Filling in the Book of Life
MARGARET WENTE
Tuesday, February 13, 2001
What is the irreducible special essence of me? Scarcely anything at
all. A few characters scattered here and there in a whole library of
books. I am 90 per cent mouse. My chromosomes are full of useless filler.
I have only twice as many genes as a worm, and more in common with yeast
and bacteria than I had previously suspected. "It's a little bit of an ego
blow," says Steve Scherer.
Dr. Scherer, a geneticist at Toronto's Hospital for Sick Children, is
one of Canada's most brilliant young scientists. Like many people who are
unlocking the secrets of life, he's constantly besieged by people who want
him to draw philosophical meaning from the deluge of information unleashed
by the Human Genome Project. His first observation is this: We human
beings should stop feeling so damn superior. Man and Mouse are more alike
than not, and the Great Chain of Being, with Mankind at its apex, is just
a silly conceit.
His second observation concerns the unity of all mankind. "All our DNA
sequences are 99.9 per cent identical," he points out. "What that means is
the vast majority of DNA variation occurred before the migrations out of
Africa. The obvious physical characteristics used to define races through
history are attributed to only half a dozen or so genes."
This optimistic theme pervades much of the commentary on the Human
Genome Project. "The mapping of the human genome could be pivotal in
promoting the concept of one race, the human race," United Nations
Secretary-General Kofi Annan says hopefully.
Unfortunately, tribal conflict also appears to be firmly imbedded in
our DNA. It seems doubtful that rational appeals to science will end
racism in our time. Instead, it's likely that the human race is about to
face new kinds of discrimination and inequality. That is the flip side to
the extraordinary gifts that genetic science will deliver.
"Because of the genome project, we are going to have many new genetic
tests available," says Dr. Scherer. "Who's going to pay for them?"
Good question, and not a hypothetical one. Two years ago, this
newspaper told the story of Fiona Webster, an Ontario woman with a
devastating family history of hereditary breast cancer. Doctors advised
her to have her breasts amputated, just in case. The test that would tell
whether she had the fatal mutation was available in the U.S. But she
couldn't afford it, and Canada's health-care system refused to pay for it.
(Ms. Webster's story has a happy ending; a private citizen paid for her
test, and it was negative.)
Soon there will be hundreds and hundreds of tests for genetic
conditions such as these, and thousands and thousands of Fiona Websters.
Who will be tested for what conditions, and how will we decide? Will we
test for early Alzheimer's if there is no cure? Would you take such a
test? Will your employer make you take it? And when someone develops a
treatment for dementia that costs $50,000 a year, who will get it, and how
will society fund the drugs for all those senile baby boomers?
Those questions are right around the corner. "The Human Genome Project
will speed up the pace by which we discover and make new drugs," says Dr.
Scherer, who's working on the chromosome that harbours the disease genes
for diabetes and cystic fibrosis. "But they'll be expensive. We'll have to
work very hard to deal with two-tier medicine and issues of access." In
other words, the march of progress will very soon demolish the health-care
system as we know it.
Then there's the matter of genetic discrimination. Last week, the U.S.
Equal Employment Opportunity Commission launched its first lawsuit
challenging genetic testing. The culprit: a big railway, which was charged
with conducting genetic tests on employees without their permission after
some of them complained of carpal tunnel syndrome and applied for workers'
compensation. Some studies say a chromosomal mutation may predispose
people to the condition. Some predictions made for genetic science are
sheer sci-fi speculation. Will we figure out how to live for 150 years?
Probably not; but our kids will probably make it to 90, with interesting
consequences for our notions of work and retirement. And some science
fiction -- human cloning, for instance -- is turning into fact much too
fast. "Human cloning is doable," says Dr. Scherer. I ask whether he
believes, as some scientists do, that it's not only doable but being done.
"Yes," he says. "I think probably it is happening now."
In the middle of our conversation, Dr. Scherer gets a package. It's
from Celera Genomics Corp., the for-profit, hypercompetitive outfit that
has thrust us humans into the future way ahead of schedule. It's the
sequence map for the entire Book of Life, all contained on a CD-Rom. Most
of the pages are still blank. But not for long.
mwente@globeandmail.ca
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