Protecting Privacy in the Age of Genetic Information

Previous  |   Contents  |   Next

Introduction

Almost daily, we read of advances in science centred on the unravelling of the map of the human genome. Words such as “miracle” are used freely to describe these discoveries. Indeed, the possibilities of genetic research are profound and the potential benefits to human health are enormous. But to realize these benefits, researchers will need access to the DNA of thousands of people. How researchers obtain these samples and what they do with them are critical to whether these potential benefits can be achieved.

Public opinion research has consistently revealed that Canadians feel there is something very personal and very special about their genetic information. It is not just medical or health information, it is information about one’s very identity. We would do well, therefore, to be cautious in the uses we sanction for genetic information.

While Canadians are open to participation in genetic research, they guard their privacy jealously. As the CBAC's own research has revealed, they also become increasingly uneasy once they learn about the potential medical and non-medical uses to which their information could be put.

There are few who dispute the propriety of using genetic information to diagnose and treat illness, identify missing persons or solve crimes. But, as Trudo Lemmens and Lisa Austin point out in their paper entitled “Of Volume, Depth and Speed: The Challenges of Genetic Information,” the potential uses of genetic information go far beyond what many people have conceived. What is not widely known by Canadians is that there is a movement to use genetic information for purposes far removed from human health. These new uses for genetic information raise a whole new set of questions and concerns related to personal privacy. These two authors warn that, if left unchecked, actual intrusions into personal privacy could become much greater than ever anticipated, propelled by the very technology that has expanded the horizons of genetic research. From their perspective, the computer, coupled with the volume of information that can already be extracted from a single genetic sample and the speed of testing, threatens to compromise our privacy as never before. They conclude that new regulatory measures must be developed – or existing measures adapted – to protect both individuals and society as a whole.

Some of the most spectacular advances in medicine in recent decades have been obtained through DNA analysis. Indeed, part of the “promise” of genetic research is its well-established role in the early detection and, in some cases, treatment of disease. Genetic research is enabling us to unravel the mysteries of Huntington disease, breast cancer, Tay Sachs disease and some mental illnesses.

This has assisted people to make life choices, take preventive action if possible and increase monitoring to be able to identify the disease at an early stage. At the same time, fears are raised that genetic profiling could also result in their exclusion from insurance, discrimination in employment, stigmatization as members of “diseased” families, and emotional suffering – whether they ever actually come down with the disease. The challenge, therefore, is to find a way to harness this new knowledge while limiting any negative consequences.

As Eugene Oscapella argues in his paper “Genetics, Privacy and Discrimination,” the privacy issue is one that genetic researchers and policy makers ignore at their peril:

The possible use of personal genetic information against individuals may justifiably stifle acceptance of further genetic inquiry. Failure to protect privacy and prevent discrimination therefore risks greatly diminishing the potential for genetics to improve health care.¹

One of the more troubling issues raised by Oscapella is what he describes as the “rapid advance of genetic science.” He notes that existing laws governing personal health information also, sometimes explicitly, often protect genetic information used for health purposes. However, these protections are, at best, a patchwork and are “incomplete,” given many of the unanticipated issues that have already arisen from genetic science. Therein lies one of the challenges for policymakers.

For an examination of the ethical, legal and social issues associated with the growth of large-scale genetic research, the Canadian Biotechnology Advisory Committee commissioned four papers on various aspects of population biobanks, Mylène Deschênes and Geneviève Cardinal surveyed a variety of national approaches to the development of genetic biobanks. Patricia Kosseim produced an overview of relevant Canadian legislation at all levels of government. Michael Yeo studied the privacy issue as it relates to storage, retrieval and use of genetic information. Edna F. Einseidel examined public and professional views of biobanking. Drafts of these papers were presented at Genome Canada’s first annual GE3LS Symposium in February 2003. After the papers were completed, Lorraine Sheremeta then synthesized and expanded their research. When considered together, their findings are likely to heighten the concerns of Canadians.

So far, there is much more promise to genetic research and biobanking than there are actual results. Because of this, there is a temptation to dismiss or delay consideration of some of these authors’ more pointed questions. Yet, as Michael Yeo observes in his paper “Research and Biobanking: The Conflict Between Privacy and Access Made Explicit,” the tension between our thirst for knowledge and commercialization of biotechnological breakthroughs and the rights and values we share as Canadians is real and increasing.

One of the strongest messages to come from these authors is that the future of genetic research itself rests squarely on the shoulders of public confidence. As Sheremeta underlines in her synthesis paper, “The governance of biobanks is critically important because of the role it plays in ensuring accountability and in building and maintaining public trust.”² She also cautions that a failure to apply the highest scientific, legal and ethical standards will inevitably undermine public trust and confidence in scientific development and the products of such research.

Biobanking has been greatly facilitated by computer technology. As is the case with the banks where we keep our money, much of the ‘wealth’ of biobanking is stored in electronic format rather than as actual DNA samples. This has made data storage much easier and has opened up whole new vistas of research. It has also re-ignited a long-simmering debate over a range of issues centred on privacy and confidentiality, recruitment of DNA donors and informed consent, discrimination, commercialization and governance.

These are precisely the issues that the Canadian Biotechnology Advisory Committee addresses with this report as part of its mission to provide advice to policymakers.

¹ E. Oscapella, “Genetics, Privacy and Discrimination.” (2000), p.3
² Sheremeta, p. 52

Previous  |   Contents  |   Next