WE NEED TO FIND A CURE FOR REPRESSIVE LAWS
June 23, 2000
ALMOST two years ago I joked in these pages that the Jewish identity resided in a mere few genes and that, when their DNA sequence was identified, I wanted to own the patent .
It is no longer a joke. It’s a deadly farce. The human genome — that endlessly echoing sequence of letters G, T, C and A — has been transcribed.
The international consortium of government-funded scientists which promised to complete the work within a decade has been overhauled by a maniacally energetic private firm called Celera.
The name means speed. All 34,000 million letters were read, according to industry rumour, by the end of March 2000.
It is now late June. The sequence is not yet publicly available, though it will be fully online later this year, promises Celera’s chief, a molecular biologist and Vietnam veteran named Craig Ventner.
Others call him ‘Darth Ventner’, the Fallen Angel, the Enemy of Science. His enemies regard him with the perfervid hatred of Bible Belt fundamentalists gazing into the heart of Satan.
Ventner’s company is alleged to be using a 1980 US Supreme Court ruling to establish its own copyright over swathes of the human genome. Enemies claim it intends to patent the essence of humanity.
The court’s decision, handed down more than a decade before reading this DNA ‘book of life’ was even a possibility, makes it legal for any company to patent living organisms.
Celera’s business practices are clouded in accusations and counter accusations. Scientists from the official Humane Genome Project at the National Institutes of Health in Maryland fear Ventner wants to identify the genes most likely to be useful in combating diseases such as cancer, and stake a claim to them.
Only when the choicest cuts have been reserved, so the conspiracy theory goes, will the ‘book of life’ be available for public reading.
Ventner regards these fears as paranoia. Celera, he says, will simply present the DNA readings to clients via sophisticated software — buyers such as pharmaceutical companies will pay for the software, not the rights to the genes themselves.
What Celera Genomics has achieved is, beyond any question, astonishing. Ventner’s personal dynamism, his obsessively competitive style and $300 million of sponsors’ cash have enabled his banks of computers at Rockville, Maryland, to translate our code of life.
Inside almost every human cell a chemical blueprint is coiled. Unravelled, this double helix, like an immense spiral staircase, would stretched out for two metres. The steps of the staircase are pairs of chemicals — Guanine, Adenine, Cytosine and Thymine. GTCA.
All the billions of letters have now been identified and set in sequence. Although we do not know what each gene does, or even which genes are junk, which genes are useful and which genes are something inbetween — junk which sometimes becomes dangerous — we do have a basic map.
You have seen these facts many times before. Perhaps they make no more sense to you now than they have done in any previous news story, documentary or opinion column. These figures and those droplets of chemicals are hard to grasp with the imagination.
So here is something all too easily imagined: a hereditary disease, first identified in the 30s, causes spongy deterioration of the brain in a significant percentage of babies born to Ashkenazi Jews.
Canavan disease is a genetic disorder which causes toxins to build up in the infant’s brain. Physical disability and severe learning difficulties, blindness, seizures, loss of muscle tones and, in many cases, an early death result.
There is no treatment. Canavan’s affects one Jewish child in 6,500. The odds might seem low, but like every other genetic nightmare threatening an unborn baby, the true ratio of chance is 50-50 — either the child escapes or it doesn’t.
Because the disease results from a gene mutation, an early pre-natal test should be possible. The disease will not be picked up on an ultrasound scan but it will register on a specific gene test.
There is no cure, but parents could at least make the choice to terminate the pregnancy.
That may seem a harsh solution to a harsh predicament but, in families where there is already a disabled child, such a test could be vitally important to the care of the children who are already born.
And the test exists. It was developed by Miami Children’s Hospital in 1997, and the hospital holds a patent.
Administrators are negotiating licenses with about a dozen labs which will be able to perform the test, and it is expected that each lab will have to pay a royalty of $12.50 to Miami Children’s for every single Canavan’s test carried out.
In other words a pre-natal test for this terrifying condition could be available in every hospital in the world. Instead it will be provided by only a handful of American laboratories, all of which must pay the patent holders every time the test is carried out.
Canavan’s disease brings untold heartache to every family it touches. But we will not be able to combat it properly until the blood-sucking patent laws are radically altered.
Now imagine that situation multiplied a million times. Imagine every hereditary disorder, from autism to schizophrenia, leukaemia to breast cancer, heart disease to diabetes, all of them hedged by the hope of a genetic cure.
And all of them denied the chance of any cure by repressive laws which exchange untold human wealth for a fistful of dollars.
Imagine that, and you are now able to imagine the nightmare of those four inscrutable letters: GTCA.
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