Revisiting Core Principles: Autonomy, Consent, and the Biobanking Challenge
| Author | Timothy Caulfield |
| Pages | 169-188 |
169
Revisiting Core Principles: Autonomy,
Consent, and the Biobanking Challenge
timothy caulfield*
A. INTRODUCTION
Canadian health law jurisprudence is, to a large deg ree, built on the principle of
autonomy. Rightly or not, the notion of autonomy permeates a signicant pro-
portion of health law cases. Whether the decision is about the basic principles
of consent or an analy sis of physician-assisted suicide , individual autonomy has
been a dominant theme. As such, when one thinks about the future challenges
that may be faced by the Supreme Court of Canada (), it seems logical to
start with a core principle such as autonomy.
Many scholars have questioned the paramountcy of autonomy and its place
in society. Indeed, the rise of theories such as communitarianism has been, in
part, a reaction to the continued emphasis placed on the individual’s right to
choose— the concern being that unfettered individualism “threatens the pos-
sibility of good lives.” Despite such commentary, at least in Canadian case law,
autonomy remains dominant.
In this chapter, I briey explore how the has used autonomy. I con-
sider an emerging scientic trend, the creation of biobanks, and how it might
* I would like to than k Ubaka Ogbog u, Nola Ries, the rese arch team, and the partici-
pants of the Health L aw conference (February ). I would al so like to thank
Genome Alberta a nd the for their f unding support.
Heta Aleksand ra Gylling, “Autonomy Revisited” () Cambridge uarterly of Health-
care Ethics at . “Li ke Romanticism was born as a reaction to E nlightenment and to its
ideals of reason, prog ress, and freedom of ind ividuals, so wa s so-called commu nitarianism born
out of the critique directed to one of t he basic tenets of liberalism — namely, individual ism.”
170 Health Law at the Supreme Court of Canada
challenge the traditional legal application of autonomy—particularly in the
context of informed consent to participate in research. In an era when biomed-
ical resea rch is becoming a n increasingly prom inent part of our economy, a sig-
nicant activity of government, and a focus of interests for the public, it seems
inevitable that Canadian courts will be faced with a consideration of how the
goals of science should be balanced against indiv idual interests.
ough, to date, there have been few Canadian cases dealing w ith research
issues, there are reasons to believe that new legal dilemmas mig ht come before
the courts— a point discussed below. More importantly, given the challenges
created by emerging biomedical research, Canadian society would benet from
a judicial clarication of the nature and role of autonomy in the realm of re-
search ethics. As human research participants become viewed as an increasingly
important “res ource” in research th at has undeniable scienti c (and economic)
potential, it will become tempting to allow an erosion of this core principle.
B. AUTONOMY AND THE SUPR EME COURT OF CANA DA
In the existing case law, be it at the level of the or in lower courts’ decisions,
autonomy is usually used as a means of empowering individuals and/or curbing
the authority of the state (or, at least , as a lens through which to explore the ap-
propriate reach of the state into individual lives and decision-making). e case
examples are numerous. It has been used to reinforce the importance of full disclo-
sure and the consent process, such as in the case of Ciarlariello v. Schachter where
the court emphasized the axiom that: “e requirement that disclosure be made
to the patient is based on this concept of individual autonomy.” e Rodriguez
decisions, much discussed in this collection, highl ighted the degree to which au-
tonomy involves, “at the very least, control over one’s bodily integrity free from
state interference”—a point that has emerged in numerous other decisions.
Ciarlariello v. Schachter, [] S .C.R. [Schachter]. Of course, the Canadian consent
jurisprudence expanded rapid ly aer Reibl v. Hughes (), D.L.R. (rd) (S.C.C.)
[Reibl], with cases u sually re-enforcing the autonomy in formed vision of the disclosure
obligation. In many ways , informed consent is viewed as a way by wh ich the asymmetry
in power which exists b etween physician and patient can be equa lized. See, for ex ample,
Ellen Picard & Gerald R obertson, Legal Liability of D octors and Hospitals in Canad a
(Toronto: Carswell, ) at .
Rodriguez v. Br itish Columbia (Attorney Ge neral), [] S.C.R. [Rodriguez].
See, for example, Fleming v. Reid (Litigation Guardian) (), D.L.R. (th) at
(Ont. C.A.) [Flemin g]; and Malette v. Shulman (), O.R. (d) (C.A.) [Shul-
man]. “e right to determine what sha ll, or shall not, be done with one’s own body, and
to be free from non-consensua l medical treatment, is a rig ht deeply rooted in our com-
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