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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.”
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