Academic journal article Health Law Review

Substitute Decision-Makers in Privacy Legislation That Affects Health Information in Alberta

Academic journal article Health Law Review

Substitute Decision-Makers in Privacy Legislation That Affects Health Information in Alberta

Article excerpt

I. Introduction

The authority to exercise the rights and powers of the individual is a fundamental component of all health information privacy regimes. Legislative entitlements are meaningless without the ability to exercise rights or powers. Substitute or surrogate decision-making is a crucial issue not only for the individuals who are relying on surrogates, but also for the persons who are acting on behalf of individuals.

Health information is extremely sensitive information. Health conditions that disrupt mental capacity may require extensive health services and entail the accumulation of large amounts of sensitive information. Individuals relying on substitute decision-makers, such as those lacking legal capacity, are particularly vulnerable. The existence of substitute decision-making powers has far-reaching implications for individuals subject to them, as such powers could be exercised either for the benefit of said individuals, for the benefit of the ultimate decision-maker or, alternatively, for the benefit of third parties. The latter two possibilities risk violating the interests of the individual who is most in need.

Substitute decision-making authority allows a surrogate to step into the shoes of the individual. This authority creates extensive powers--essentially the exercise of all health information rights of the individual. Health information privacy legislation prescribes not only the categories of substitute decision-makers but also the rights and powers that surrogates can exercise on behalf of individuals. Health information rights and powers include the right of access, correction and amendment, as well as the right to make express wishes and give instructions. They also include the right to consent, refuse consent, or revoke consent for the collection, use and disclosure of health information, and the right to seek remedies for breaches of access and privacy.

It is acknowledged that substitute decision-making provisions do not exist in privacy law alone. Similar provisions can also be found in family law, (1) See e.g. Family Law Act, S.A. 2003, c. F-4.5. elder law, child welfare, youth criminal justice, civil litigation and administration of estates law. Furthermore, this legal nexus gives rise to many corollary issues such as the basis of authority in common law principles like parens patriae, the assessment of capacity and the criteria for consent. Such corollary issues are beyond the scope of this discussion, however. This paper will focus on the Health Information Act (HIA or the Act) (2) as the benchmark for a comparison of Alberta's substitute decision-making provisions with those of other health information privacy regimes.

II. Health Information Privacy Legislation in Alberta

Substitute decision-makers for health information are addressed in HIA in Alberta, which has now been in force since April 25, 2001; that is, for almost four years. HIA lists the categories of persons who can exercise rights or powers of individuals as follows:

       104(1) Any right or power conferred on an individual by this Act
       may be exercised
         (a) if the individual is 18 years of age or older, by the
         individual,
         (b) if the individual is under 18 years of age and understands
         the nature of the right or power and the consequences of
         exercising the right or power, by the individual,
         (c) if the individual is under 18 years of age but does not
         meet the criterion in clause (b), by the guardian of the
         individual,
         (d) if the individual is deceased, by the individual's personal
         representative if the exercise of the right or power relates to
         the administration of the individual's estate,
         (e) if a guardian or trustee has been appointed for the
         individual under the Dependent Adults Act, by the guardian or
         trustee if the exercise of the right or power relates to the
         powers and duties of the guardian or trustee,
         (f) if an agent has been designated under a personal directive
         under the Personal Directives Act, by the agent if the
         directive so authorizes,
         (g) if a power of attorney has been granted by the individual,
         by the attorney if the exercise of the right or power relates
         to the powers and duties conferred by the power of attorney,
         (h) if the individual is a formal patient as defined in the
         Mental Health Act, by the individual's nearest relative as
         defined in that Act if the exercise of the right or power is
         necessary to carry out the obligations of the nearest relative
         under that Act, or
         (i) by any person with written authorization from the
         individual to act on the individual's behalf. … 
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