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September 14, 2000   Genetic testing for late-onset diseases is not a simple matter



Photo of Christine Jamieson

Christine Jamieson



by Janice Hamilton

Today, young people can be tested to see whether they are at risk for developing certain genetic diseases, such as Huntington’s chorea, Alzheimer’s disease, or colon, breast or ovarian cancer later in life. With advances in the human genome project (an effort to identify all genes in the human body), the list of diseases that can be tested for will undoubtedly grow.

However, Christine Jamieson, who teaches social ethics in Concordia’s Theology Department, wants people to better understand what these tests mean medically, and their implications for the individuals who undergo them, and for society.

For example, she says, people need to understand what being “at risk” means. It does not necessarily mean a death sentence, just a greater chance of developing a certain disease. This is especially true of diseases such as cancer, in which a variety of factors play a part, but it is even true of Huntington’s chorea, a rare disease linked to one genetic trait. Some people have the gene for the disorder, but die of some other cause without ever developing its symptoms.

No policies cover genetic testing

These are the kinds of issues Jamieson has raised in a report she is preparing for Health Canada on genetic testing for late-onset diseases. This survey study, drawn from North American and European literature, will provide background research to a Health Canada panel of experts. This group will make its recommendations to the government by early 2002. Although people can already be tested for several genetic disorders, the Canadian government currently has no policies covering genetic testing for late-onset diseases.

Jamieson has already completed the first two parts of her report: an 80-page overview, and a more in-depth look at social and medical issues. She is now focusing on ethical and psychological issues, and in the spring will complete a final section on political and policy issues.

Jamieson, who has been on contract as an assistant professor for three years, has a PhD in Christian ethics from Saint Paul University, an affiliate of the University of Ottawa. She suggests her background in ethics helps her understand the broad issues surrounding genetic testing.

“One of my concerns is that the predictive value of these tests has been overemphasized,” she says, adding that the possibility of false negatives and false positives has not been highlighted.

She comments that this phenomenon is creating a new social category of the “not-yet-ill.” These are people who test positive for a genetic disorder, but are still healthy. They may find themselves subject to discrimination by employers, who may not want to invest in hiring and training them. In the United States, these people may have difficulty getting health insurance, and even in Canada, buying life insurance may present problems. These issues also bring up questions about confidentiality of test results, and about our perceptions of health and perfection.

Many people want to know whether they are at risk for disease so they can try to prevent it or plan their lives accordingly. But patients must be properly informed about the pros and cons of being tested, Jamieson continues, and not only do some physicians not take the time to do this, some are not even properly informed themselves. Some genetic counselling services are in place, but such resources will need to be expanded.

“The human genome project is a wonderful collaborative effort, but people are jumping the gun,” Jamieson concludes. “They have not yet looked at what it is going to mean, what we are going to do with this information, and whether there is a point in knowing what it reveals.”








Copyright 2000, Concordia University