Sister: A Novel Part 22
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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 a.s.sociated with it and often it wore off too quickly. Then Professor Rosen, backed by Gene-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 sweats.h.i.+rt 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 micro-chromosome and-'
He interrupted her and the group tensed. Was he replacing grey Ponytail Man as the rude member of the group? 'Does this extra chromosome get into the germ line?' he asked.
'Yes, it'll be pa.s.sed 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 any more 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 astonis.h.i.+ng thing to behold. Like looking through Hershel'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 me now.
The film ended and I realised 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 pa.s.sion. If we played instruments or painted pictures or wrote poetry people would expect it, but scientists - we're cold, a.n.a.lytical, 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 pa.s.sion.'
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 gla.s.ses and narrow shoulders and gaucheness: a rea.s.suring boffin. 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 partic.i.p.ate in the original trial. A young research fellow at Imperial was looking for the difference between the super bright and the norm or some such nonsense. It was years ago now.'
'But the mice are on Gene-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 rehea.r.s.ed. He didn't seem 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 vigour of his words was startling and for the first time I realised that he had physicality.
We reached his office and went in.
It was a vast room, gla.s.s 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 300 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 email was callously worded, but it is correct. I don't know who did pay your sister, or anyone else, but I can a.s.sure you it wasn't us or anyone else administering the trial. I have the names and reports of the partic.i.p.ating 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 doc.u.ments 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 wonder what caused it.
'You must be in demand?' I asked, still being polite.
'Yes, very much so. The interest has been quite overwhelming. All the most prestigious universities in Europe have asked me to speak and in America all eight of the Ivy League universities have invited me to give a keynote address and four of them have offered me honorary professors.h.i.+ps. I start my lecture tour in the States tomorrow. It will be a relief to speak for hours at a time to people who understand at least a little of what I am saying rather than in sound bites.'
His words were a genie escaping, revealing I'd got him completely wrong. He did want the limelight, but he wanted it s.h.i.+ning on him at lecterns in prestigious universities rather than on television. He did want accolades, but from his peers.
I was sitting a distance away from him but even so he leaned away from me as he spoke as if the room was cramped. 'In the email you sent back you seemed to imply that there may be a link between your sister's death and my trial.'
I noticed that he said 'my trial' and remembered that on the TV he'd called it 'my chromosome'. I hadn't grasped before how much he personally identified with the cystic fibrosis trial.
He turned, not looking at me, but at his own half-reflection in the gla.s.s wall of his office.
'It's been my life's work, finding a cure for cystic fibrosis. I've literally spent my life, spending everything I have that is precious - time, commitment, energy even love - on that one thing. I have not done that for anyone to get hurt.'
'What did make you do it?' I asked.
'I want to know that when I die I have made the world a better place.' He turned to face me and continued. 'I believe that my achievement will be seen as a watershed by future generations, leading the way to the time when we can produce a disease-free population - no cystic fibrosis, no Alzheimer's, no motor-neurone disease, no cancer.' I was taken aback by the fervour in his voice, and he continued, 'We will not only wipe them out but ensure that these changes can carry on through the generations. Millions of years of evolution haven't even cured the common cold let alone the big diseases, but we can and in just a few generations we probably will.'
Why, when he was talking about curing disease, did I find him so disturbing? Maybe because any zealot, whatever his cause, makes us recoil. I remembered his speech when he likened a scientist to a painter or a musician or a writer. I found that correlation disquieting now - because instead of notes or words or paints, a genetic scientist has human genes at his disposal. He must have sensed my uneasiness, but misinterpreted the reason for it.
'You think I'm exaggerating, Miss Hemming? My chromosome is in our gene pool. I have achieved in under a lifetime a million years of human development.'
I handed in my temporary ID and left the building. The demonstrators were still there; more vocal now that they'd had some coffee out of their Thermoses. Ponytail Man was with them. I wondered how often he went on the seminar and provoked Perky Nancy. Presumably for PR and legal reasons they couldn't ban him.
He saw me and came after me.
'Do you know how they measure IQ in those mice?' he asked. 'It's not just the maze.'
I shook my head and started to walk away from him but he followed.
'They are put into a chamber and given electric shocks. When they're put in again the ones with genetically enhanced IQ know to be afraid. They measure IQ by fear.'
I walked faster but still he pursued me.
'Or the mice are dropped into a tank of water with a hidden platform. The high IQ mice learn to find the platform.'
I walked hurriedly towards the tube station, trying to find again my elation at the cystic fibrosis trial, but I was unsettled by Professor Rosen and by the mice. 'They measure IQ by fear' becoming indelible in my head even as I tried to erase it.
'I wanted to believe that the CF trial was totally legitimate. I didn't want it to be a.s.sociated in any way with Tess's murder or Xavier's death. But I was disturbed by my visit.'
'Because of Professor Rosen?' asks Mr Wright.
'Partly, yes. I had thought he didn't like fame because he was so uncomfortable on TV. But he was boastful about the lecture tours he'd been asked to give, he made a point of saying they were at the "most prestigious" universities in the world. I knew that I'd completely misjudged him.'
'Were you suspicious of him?'
