Perfect People

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.

The nurse, Yvonne, told her the best thing to do if she felt sick was to look at a fixed point. So she stared ahead now, then glanced up for a moment at a gull that seemed to be drifting through the air above them.

‘Dr Dettore-’

‘ Leo,’ he said. ‘Please, call me Leo.’

‘OK. Leo.’ She hesitated for a moment, gathering her thoughts and her courage. ‘Leo – why is it that you are so unpopular with the press and with so many of your fellow scientists? That recent piece in Time was pretty harsh, I thought.’

‘Are you familiar with the teachings of Chuang Tze, Naomi?’

‘No?’

‘Chuang Tze wrote, What the caterpillar calls the end of the world, the master calls the butterfly.’

‘We see the caterpillar’s metamorphosis into a butterfly as a transition of great beauty, darling,’ John said. ‘But to the caterpillar it’s a traumatic experience – it thinks it is dying.’

Dettore smiled. ‘In the old days either politicians or the Pope threw scientists in jail if they didn’t like what they were doing. A little pillorying from the press is OK, I can handle that. The question I haven’t asked you both yet is: why are you doing this? I could just knock out the bad gene group for Dreyens-Schlemmer disease and your next child would be fine. Why do you folks want to take over from nature and design other advantages into your child?’

‘We only want to have the bad stuff taken out,’ Naomi said. ‘As you will understand, the pain never goes away. We couldn’t go through it again.’

‘It is very simple,’ John said. ‘Naomi and I are not wealthy; nor do we have high opinions of ourselves. We don’t think we are Dr and Mrs Beautiful or Dr and Mrs Genius, we’re people who feel we owe it to our child to do the best we can for him – or her.’ He glanced at Naomi and after a moment’s hesitation she nodded.

Looking back at Dettore, he continued, ‘You are proof that the genie is out of the bottle. You’re providing this service and there will soon be other clinics, too. We don’t want our child developing cancer or diabetes or schizophrenia – or anything else Naomi and I have family histories of. We don’t want him or her saying to us in forty years’ time that I was a scientist, I knew what was possible, that we had the opportunity to give this child a really fabulous chance in life and we didn’t take it because we were too mean to spend the money.’

Dettore smiled. ‘I have a waiting list that’s building up so fast, it’s now running at three years. I can’t give you any names, but several of the most influential people in America have been to this clinic. Some folks are jealous, some are scared because they don’t understand. The world is changing and people don’t like change. Not many people can even see too far ahead. A good chess player can see five, maybe ten moves ahead. But how far do most people’s visions extend? We’re not very good as a species at looking into the future. It’s much easier to look back at the past. We can edit out the bits we don’t like, reinvent ourselves. But there’s nothing about the future we can edit or reinvent. Most people are prisoners of the future just as much as they are prisoners of their genes. Only the people who come to my clinic know they can change it.’

Naomi walked over to the sofa and sat back down, absorbing what he was saying. She felt a small pang of hunger, which was a good sign. Starting to feel better. ‘This fifty per cent chance of rejection – if that happens, how soon before we can try again? Or if I miscarry later?’

‘Six months – the body needs that length of time to get strong again after the drugs we’ve given.’

‘And what we have paid – that allows us three attempts – three visits here? And beyond that we’d have to pay over again?’

‘I’m sure it won’t come to that.’ Dettore smiled.

‘One thing we haven’t asked you about,’ Naomi said, ‘are any possible side effects for our child.’

Dettore frowned. ‘Side effects?’

‘There’s always a trade-off in life,’ she said. ‘What you do with the genes – are there any negative effects as a result?’

He hesitated; the tiniest flicker of doubt seemed to cross his face, like the shadow of a passing bird. ‘The only thing that’s a negative, if you could call it that, is your child will have accelerated growth and maturity. He or she will grow up faster than other kids, mentally and physically.’

‘A lot faster?’

Dettore shook his head. ‘But it will be significant.’

‘Can you tell me a little bit to set Naomi’s – and my own mind – at rest about the legality of what we are doing?’ John asked. ‘We know that it’s fine here, because this ship is not subject to United States federal law – but what about when we return?’

‘The regulations are changing all the time, as different countries try to get their heads around the whole subject, and scientific and religious arguments about the ethics vary. That’s why I’m running this offshore and will stay offshore until the dust settles. You are not breaking any law by being here and conceiving your child here.’

‘And we can go back to the US freely?’ Naomi asked.

‘You can go anywhere in the world freely,’ Dettore said. ‘But my strong advice would be to keep quiet about it and avoid getting embroiled in controversy.’

‘Thanks,’ she said, looking up once more at the list of her bad genes on the screen on the wall. One tiny egg contained about twenty thousand genes but that only made up a very small part of the total DNA. The rest? It used to be called junk DNA but it was now known that most of it seemed to play a role in how these twenty thousand genes get expressed. Some of it might even make you the person that you were. Every human cell contained clusters of genes – for the colour of your eyes, for the length of your arms, for the speed at which you learned things, for diseases that would kill you.

And for the way that you behaved?

Smiling suddenly, feeling a need to lighten things up a little, she said, ‘Tell me, Dr Dett- er, Leo,’ she said. ‘On this list, with all the boxes that you want us to read through’ – and now she looked pointedly at John – ‘is there a tidiness gene?’