Chantal Bernier, National Practice Leader, Privacy and Cybersecurity, and Trevor Neiman, Dentons Canada, adapting “Pandemics in a Connected World: Integrating Privacy with Public Health Surveillance,” by Chantal Bernier, Liane Fong and Timothy M. Banks, in the University of New Brunswick Law Journal, volume 66 at page 117.
The ongoing COVID-19 pandemic illustrates and confirms the immense pressures both public and private entities face to widely collect, use and share individuals’ personal health data in order to facilitate a coordinated pandemic response.
Public health interventions include numerous forms of personal data collection, analysis and dissemination. Pandemic response plans will generally call for the active surveillance of ill persons’ symptoms and health status, reporting the identity of ill or suspected ill individuals, and the tracing of anyone who may have come into contact with an infected person.
These responses will invariably reveal details about the actual or suspected ill, as well as information about their friends, neighbours, employers, and social or religious affinity groups, including persons’ names, addresses, personal contacts, travel histories, risk factors and health records.
While public health objectives are an imperative during a pandemic, the ill or assumed ill will be quick to highlight the privacy risks of response measures. Private or public dissemination of personal health information in the efforts to contain COVID-19 have led to discrimination and restrictions on freedom.
In that light, an effective pandemic response requires commensurate safeguards to protect individual privacy. This article describes the rights and obligations of employers and employees, as well as those of health professionals and patients in relation to protecting privacy while pursuing public health objectives.
1. Privacy and pandemics management in the workplace
Privacy considerations for employers
Employers play a critical role in responding to the spread of COVID-19. Many employers are currently considering various kinds of measures to mitigate the spread of the virus and to safeguard the work environment. Employers are taking precautionary measures, such as excluding access to work premises to employees having traveled abroad and to employees showing symptoms of the virus, or limiting office access to visitors from certain regions of the world. These responses, and many similar measures, necessarily involve the collection, use and disclosure of personal information above what is normally required in the workplace.
Where employers collect, use and disclose personal information to prevent or manage the risks associated with COVID-19, employers’ actions must be guided by applicable law, including Canada’s privacy legislation. The basic rule across Canada regarding personal information is that it cannot be collected, used or disclosed without consent, unless authorized or required by law.
With this in mind, here are the main rules to follow in the context of a pandemic:
- As a preliminary rule, employers need to identify the minimal personal information they need to collect from their employees in the management of the COVID-19 pandemic. For example, additional contact information or personal travel plans may be relevant in protecting the workplace from COVID-19, and, therefore, assist in the effort to contain the pandemic. That being said, employers should limit this collection to the bare minimum necessary to fulfill that purpose. Use and disclosure of that personal information must also be minimal, limited to the strict purposes for which the information was collected.
- Employers should obtain consent for this additional information, albeit with health and safety policies that could justifiably restrict access to the workplace where the employee refuses to provide essential information.
- The form of consent obtained from employees must take into account the sensitivity of the personal information. Given the highly sensitive nature of health information, explicit consent will likely be required in most circumstances. For consent to be meaningful, employers must provide their employees with sufficient information so that they understand what they are consenting to, including the nature, purpose and consequences of the collection, use and disclosure of their personal health information. Consent will be considered express where it is the result of positive action from the individual.
- Employers should put in place dedicated security measures to prevent any loss, theft, or unauthorized access, disclosure or use of an employee’s personal information provided in the context of managing the COVID-19 pandemic. In addition, the information must be kept for only as long as it is needed to serve the intended purposes of collection. Guidelines should be developed governing the retention and destruction of the personal information when the organization no longer needs it.
Employers must also apply any special considerations unique to their business. For instance, businesses with global operations should consider the implications of cross-border sharing of personal information. While cross-border sharing of personal information may be essential in a pandemic response to trace ill employees moving between a company’s various locations or offices, the sharing of such information must be implemented with strict safeguards in place. Cross-border sharing carries high risks, as once the personal information enters another jurisdiction, it will become subject to the laws of that jurisdiction. Therefore, measures should be adopted, including regarding the use and disclosure of the personal health information, to ensure that the information will be handled in a manner that meets the standards of Canada’s privacy legislation.
Employers must also consider where they may be unable to obtain consent from employees and how they will achieve their objectives in those circumstances. Where employee consent cannot be obtained, employers may be able to rely, in a narrow set of exigent circumstances, upon exceptions to consent contained in Canada’s privacy legislation. For example, the Canada Personal Information Protection and Electronic Documents Act (PIPEDA) permits the disclosure of personal information without consent, where disclosure is required in an emergency that threatens the health or security of an individual, subject to written notification requirements to the person to whom the information relates. In addition, an organization may disclose personal information to a government institution without that individual’s consent if the institution has made a request for the information, identified its lawful authority to obtain the information, and the disclosure is requested for the purposes of administering any law of Canada or a province.
