She made it sound like the opening to a Star Wars movie, and continued with gusto, “Scientists discovered that the defective CF gene was making too much salt and too little water in the cells that line the lungs and the gut, causing sticky mucus to form.”
She turned to the screen, where the child was struggling to breathe, and her voice quavered a little. Maybe it did that every time she showed the film.
“The problem was how to get a healthy gene into a sufferer’s body,” she continued. “The existing method of using a virus was far from ideal. There were risks associated with it and often it wore off too quickly. Then Professor Rosen, backed by Chrom-Med, created an artificial chromosome. It was a new and totally safe way of getting the healthy gene into the body.”
An anxious-faced young man in an Oxford University sweatshirt spoke up. “You’re saying you put an extra chromosome into every cell of the body?”
“Yes,” said Perky Nancy, starry eyed. “In treated patients each cell will have forty-seven, not forty-six, chromosomes. But it’s only a microchromosome and—”
He interrupted her and the group tensed. Was he replacing gray Ponytail Man as the rude member of the group? “Does this extra chromosome get into the germ line?” he asked.
“Yes, it’ll be passed down to future generations.”
“Don’t you find that worrying?”
“Not really, no,” said Perky Nancy, smiling. Her anodyne response seemed to mop up any hostility he might have had. Or maybe I just couldn’t see it anymore because Nancy had dimmed the lights.
On the huge screen a film began, showing the double helix of DNA blown up millions of times. I saw with thirteen other people the two faulty CF genes highlighted. And then, incredibly, I watched the faulty genes being replaced by healthy ones.
The wonder of scientific discovery, real frontiers being pushed back, is an astonishing thing to behold. Like looking through Herschel’s telescope as he discovered a new planet or Columbus’s as he saw the New World. You think I’m exaggerating? I saw the cure for cystic fibrosis, Tess, right there in front of me. I saw how Leo’s death sentence could have been rewritten. He’d be alive now; that’s what I kept thinking as she told us about telomeres and DNA chips and factory cells; he’d be alive now.
As the film moved on to footage of newborn babies, born free of cystic fibrosis, being kissed by grateful mothers and self-consciously emotional fathers, I thought about a boy who grew up, who no longer had Action Man cards for his birthday, who would be taller than I am now.
The film ended and I realized that for a short while I’d forgotten my preoccupation for the last month, or at least temporarily parked it. Then I remembered, of course I remembered, and I was glad that there was no reason for this cure to be implicated with your death or Xavier’s. I wanted the genetic cure for cystic fibrosis to be our New World with no cost or sacrifices or wickedness involved.
I thought the film had ended, but then on the screen Professor Rosen was shown giving a speech. I’d already heard it on the Net and read it printed in the papers but now it resonated in a different way.
“Most people don’t think scientists do their job with passion. If we played instruments or painted pictures or wrote poetry, people would expect it, but scientists—we’re cold, analytical, detached. To most people the word ‘clinical’ means cold and unemotional, but its real meaning is to be involved in medical treatment—to be doing something for good. And we should do that, as artists and musicians and poets do, with energy, commitment and passion.”
Ten minutes later his secretary escorted me from reception, via a bubble lift, to the top floor, where Professor Rosen greeted me. He looked just as he had on the TV and at your funeral, the same caricature wire-rimmed glasses and narrow shoulders and gaucheness, reassuringly unglamorous. I thanked him for coming to your funeral and he nodded, a little curtly I thought. We walked down the corridor together and I broke the silence.
“My brother had cystic fibrosis. I wish you’d been around a few years earlier.”
He half turned away from me and I remembered from the TV interviews how uncomfortable he had been when praised. He changed the subject and I liked him for his modesty.
“So did you find the seminar informative?” he asked.
“Yes. And extraordinary.” I was about to continue but he interrupted me without even being aware that he was doing it.
“I find the mice with high IQ the most disquieting. I was asked to participate in the original trial. A young research fellow at Imperial was looking for the difference between the superbright and the norm or some such nonsense. It was years ago now.”
“But the mice are on Chrom-Med’s film?”
“Yes, the company bought the research, the gene for that matter, for all the good it’s done them. Fortunately, genetic engineering, in humans anyhow, isn’t allowed. Otherwise we’d no doubt have glow-in-the-dark people by now or giants who sing lullabies.”
I thought that the line was borrowed or at least rehearsed. He didn’t seem like a man who could attempt any type of witticism.
“But the cystic fibrosis cure is totally different,” I said.
He stopped walking and turned to me. “Yes. There is no comparison between the genetic cure for cystic fibrosis, which treats a terrible disease, and tinkering with genes for the sake of some kind of genetic enhancement. Or freak show. No comparison whatsoever.”
The vigor of his words was startling and for the first time I realized that he had physicality.
We reached his office and went in.
It was a vast room, glass on three sides, with a panorama across London, in keeping with the rest of the boastful building. His desk, however, was small and shabby and I imagined it being moved with him from student rooms to a variety of bigger offices until it ended up incongruously here. Professor Rosen closed the door behind us. “You had some questions you wanted to ask?”
For a moment I’d forgotten any suspicions and when I remembered, it seemed ridiculous to quiz him over the payments (as I said before, a paltry three hundred pounds when the investment in the trial must have been colossal)—and in the light of what I’d seen it also seemed churlish. But I was no longer constrained by what was appropriate or polite.
“Do you know why women on the trial were paid?” I asked.
He barely reacted. “The PR woman’s e-mail was callously worded, but it is correct. I don’t know who did pay your sister, or anyone else, but I can assure you it wasn’t us or anyone else administering the trial. I have the names and reports of the participating hospitals’ ethics committees for you. So you can see for yourself that no payments are offered or made. It would be totally improper.” He handed me a bundle of documents and continued, “The reality is that if there was any money changing hands, it would be the mothers paying us rather than the other way around. We have parents begging for this treatment.”
There was an awkward silence. My question was answered and we’d barely been in his office three minutes.
“Do you still work for Imperial?” I asked, giving myself a little time to think of more important questions. But I struck a nerve; his body as well as his voice was on the defensive.
“No. I am a full-time employee here. They have better facilities here. They let me out to give lectures.” I heard the bitterness in his voice and wondered what caused it.
“You must be in demand?” I asked, still being polite.