevention, and education initiatives (Jurgens 1998). On May 1, 1998, HIV infection became a notifiable disease in Alberta, thus each positive test must be reported to Alberta Health and Wellness, in accordance with the Communicable Diseases Regulation (http://xweb.crha-health.ab.ca/clin/sac/publiche.htm). On an individual basis, however, disclosure of a positive HIV-antibody test may lead to social isolation, family estrangement, and loss of employment, housing, and insurance (Jurgens 1998).

 

The "Duty to Warn"

Canadian common law recognizes the duty of healthcare professionals to maintain patient confidentiality. In most cases, it is considered professional misconduct for a healthcare professional to disclose patient information without consent. However, legal and professional bodies have recognized that confidentiality must give way in certain circumstances to protection of the public interest. For example, the Canadian Medical Association advises physicians that disclosure of a patient’s HIV status to a current sexual partner may not be unethical when specific criteria are met (Elliot 1999):

  1. The partner is at risk of infection with HIV and has no other reasonable means of knowing.
  2. The patient has refused to inform their sexual partner.
  1. The patient will not allow a physician to inform the sexual partner on the patient’s behalf.
  2. The physician has informed the patient of his or her intent to disclose the HIV status to the sexual partner.

According to the CMA and the Canadian Association of Social Workers, the healthcare professional should counsel the patient on possible barriers to risk reduction and should attempt to motivate the patient to disclose their HIV status or cease unsafe behaviours before reporting the situation to public health authorities (Elliot 1999). It is currently unclear whether the ‘duty to warn’ will be maintained among community-based organizations, such as AIDS service organizations.

 

Disclosure of Counseling Records

Maintaining confidentiality of discussions between patient and health or social work professional is important ethically, to maintain the dignity of the patient. This, however, is also pragmatic, as physicians and other professionals attempt to elicit information pledged to be confidential from patients and clients. "In the absence of such a pledge, there can be no assurance of candor, and in the absence of candor, the capacity to engage in effective clinical work would be impaired" (Elliot 1999). This may be especially relevant in the case of HIV/AIDS, as disclosure can have massive repercussions. However, the Supreme Court of Canada has insisted on disclosure of relevant or admissible communications between a healthcare professional and a patient unless they can be determined to be ‘privileged’ by the following criteria (Elliot 1999):

  1. "The communication must originate in confidence that it will not be disclosed".
  2. "This element of confidentiality must be essential to the full and satisfactory maintenance of the relation between the parties".
  3. "The relation must be one that in the opinion of the community ought to be sedulously fostered".
  4. "The injury that would inure to the relation by the disclosure of the communication must be greater than the benefit thereby gained for the correct disposal of litigation".

 

Partner Notification: Does it Require Disclosure?

Partner notification (or ‘contact tracing’) has been defined as "the spectrum of public health activities in which sexual and injection equipment–sharing partners of individuals with HIV infection are notified, counselled about their exposure and offered services" (Jurgens 1998). Partner notification is legislated only in Ontario, Saskatchewan, the Northwest Territories, and Yukon (Jurgens 1998).

The Southern Alberta Clinic works with Population Health to provide partner notification. Their philosophy is that HIV transmission can be reduced by early identification of asymptomatic individuals. All HIV-positive individuals are instructed to inform their sexual and needle-sharing partners of their status. When an individual is unable or unwilling to disclose their HIV-positive status to partners, Population Health will provide partner notification services, while insuring the confidentiality of the index case.

Southern Alberta Clinic nurses obtain information on sexual and needle-sharing partners at risk over the six months prior to time of seroconversion, or if time of seroconversion is unknown, from as far back as possible up to January 1978. If a patient refuses to inform their current sexual partner and high risk behavior is suspected, Population Health will inform the partner after informing the patient that this will occur. Partners notified will be given information on HIV, an HIV-antibody test, and a follow-up interview one month from testing. Partner notification does not involve disclosure, as at no time will the index case be identified to the partners contacted (http://xweb.crha-health.ab.ca/clin/sac/publiche.htm)

 

Disclosure in the Workplace

Disclosure in the workplace is of great concern to Canadians living with HIV/AIDS. The "Force for Change" labour market project showed that over 50% of employed participants had not disclosed their HIV status to their employer. The primary reason for non-disclosure was perceived or anticipated negative attitudes from employers or co-workers (Canadian AIDS Society 1998)

According to a joint study from the Canadian HIV/AIDS Legal Network and the Canadian AIDS Society, employers may (de Bruyn 1998):

  1. "Breach confidentiality regarding HIV status".
  2. "Fail to accommodate the needs of people with HIV/AIDS regarding the duties they are able to perform, the schedule and side effects of their regimen of drugs, time required for medical appointments, or leave required for temporary illnesses".
  3. "Lay off people with HIV/AIDS because of the cost of group disability insurance or group drug insurance premiums".
  4. "Tolerate an environment in which other employees harass, avoid, or ostracize people with HIV/AIDS".

Although not everyone reacts negatively when an HIV-positive person discloses their status, disclosure at work is still risky. One in five employees who disclosed in Quebec had difficulties with their employer following disclosure (de Bruyn 1998).

 

Confidentiality in Extended Healthcare Settings

"Under Canadian law, physicians and other health-care providers have a duty of confidentiality to their patients" (de Bruyn 1998). Unfortunately, preserving confidentiality and maintaining control over medical information in extended healthcare settings, such as hospitals or clinics, is difficult, if not impossible. HIV-positive individuals on lower incomes are more likely to experience breaches of confidentiality than are those with higher incomes. Higher incomes allow individuals the opportunity to seek private services. Service providers may also make assumptions based on ‘class’, of their own need for information and their client’s need for confidentiality (de Bruyn 1998).

