University of Toronto Law School Faculty Blog

Mandatory Census Doesn't Raise Privacy Concerns; Abolishing it Does

Trudo Lemmens: Is privacy really at the heart of mandatory census change?

(This commentary first appeared in a slightly different version in the Hill Times on August 23, 2010) 

Big policy decisions are always a balancing act. Nothing unusual thus when the government invokes one interest—privacy--to justify the cancellation of the mandatory long census, which serves another interest--the gathering of reliable information about Canadian citizens for the purpose of good policy making. The increased promotion of privacy could arguably outweigh the negative impact of this decision, which critics say will affect the quality of the data of Statistics Canada.

A crucial claim which has, however, not really been questioned is whether this is indeed about privacy. Invoking privacy in the context of the collection of personal data seems intuitively appealing. Yet, using it to justify the abolishing of a mandatory form reflects a fundamental misunderstanding of the concept. Worse, the proposed changes to the government census do not diminish but rather increase privacy concerns.

The concept of privacy is notoriously difficult to define. It relates among other things to the right to be let alone, the right to make decisions about one's life, the importance of having a private space, and the need to protect confidential personal information. But privacy cannot mean that we are fully free to decide whether we will give personal information to legitimate governmental agencies. Otherwise governments could not work. Our tax system, public health care, land registration, driving licenses, the judicial system, employment benefit plans, and the governmental bureaucracy in general, they all require the collection of highly personal and detailed information, often with criminal sanctions attached. Yet, no reasonable person would argue that these mandatory collections in and of themselves violate privacy.

Profs. Austin and Lemmens on Biobank Governance, Privacy, and Informed Consent

By Prof. Trudo Lemmens

Medical research is increasingly relying on biobanks, large repositories of human biological material and related health information. These can be best conceived as elaborate research infrastructures, which allow researchers, often brought together in international research consortia, to study in more detail the long-term interaction between genes, environment and life-style. Biobanks are an increasingly crucial research tool, but they also raise complex legal and governance issues, particularly related to privacy. A key challenge is the difficulty of adequately informing people who donate tissue samples and give access to personal data about the type of research that will be undertaken--often in the distant future--and what specific privacy risks are associated with it. There has been much debate about how traditional requirements of informed consent can be respected in the context of such open-ended information systems; whether informed consent should even be required; and how privacy protection can best be assured. Policy makers have taken various initiatives in this area. Genome Canada recently published, for example, a policy brief written by Timothy Caulfield and Bartha M. Knoppers to inform federal policy-makers of the various regulatory and policy options related to consent in the context of biobanks (http://www.genomecanada.ca/en/ge3ls/policy-portal/#coreAdvisory).

Lisa Austin and I have participated in some of these policy initiatives and we also added our voices to the academic debate. In two recently published co-authored chapters, we suggest that the discussion has focused too much on the question whether fully informed consent is possible when people donate biological material and give access to health information. Some of our colleagues have argued that the answer to this question is the introduction of a new form of open-ended informed consent, while others have rejected the importance of informed consent altogether. We argue that informed consent remains an important concept, but that it should be tightly connected to the issue of governance of research.