Protecting Privacy in the Age of Genetic Information

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Preface

Advances in genetics are often hailed as the first step in finding a treatment or cure for serious diseases or conditions. Many announcements of such advances point out that it may still be years, if ever, before any therapy will be available to patients. Despite this reality, there is a sense that these advances in genetics will ultimately result in many health benefits. This perception may well encourage people to participate in genetic research as a way of bringing those projected benefits closer. While the willingness of individuals to participate in genetic research is laudable, concerns have been raised about possible violations of the privacy rights of these individuals. Should genetic information be treated like other medical information, or does it have characteristics that make it unique? Should it be protected in some circumstances, but made available in others? The inappropriate release or use of genetic information could lead to genetic discrimination, which might take the form of rejection for employment, loss of credit, insurance, eligibility for pensions, or even discriminatory treatment in the application of government social policy. The unwanted sharing of genetic information could also cause rifts in families between members who want to know if they are at risk for a certain genetic disease and other members who wish not to know. Above all, the promise of genetic research to improved health may be jeopardized unless privacy and discrimination issues are addressed; unless people are satisfied that their information will be appropriately protected, they will not participate.

From the time it was formed, the Canadian Biotechnology Advisory Committee (CBAC) recognized privacy issues related to genetic information as an area of public concern. In 2000, CBAC commissioned two papers, one to look at the pace of genetic research and its implications and the other to consider the potential for individuals to be discriminated against on the basis of their genetic information. Two years later, the Committee asked a team of legal experts, ethicists and researchers to probe deeper in order to examine the legal, ethical and social implications of large-scale population genetic research and information storage. Drafts of these papers were presented at a half-day workshop session at Genome Canada's first annual GE3LS Symposium in February 2003. Once the papers were finalized, a synthesis was prepared.

With this publication, consisting of the two background papers and the synthesis paper, CBAC provides background and some possible answers, informed opinion and recommendations to guide legislators and others as they grapple with these issues. The first paper explores the possible uses of genetic information, while the second examines some of the legal ramifications of those uses. The third paper revised issues related to the establishment of large collections of genetic information (“biobanks”) intended to be representive of a general population. This paper summarizes legal and social issues arising from research using these biobanks and describes the views of researchers, health professionals and the general public concerning biobanks. It also proposes a framework for ensuring that the establishment of population biobanks in Canada provides both benefits for Canadian society and privacy protection for the individuals whose genetic information is included in them.

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