He was surprised at just how imposing the geneticist was in the flesh, far taller than he had imagined, a good head higher than himself, six-foot-six at least. He recognized the voice also, the disarming but assertive Southern Californian accent, from the phone conversations they had had in recent months.
‘Dr Klaesson? Mrs Klaesson? I’m Leo Dettore. Hope I’m not disturbing you folks!’
The man to whom they had handed over just about every cent they had in the world, plus one hundred and fifty thousand dollars they didn’t, gave Naomi’s hand a firm, unhurried shake, fixing her eyes with his own, which were a soft grey colour, sharp and alert and sparkling with warmth. She mustered a smile back, shooting a fleeting, horrified glance at the mess of clothes all around John, desperately wishing she’d had a chance to tidy up. ‘No, you’re not disturbing us at all. Come in,’ she said.
‘Just wanted to swing by and introduce myself, and give you a bunch of stuff to read.’ The geneticist had to duck his head as he entered the cabin. ‘Great to meet you in person at last, Dr Klaesson.’
‘And you too, Dr Dettore.’
Dettore’s grip was strong, taking charge of the handshake the way he clearly took charge of everything else. John felt a moment of awkwardness between them. Dettore seemed to be signalling something in his smile, as if there was some secret pact between the two men. Perhaps an implied agreement between two scientists who understood a whole lot more what this was about than Naomi possibly could.
Except that was not the way John ever intended it should be. He and Naomi had made this decision together from day one, eyes wide open, equal partners. There was nothing he would hide from her and nothing he would twist or distort that he presented to her. Period.
Lean and tanned, with distinguished Latin looks, Leo Dettore exuded confidence and charm. His teeth were perfect, he had great hair, dark and luxuriant, swept immaculately back and tinged with elegant silver streaks at the temples. And although sixty-two years old, he could easily have passed for someone a good decade younger.
Naomi watched him carefully, looking for any chinks in his facade, trying to read this stranger to whom they were effectively entrusting their entire future, studying his face, his body language. Her instant impression was one of disappointment. He had that aura, she had noticed in her work in public relations, that only the very rich and very successful had; some almost indefinable quality that great wealth alone seemed able to buy. He looked too slick, too mediagenic, too much like a White House candidate purring for votes, too much like a captain of industry schmoozing a shareholders’ meeting. But oddly, she found the more she looked at him, the more her confidence in him grew. Despite everything, there seemed something genuine about him, as well.
She noticed his hands. He had fine fingers. Not a politician’s, nor a businessman’s, but true surgeon’s fingers, long, hairy, with immaculate nails. She liked his voice, also, finding it sincere and calming. And there was something reassuring about his sheer physical presence. Then she reminded herself, as she had done so often these past weeks, that only a couple of months ago, beneath a photograph of Leo Dettore’s face, the front cover of Time magazine had borne the question, TWENTY-FIRST CENTURY FRANKENSTEIN?
‘You know,’ Dettore said, ‘I’m actually really intrigued by your work, Dr Klaesson – maybe we can talk about it some time over the next few days. I read that paper you published in Nature a few months back – was it the February issue?’
‘Yes, that’s right.’
‘The virtual dog genes. Fascinating work.’
‘It was a big experiment,’ John said. ‘It took nearly four years.’
John had developed a computer simulation showing the evolution of a dog for one thousand generations into the future, using a set of selectors.
‘And your conclusion was that they have become so linked with humans that as we evolve the dogs will evolve too. In effect they will grow smarter as man’s domination of the planet increases. I liked that. I thought that was ingenious thinking.’
John was flattered that a scientist of Dettore’s eminence should have read his work, let alone praise it. ‘It was really the development of a few key algorithms devoted to how overcoming epistasis is the rate-limiting step in adaptation,’ he replied, modestly.
‘And you haven’t yet run a simulation on how man will evolve over the next thousand generations?’