'I was wary. Before, I'd a.s.sumed he'd come to Tess's funeral, and offered to answer my questions, out of compa.s.sion, but I was no longer sure of his reason. And I thought that for most of his life he'd have been seen as the science geek, certainly through school and probably through university. But now he'd become the man of the moment - and, through his chromosome, the future too. I thought that if anything was wrong with his trial he wouldn't want to jeopardise his new-found status.'
But it was the power of any genetic scientist, not just Professor Rosen, that disturbed me most. As I walked away from the Gene-Med building I thought of the Fates - one spinning the thread of human life, one measuring it, one cutting it. I thought of the threads of our DNA, coiling on their double helix, two strands in every cell of our body with our fate coded in them. And I thought that science had never been so intimately connected to what makes us human - what makes us mortal.
16.
Preoccupied after my visit to Gene-Med, I walked much of the way to the cafe opposite the art college. So many of your friends had come to your funeral, but I was unsure if any of them would turn out for me.
When I went inside the cafe it was packed full of students, all of them waiting for me. I was completely at a loss, tongue-tied. I've never liked hosting anything, even a lunch party, let alone a group meeting with strangers. And I felt so staid compared to them with their arty clothes and att.i.tude hair and piercings. One of them with Rasta hair and almond eyes introduced himself as Benjamin. He put his arm around me and led me to a table.
Thinking I wanted to hear more about your life, they told me stories ill.u.s.trating your talent, your kindness, your humour. And as they told their lovely stories about you I looked at their faces and wondered if one of them could have killed you. Was Annette with her copper bright hair and slender arms strong enough and vicious enough to kill? When Benjamin's beautiful almond eyes shed tears were they real, or was he just aware of the attractive picture he made?
'Tess's friends all described her in different ways,' I tell Mr Wright. 'But there was one phrase that everyone used. Every single person spoke of her "joie de vivre".'
Joy and life together. It's such an ironically perfect description of you.
'She had a great many friends?' asks Mr Wright and I am touched by the question because he doesn't need to ask it.
'Yes. She valued friends.h.i.+ps very highly.'
It's true, isn't it? You've always made friends easily, but you don't discard them easily. At your twenty-first birthday party you had friends from primary school. You move people from your past along with you into your present. Can you be green about friends.h.i.+ps? They are too valuable to be junked when they stop being immediately convenient.
'Did you ask them about the drugs?' asks Mr Wright, bringing my thoughts back into focus.
'Yes. Like Simon, they were adamant that she never touched them. I asked them about Emilio Codi, but didn't find out anything useful. Just that he was an "arrogant s.h.i.+t", and too preoccupied with his own art to be a decent tutor. They all knew about the affair and the pregnancy. Then I asked them about Simon and his relations.h.i.+p with Tess.'
The feeling in the cafe changed, the atmosphere heavier, loaded with something I didn't understand.
'You all knew Simon wanted a relations.h.i.+p with her?' I asked.
People nodded, but no information was volunteered.
'Emilio Codi said he was jealous?' I asked, trying to provoke a conversation.
A girl with jet-black hair and ruby-red lips, like a storybook witch, spoke up. 'Simon was jealous of anyone Tess loved.'
I wondered briefly if that included me.
'But she didn't love Emilio Codi?' I said.
'No. With Emilio Codi it was a more like a compet.i.tive thing for Simon,' replied the pretty witch. 'It was Tess's baby he was jealous of. He couldn't bear it that she was going to love someone who hadn't even been born yet, when she didn't love him.'
I remembered his montage picture of a prison, made of babies' faces.
'Was he at their funeral?' I asked.
I saw hesitation on the Pretty Witch's face before she spoke. 'We waited for him at the station, but he never showed. I phoned him, asked him what the f.u.c.k he was playing at. He said he'd changed his mind and wasn't coming. Because he wouldn't have a "special place" and his feelings for Tess would be - let me get this right - "ignored" and he "couldn't tolerate that".'
Was that why I'd sensed the heavier atmosphere when I'd asked about Simon?
'Emilio Codi said he was obsessed by her . . . ?' I said.
'Yeah, he was,' said the Pretty Witch. 'When he had that project going, the Female of the Species or some such c.r.a.p, he used to follow her around like her f.u.c.king shadow.'
I saw Benjamin give the Pretty Witch a warning look but she took no notice. 'For f.u.c.k's sake, he was practically stalking her.'
'With his camera as an excuse?' I asked, remembering the photos of you on his bedroom wall.
'Yeah,' said the Pretty Witch. 'He wasn't man enough to look at her directly, had to do it through a lens. Some of them were really long, like he was a f.u.c.king paparazzi.'
'Do you know why she tolerated him?' I asked.
A shy-faced boy who'd been quiet up to now, spoke up. 'She was kind and I think she felt sorry for him. He didn't have other friends.'
I turned to the Pretty Witch. 'Did the project stop, you seemed to imply . . . ?'
'Yeah, Mrs Barden, his tutor, told him he had to stop. She knew it was just an excuse to follow Tess around. Told him he'd be expelled if he carried on.'
'When was this?' I asked.
'The beginning of the course year,' said Annette. 'So it must have been last September, the first week. Tess was relieved about it.'
But his photographs doc.u.mented you through all of autumn and winter.
'He was still doing it,' I said. 'Did none of you know that?'
'He must have got more subtle about it,' said Benjamin.
Sister: A Novel Part 22
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Sister: A Novel Part 22 summary
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