 

Disclosure and Insurance

The insurance industry is a for-profit industry which has the power to decide who can or cannot be insured and who must pay a higher premium. Insurers, then, may exclude people with HIV/AIDS from coverage or benefits on the basis of low return on risk-sharing. Canadian human rights codes offer a defense to insurance companies such that they may exclude individuals with a pre-existing condition or handicap (including HIV/AIDS) provided that they do so on ‘reasonable grounds’. Disclosure for the purposes of health related insurance is not optional, since blood is tested and information must be sent to the insurance company (de Bruyn 1998).

 

Confidentiality and the Use of Computerized Databases

Research on individual cases of HIV and AIDS is crucial to improving medications, enhancing quality of life, and possibly finding a way to eliminate the virus. Unfortunately, the use of computerized databases in such research often leaves people living with HIV or AIDS open to breaches in confidentiality. In a University of Calgary study, the ethical implications of research from computerized databases was examined to determine the moral responsibility of the researcher.

The study found that computerization of databases has increased public anxiety regarding loss of privacy, including in cases of HIV/AIDS. The aim of the project was to "facilitate health research that gives proper respect to ethical principles, thereby increasing public comfort and reducing demands for restrictive legislation concerning access to databases" (Thurston, Burgess, and Adair 1999). They concluded that there is general agreement among researchers that research for its own sake and the convenience of database access cannot justify "the suspension of moral concerns about privacy and confidentiality"(ibid.). They recommend that researchers routinely describe in detail their methodologies surrounding maintenance of confidentiality when utilizing database information and that suggest that the moral responsibility of confidentiality increases with the sensitivity of the information involved (Thurston, Burgess, and Adair 1999).

 

The Case of R vs. Cuerrier

The most talked-about federal case regarding HIV/AIDS in recent years has been the case of R vs. Cuerrier. In 1992, Mr. Cuerrier learned that he was HIV-positive and was told that he should use condoms for sex and inform all of his sexual partners about his status. He said he could not disclose this in his small community. Following this, he became involved in sexual relationships with two different women (KM and BH), both cases involving unprotected vaginal sex. In neither case did he freely disclose his HIV status. KM discovered his status after both she and Cuerrier had HIV-antibody tests and were told to use condoms during sex. Cuerrier told KM he did not want to use condoms and if she continued to test HIV-negative, he would seek out an HIV-positive partner. They continued to have unprotected sex for the next 15 months. KM later testified that she never would have had sex with him if she had known his HIV status at the outset. BH discovered Cuerrier’s HIV status and confronted him, at which point he apologized and conceded that he should have told her. At the time of the trial, both KM and BH tested HIV-negative.

This case questioned whether or not an HIV-positive person could be held criminally liable for not disclosing their status before engaging in behaviours involving risk of HIV transmission. "The Supreme Court's decision focuses solely on the question of whether an HIV-positive person's non-disclosure of their status can be considered ‘fraud’ for the purposes of the criminal law of assault. Seven (of nine) justices on the Supreme Court heard the case. All concluded that Cuerrier's non-disclosure of his HIV-positive status could constitute fraud" (Elliot 1999).

 

Sharing Drug Injection Equipment

Though Cuerrier brought to the fore issues of disclosure and sexual contact, drug injection equipment also poses a risk for transmission of HIV. It is unclear as yet whether criminal liability in non-sexual contexts could be established, as there have been no cases brought before the courts of such situations (Elliot 1999).

 

Community-Based Organizations: A Need for Policy

Staff, Interns, Contractors, Practicum Students and Volunteers working with AIDS Calgary Awareness Association are required to sign an Oath of Confidentiality stating that they are aware of "agency policy and procedures on confidentiality and understand its intent and limitations". Confidential

information is to be protected unless disclosure is authorized or legally or professionally required

Without explicit policy such as this, community-based organizations may find themselves confronted by a legal obligation (by search warrant or subpoena, or through civil liability) to breach confidentiality. This obligation may arise if a client is charged with a criminal offense or if an organization employee failed to adhere to the common law ‘duty to warn’ someone at risk for HIV infection (the latter of these remains unsettled in Canadian law).

Some organizations may refuse to breach confidentiality, thus risking the legal consequences. In any case, AIDS service organizations should consider developing policies or protocols regarding the parameters of the counseling relationship, professional and legal obligations, and how to respond to requests for confidential information by police or prosecution (Elliot 1999).

"Some organizations may feel strongly that breaching confidentiality will undermine the trust relationship with the community they serve, ultimately damaging their efforts to prevent HIV transmission and to provide care, treatment, and support for people with HIV/AIDS" (Elliot 1999).

 

Literature Cited

Canadian AIDS Society
1998 "Force for Change: Labour Force Participation for People Living With HIV/AIDS"

de Bruyn, Theodore
1998 "HIV/AIDS and Discrimination: A Discussion Paper". Canadian HIV/AIDS Legal Network and Canadian AIDS Society

Elliot, Richard
1999 "After Cuerrier: Canadian Criminal Law and the Non-Disclosure of HIV-Positive Status". Canadian HIV/AIDS Legal Network

Jurgens, Ralf
1998 "HIV Testing and Confidentiality: Final Report". Joint Project on Legal and Ethical Issues Raised by HIV/AIDS, Canadian HIV/AIDS Legal Network

Thurston, Wilfreda, Michael Burgess, and Carol Adair
1999 "Commentary: Ethical Issues in the Use of Computerized Databases for Epidemiologic and Other Health Research". Chronic Diseases in Canada. Volume 20, No. 3

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