‘That’s a whole new set of parameters. Apart from the challenge of creating the program, there isn’t that kind of computing power available for academic research at USC. I—’
Interrupting him, Dettore said, ‘I think we should talk about that. I’d be interested in giving a donation, if that would drive it forward?’
‘I’d be happy to talk about it,’ John said, excited by the thought that funding from Dettore could make a difference to his research work, but not wanting to get sidetracked at this moment. On this ship it was Naomi who was important, not his work.
‘Good. We’ll have plenty of time over the next few weeks.’ Then Dettore paused, looking first at John then at Naomi. ‘I’m really sorry about what happened with your son.’
She shrugged, feeling the same twist of pain she always felt when she talked about it. ‘Thanks,’ she mouthed, emotion choking her voice.
‘Tough call.’ Fixing those grey eyes on her he said, ‘Folks who’ve never experienced the death of a child can’t even begin to understand.’
Naomi nodded.
Dettore, looking sad, suddenly, glanced at John as if to include him. ‘My ex-wife and I lost two kids – one at a year old from an inherited genetic disease, and one at six from meningitis.’
‘I – I didn’t know that. I’m really sorry,’ Naomi said, turning to John. ‘You didn’t tell me.’
‘I didn’t know either,’ he said. ‘I’m sorry.’
‘You had no reason to, it’s not something I go around broadcasting. We made a decision to keep that private. But—’ The geneticist opened out the palms of his hands. ‘It’s a big part of why I’m here. There are certain things in life that happen which shouldn’t happen – which don’t need to happen – and which science can now prevent from happening. That essentially is what we’re about at this clinic.’
‘It’s why we’re here, too,’ Naomi said.
Dettore smiled. ‘Anyhow, so how was your journey? You caught the red-eye from LA last night?’
‘We took a day flight and spent last night in New York – had dinner with some friends. We like eating out in New York,’ said John.
Butting in, Naomi said, ‘One of my husband’s interests is food – except he treats each course like it’s some scientific experiment. Everyone else has a great time, but there’s always something not quite right with his.’ She grinned at John affectionately.
John rocked his head defensively, smiling back. ‘Cooking is science. I don’t expect to pay for some chef’s laboratory tests.’
‘I’ll be interested how you rate the food on board here,’ Dettore said.
‘The way I’m feeling,’ Naomi said, ‘I’m not going to be able to face any food.’
‘A little seasick?’
‘A little.’
‘Forecast is bad for the next few hours, then it’s clearing – should be a great day tomorrow.’ He hesitated and there was a moment of awkwardness between the three of them. The ship lurched suddenly, and he put a hand against the cabin wall to steady himself.
‘So, here’s the plan. I just want you guys to relax tonight, have dinner in your cabin.’ He held out the envelope. ‘There’s a medical history form I need you to fill out for me, Naomi, and there’s a consent form I need you both to sign. The nurse will be along to take blood samples from you both shortly. We’ve already analysed the samples you had mailed to us and have had both your entire genomes mapped out; we’ll start looking at them in the morning. We meet in my office at ten – meantime, is there anything I can do for you?’
Naomi had made a list of a million questi
ons she wanted to ask, but at this moment with her whole insides spinning from motion sickness she had only one thought, which was trying to not throw up.
Dettore pulled a small container from his pocket and handed it to Naomi. ‘I’d like you to take one of these, twice a day with food. We know they will help epigenetically modify the foetus right at the beginning of conception.’ He smiled, then continued, ‘If there’s anything you think of you want to talk through, just pick up the phone and call my extension. See you in the morning. Have a good one.’
Then he was gone.
Naomi looked at John. ‘Has he got great genes, or a great plastic surgeon and a great dentist?’
‘What did you think of him?’ John said. Then he looked at her in alarm; her face had turned grey and perspiration was rolling down her cheeks.
She dropped the container and lunged towards the bathroom.
