'H ave you seen Gattaca?" Steve Scherer asks me. He says it's instructive. Gattaca is a movie that depicts a dystopian world where most people are genetically perfect. The old-fashioned genetic lottery is gone. Instead, when a couple want to have a child, they select her attributes and have her created in a lab from their respective genetic strands.
Dr. Scherer has thought more than most of us about the implications of the human genome project. He's one of the world's leading geneticists, and his laboratory at Toronto's Hospital for Sick Children is busy identifying genes that contribute to brain function and behavioural development, that cause autism, epilepsy and cancer. He was 6 when men landed on the moon. That event reshaped our idea of who we are. This event is infinitely more profound.
"This a wake-up call for society that genetics will play a major role," he says.
Dr. Scherer is as informal as the black T-shirt he's wearing. He's stolen an hour to sit down with me and peek at some of the stunning array of moral issues unleashed by genetic engineering. With him is his equally accomplished colleague, Lap-Chee Tsui, who's the hospital's chief geneticist. Dr. Tsui hasn't seen Gattaca, but he, too, is uneasy. "This particular wave is moving too fast," he says. "The technology is leading us."
Take the matter of genetic testing and who has the right to know.
"Our lab has identified a gene that causes a fatal form of epilepsy," Dr. Scherer says. "Children born with this disease live a completely normal life for 10 years, then get sick and die by the age of 15 or so."
Three weeks ago, he heard from a mother whose 12-year-old child has the disease. Now she's about to give birth to a second child. If that child also carries the fatal genes, she wants to get pregnant again fast, or else she'll grow old childless. Can she have the infant tested? "Does a mother have the right to know the fate of her child?" asks Dr. Scherer. The answer isn't as clear as it might seem. Put it another way. Is it moral to raise any child in the shadow of that knowledge?
Dr. Scherer and Dr. Tsui are mapping out Chromosome 7, the location of some very potent disease genes. One of them is the defective gene for cystic fibrosis, which Dr. Tsui discovered in 1989. The gene for diabetes is there, too. The human genome project will yield a wealth of information that can be applied to disease-gene research and to the search for better treatments.
And introduce new issues of eugenics.
"In China, if you have a gene for a severe genetic disorder, they will limit your ability to have children," says Dr. Tsui, who was born in Shanghai and raised in Hong Kong. Dr. Scherer adds, "The Chinese population of the mentally retarded is about the size of the entire population of Canada." Such people are a large financial burden in a poor country. Some day, perhaps, China will forbid them from being born. Will we? Or will anxious parents do the job themselves? "People in Western culture will do anything to help their child succeed," Dr. Scherer says.
And what about Bill Clinton's reassurances that tough privacy laws will protect your genetic bar code from being read by one and all? "I think that's a joke because of private medicine." When there are fortunes to be made in pharmacogenetics, the secrets of your genes will be no more sacred than your credit record.
There's also a much more immediate privacy issue. Genetic testing automatically establishes the truth about paternity. And, for the record, about 15 per cent of us have fathers who are not who we (or they) think they are.
I thought of the disease that terrifies me most -- Alzheimer's, the incurable killer of the brain. If I were going to get it at 60, would I want to know? I ask the two geneticists if they would take an Alzheimer's test.
"No," says Dr. Tsui. "Not if there's no cure."
"You're asking the wrong person," says Dr. Scherer with a laugh. "I hate going to the doctor!" But then he says that, if it were a condition he could modify, such as diabetes, he would want to know. "Instead of getting diabetes and going blind, I could adopt a healthy lifestyle."
And what about someone who has the diabetes gene but doesn't adopt a "healthy lifestyle"? Will she be able to get health insurance? Life insurance? A job? Welcome to the future.
Dr. Scherer tells me that Gattaca is named after the four letters, G,T,C and A, that make up the entire alphabet of DNA. The other story relevant to the human genome project is, of course, Pandora's box, which, once opened, can never be closed again. It's not a perfect analogy, since only bad things were in the box, and genetic science will yield much good.
I only hope that, somewhere in those billion bits of code, Dr. Tsui and Dr. Scherer discover the gene for wisdom. E-mail: mwente@globeandmail.ca