Privacy considerations for employees
As each individual must play a part in the management of a pandemic in relation to their right to privacy, employees must contend with the broadened need for their employer to collect certain personal information. Responding to the pandemic broadens the justifiable need for personal information and brings some limitation to the right to exercise consent.
The broadened need for personal information
While employees have the right to privacy in the workplace, employers may require the personal information demonstrably necessary to manage the workplace. The nature of a pandemic will generate a demonstrable need for employers to collect additional personal information from employees to ensure health and safety in the workplace. It follows that employees may be legitimately required to provide personal information and will have to comply as a matter of employee duty.
The notion of consent in a pandemic
While the general rule is that personal information, particularly sensitive information as personal health information is, cannot be collected without consent except in exigent circumstances, employees need to understand that the right to privacy may be lawfully limited where public health and safety imperatives prevail. As mentioned in relation to employers’ rights and obligations, employees must accept that the refusal to consent to provide health information necessary to the management of the pandemic in the workplace, may entail proportionate limitations of their rights as employees, such as denial of access to work premises.
2. Privacy and pandemic management in the health care system
The right to privacy also yields to public interest in the context of the efforts of the health care system in containing a pandemic. One major response to limiting the spread of infection is contact tracing, which is the practice of identifying and monitoring anyone who may have come into contact with an infected person. Specifically, the duty to disclose and the right to share personal information, including across borders, constitute lawful limitations to the right to privacy in a pandemic. That being said, the duty to minimize privacy intrusion and the duty to safeguard the personal information at hand, with due consideration for its sensitivity, are never extinguished.
The duty for patients to disclose
Taking the SARS outbreak as a precedent, the Ontario government designated SARS as a reportable, communicable, and virulent disease under the Ontario Personal Health Information Protection Act (PHIPA). Such a measure gives public health agencies the legislative authority to issue orders to detain and isolate individuals through written orders mandating quarantine.
At the federal level, the Quarantine Act also allows exceptional collection of personal information with the purpose of restricting the spread of a communicable disease. The right to privacy is limited in accordance with section 1 of the Canadian Charter of Rights and Freedoms, meaning “within such reasonable limits prescribed by law as can be demonstrably justified in a free and democratic society.” A duty to disclose can therefore be lawfully created.
Sharing personal information across borders
The privacy risks of sharing personal information across borders cannot be overstated. As the information comes in the hands of a foreign state, it also comes under the scope of that state’s laws of general application, which may or may not correspond to the level of human rights protection Canada affords. Sharing of personal information across borders, even with the imperative objective of containing a pandemic, should be minimal and circumspect to protect privacy.
While certain provincial personal health information protection laws allow cross-border sharing of personal information where the protection of health and safety require it, Canadian health authorities are bound by the World Health Organization’s (WHO) International Health Regulations. They are legally binding and apply to the international sharing of information to contain the rapid international spread of communicable diseases.
The obligation to safeguard
The general safeguarding principle of privacy law requires that personal information be protected at a level commensurate to its sensitivity. For health authorities who must collect and share personal information to respond to the crisis created by the COVID-19 pandemic, the following minimal safeguarding obligations apply:
- Sharing of personally identified information should be kept to a minimum as demonstrably necessary, resorting instead to pseudonymized information (meaning where the identifying information is replaced by a number or bar code, or other “pseudonym” which can be traced back to the individual in a protected master list), or anonymized (meaning the information can non longer be traced back to an individual) where individual tracing is not necessary.
- The personal health information shared should be kept exclusively to what is relevant to manage the pandemic. For example, even where individual tracing is necessary, not all health information relating to that patient is relevant and necessary to share in the effort to contain the pandemic.
- Information sharing agreements should be in place to govern the sharing of personal information and impose the necessary safeguards to mitigate the privacy risks inherent to the sharing of personal information.
- The sharing of personal information for the containment of a pandemic should be subject to strict prohibition, through the information sharing agreements, of the use of the personal information for any other purpose.
- Finally, enhanced technological safeguards should be implemented in the wider sharing of personal information as required in the efforts to contain a pandemic.
There is no question that effective pandemic control requires an exceptional degree of collection, disclosure and analysis of highly sensitive personal information. While we must accept unusual collection, use and sharing of personal information, the right to privacy still commands minimization of the collection, use and sharing of that information, respect for consent unless overwhelming public interest must prevail and, in all cases, protection of the information to its high level of sensitivity.