4
Naomi’s diary
Can barely write this. Thrown up twice now. It is three in the morning. My arm hurts from the third injection. Three lots of blood. What on earth did the nurse need three lots of blood for? She was v. sweet and apologetic, though. Everyone seems kind. John ordered a huge dinner then left it untouched, the smell of it making him sick – me too!
The cabin is vibrating because the ship’s engines are running. The nurse – Yvonne – a pleasant black woman, said when it is calm they usually just drift or drop anchor at night, but when it’s rough like now it’s more stable if they run the engines and keep some forward motion.
Phoned Mum earlier – very brief call (at $9 per minute!) to say we were here. Then rang Harriet. She’s really excited for us. Don’t know when we are going to be able to afford to pay back the $150,000 they lent us. John is in with a chance on one or two science awards and he’s putting together a book project for MIT press – although their advances aren’t exactly huge.
Feel like a fugitive – which I suppose is what we are. Weighing everything up over and over. Trying to find that point where medical ethics, the acceptable boundaries of science, individual responsibility and plain common sense all meet. It is very elusive.
John’s awake, unable to sleep, like me. We just had a long discussion about what we’re doing and how we feel about it, going over the same old stuff. And of course how we would feel if it doesn’t work – there’s a fifty per cent chance of failure. We’re both positive still. But the enormity does scare me. I guess I’m OK about it because it still hasn’t happened yet, and although we wouldn’t get our money back, there is still time to change our minds. We still have a couple of weeks in which we can do that.
But I don’t think we will.
5
On the large flat screen mounted on the wall of Dr Dettore’s stateroom office, directly facing the semi-circular leather sofa on which they were sitting, John and Naomi stared at the heading that had just appeared.
Klaesson, Naomi. Genetic defects. Disorders.
PAGE ONE OF 16 . . .
Dettore, sitting beside Naomi, dressed as before in his white jumpsuit and plimsolls, tapped the keypad on a console mounted on the low, brushed-steel table in front of them, and instantly the first page of the list appeared.
1. Bipolar Mood Disorder
2. Attention Deficit Hyperactivity Disorder
3. Manic Depression
4. Anxiety
5. Glomerulosclerosis
6. Hypernasality
7. Premature Baldness/Alopecia
8. Cardiomyopathy
9. Optic Nerve Atrophy
10. Retinitis Pigmentosa
11. Al-antitrypsin Deficiency
12. Marfan Syndrome
13. Hypernephroma
14. Osteopetrosis
15. Diabetes Mellitus
16. Burkitt’s Lymphoma
17. Crohn’s Disease. Regional Ileitis
(Cont . . . page 2)
‘I have the genes for all these diseases?’ Naomi said, shocked.
There was a tinge of humour in Dettore’s voice. ‘Yes, you have some genes that predispose you for all of them. I don’t want to scare you, Mrs Klaesson, but there are another sixteen pages.’
‘I’ve never heard of half of these.’ She looked at John, who was staring expressionlessly at the screen. ‘Do you know them?’
‘Not all of them, no.’
Naomi stared down at the thick form that lay on the table in front of her and John. Pages and pages of little boxes that needed a tick or a cross.
‘Believe me,’ Dettore said, ‘you absolutely do not want to pass any of these on to your kids.’
Naomi stared at the list on the screen again, finding it hard to concentrate. Nothing ever worked out the way you imagined it, she thought, her brain swilling around inside her head, fighting yet another bout of nausea. Her throat was parched and there was a vile taste in her mouth. She’d drunk one cup of tea and managed to force down just two mouthfuls of dry toast since arriving on the ship yesterday. The sea was calmer this morning, as Dr Dettore had forecast, but the motion of the ship did not seem to be a whole lot better.
‘What is hypernephroma?’ she asked.
‘That’s renal cell carcinoma – cancer of the kidney.’
‘And osteopetrosis?’
‘Actually, I’m quite excited to see that.’
She stared at him in horror. ‘Excited? Why are you excited to see that?’
‘It’s an extremely rare congenital condition – it’s known as Boyer’s Ossification disease – that causes a thickening of the bones. There used to be a lot of argument about whether this is hereditary or not – now through genetics we can see that it is. Are you aware of anyone in your family having had it?’
She shook her head. ‘Diabetes,’ she said. ‘I know we have that in my family. My grandfather was diabetic.’
Dr Dettore tapped a key and scrolled through the next page, then the next. The list was bewildering to her. When they reached the last page she said, ‘I have ovarian cancer in my family – an aunt of mine died of it in her thirties. I didn’t see that gene.’
Dettore scrolled back three pages, then pointed with his finger.
Gloomily she nodded as she saw it, too. ‘That means I’m carrying it?’
‘You’re carrying everything you see.’
‘How come I’m still alive?’
‘There’s a big element of lottery with genes,’ the geneticist said. ‘Dreyens-Schlemmer, which killed your son, can be carried by individuals like yourself and Dr Klaesson all your lives without harming you. It’s only when you produce a child, and the child inherits the Dreyens-Schlemmer gene from both parents, that we see the disease. Other disease gene groups that you carry can be expressed by all kinds of factors, many of which we still don’t understand. Age, smoking, environment, stress, shock, accidents – all of these can act as triggers for certain genes. It is quite possible you could carry everything you’ve seen on this list all your life and not be affected by any of the diseases they can create.’
‘But I’ll pass them on to any child I have?’
‘Ordinarily you would pass some, absolutely. Probably around half. The other half of the baby’s genes would be inherited from your husband – we’re about to take a look at his list now.’
Naomi tried for a moment to take a step back, to distance herself and think objectively. Schizophrenia. Heart disease. Muscular dystrophy. Breast cancer. Ovarian cancer. ‘Dr Dettore, you’ve identified all these disease genes I’m carrying, but are you able to do anything about them – I mean – OK, you can stop them being passed on to our child, but can you stop them affecting me – can you get rid of them from my genome?’
He shook his head. ‘Not right now. We’re working on it – the whole biotech industry is working on it. It might be possible to knock out some of them in a few years’ time, but we could be talking many decades for others. I’m afraid you have your parents to thank. That’s the one great thing you can do for your child: to have him or her born free of these.
’
Naomi was silent for some moments. It seemed so totally bizarre, the three of them on this sofa, somewhere out in the Atlantic Ocean, about to start marking ticks in little boxes, as if they were entering a magazine quiz or answering a customer satisfaction survey.
There were eighty boxes per page, and thirty-five pages, nearly three thousand questions – or choices.
The words blurred and the little boxes blurred.
‘Mrs Klaesson,’ Dettore said gently, ‘it’s very important that you really are on top of this. The consequences of what you and John decide here on this ship will impact not just on yourselves, and not even just on your child, either. You have the chance to create a child that most parents can only dream about, a child who is going to be born free of life-threatening or debilitating diseases, and, subject to what you choose, who has other genetic adjustments that are going to give him or her every possible advantage in life.’ He paused to let it sink in.
Naomi swallowed and nodded.
‘None of what you are doing will mean anything if you don’t love your child. And if you aren’t comfortable with all the decisions you are making, you could have big problems later down the line, because you are going to have to live with those decisions. I’ve turned many parents down – sometimes refunded them their money right at the last minute – when I’ve realized either they’re not going to be capable of rising to the standards their child will need – or that their motives are wrong.’
Naomi prised her hand free of John’s, stood up and walked unsteadily towards a window.
‘Honey, let’s take a break. Dr Dettore is right.’
‘I’m fine.’ She smiled at him. ‘I’ll be fine, really. Just a couple of things I’m trying to get my head around.’
She had read every word of the hundreds of pages of literature from the Dettore Clinic over the past months, studied the website – and every other website covering the topic that she could find – and ploughed through several of his published papers although, like John’s, they tended to be so technical she could only understand very small amounts. But her queasiness made it hard for her to focus her mind.