Essay

Promise of miracles in the age of uncertainty

Planets full of bronzed healthy clean-imbed individuals merrily prancing through
their lives meant that the only doctors still in business were the psychiatrists,
simply because no one had discovered a cure for the universe as a whole

or rather the one that did exist had been abolished by the medical doctors.
Douglas Adams, The Hitchhiker's Guide to the Galaxy

THEY MADE ME bionic in 1988. I still don't know why. A machine, round and smooth as a flattened pebble, sits under the skin of my right breast, just below the collarbone. Its wire travels through the blood vessel to a chamber of my heart. By now, I'm told, the wire is well encased with cardiac tissue and cannot be removed. The machine itself, a pacemaker, has outlived its allotted lifespan and continues mysteriously to do something in there, like one of those spacecraft launched when you were adolescent, still surviving somehow in deep space, beeping away regardless into your middle age.

I know why they said they'd put the thing inside me. I had three cardiac arrests on the evening of May 31, 1988. The second arrest had me flat-ined, dead, for 47 seconds. The third required an injection of adrenalin. What I don't know is what the pacemaker does. Apparently, for me, nothing.

Every few years I go to have it checked. I'm supposed to go every six months but never have the time. At the clinic they sometimes find my file is missing – it's been so long – and they must rediscover what contraption I've got by placing a sensor over it. This reads the signals and tells both the model and what it's up to. I'm usually informed the pacemaker is still in order and to come back in less than a year. Underwhelmed, I go away. Forget.

 

ISN'T IT A little odd to have a sophisticated gadget in one's chest for all that time and yet no one can give a plain explanation of what it's doing? I suspect I was given this proud invention of modern cardiology as a kind of insurance policy. I don't need it and yet, because I've got it and am registered as a kosher cardiac case, everyone now has to perform the protocols of care and maintenance. It is hard to become an "unpatient". Though I try.

A more interesting question is why I died in the first place. The first arrest came late on the Tuesday afternoon as I chaired a meeting of trustees at the Australian Museum. I felt faint and nauseous and then the floor and walls of the old boardroom began to warp and ripple. I woke up cold and wet and was told I'd been thrashing like an epileptic Russian prince. An ambulance had been called.

At nearby Sydney Hospital I was laid on a bed. A young intern took my history. I couldn't resist making the odd wry joke. The doctor seemed vague about what was wrong with me but gave me a potassium pill, then left. By this time my friend and colleague Norman Swan had arrived. Norman, a doctor trained in Scotland as a specialist pediatrician, has kept more ABC staff alive and functional than anyone else in history. As I swallowed the potassium pill a ceiling of darkness came down. In the absence of the intern it was Norman who jumped on my chest and brought me back from oblivion. When I came to I said, "Does this make me a no-onger-iving national treasure?" and promptly died again.

A second pill then had a similar effect. But why? Why was I carking?

The explanation I was offered was silly. "It's a virus." So, which virus? How come? Why should it exacerbate heart block? This is a common syndrome involving an indirect electrical pulse travelling through the heart muscle to initiate contraction. A bug had stymied a bit of my circuitry and the vagal nerve sending instructions south had been compromised in the process. You sure? This to a phalanx of medicos. Well, no, they weren't.

An alternative explanation (applying Ockham's Razor) came from a chance reading of Time magazine and a list of substances banned for athletes at the forthcoming Olympic Games. You mustn't take diuretics. Why not? Risk of cardiac arrest.

I had been on a diuretic for a year or two for mild hypertension. They make you pee more. This leaches your salts. Potassium! In a town like Sydney, built on sandstone and with the softest of waters, over 40 per cent of those taking this particular diuretic are asking for trouble (despite the claimed compensatory factors included in the drug). I was pissing away my electrolytes, the ones you need to stay alive.

How could I have such spectacular symptoms, like dropping dead, and yet not be offered a neat scientific account of what was going on? This was 1988, but still about 20 years since men had first walked on the moon. Was the body still such a black box to the men in white? Are we still in the age of medical uncertainty?

 

I SPEND MY working weeks talking to the leading scientists of the world. They are the toreadors of discovery, the matadors of revealed truth. Their arguments with each other in public forum, watched and applauded by thousands, are the finest detail of apparent certainty. Their predictions are about a world in which babies are designed, cancers cured, organs farmed, drugs sent by nanorobot to the deepest crannies of your tiniest organs, remote surgery, replacement limbs and botoxed beauties aged 95.

Yet the doctor in the high street cannot fix your bad back. Or tell you why it's gone bung.

The Promise of Miracles exists in The Age of Uncertainty. As everyday people we grizzle about getting no quality time from GPs, get cross about hospital waiting lists, accept the inevitable decline of weary bodies. And yet. And yet, we take seriously claims about clones (even Raelian ones!), buying genes for Harvard
or genes for Olympic gold, eternal life and instant beauty. Millions are spent on alternative quackery while people complain about scientists playing God. Society is spooked. Some societies take refuge in
the Dark Ages.

 

SCIENCE IS FURIOUS with this disjunction between reality and remote possibility. Yet science is itself partly to blame.

My fax machine is now the enemy. Every day it pours out spam, breakthroughs unlimited, answers to everything. Without shame. Every day there's a helpful Debbie or Karen on the phone from the WishfulThinking PR company asking whether I've received their message and how soon I'd like to drop what I'm doing and join their uninhibited quest to make (even more) famous astounding Professor Marvel or Wonderdrug Panacea or Triumphal New Technique. The company needs sales, the university needs profile, the scientist needs to vanquish competitors. Debbie and Karen have never heard any of my programs. But they call me Robyn immediately as if we're in mid-tryst.

Over a year ago I received a call from medical researchers at the University of Newcastle. They had discovered that melanoma could be destroyed by injecting an infusion containing common cold virus. I drove north to see them. We recorded an interview. And where, I asked at the end, had they published their finding, which leading professional journal? In fact, they hadn't. But they had set up a company. I did not broadcast the interview (but waited until a year later when it had been published).

Every day our media are awash with claims of breakthrough. Little is said about the painstaking, deliberate, unpredictable, costly, lengthy process required to make even the most promising treatment into an acceptable part of medical practice. No wonder the ordinary citizen is bewildered.

Meanwhile these same media, full of disconnected factoids, take some of this "news", stretch it, discard the mundane, and look for Dr Frankenstein. And they find him, surrounded by shiny-machines-that-go-PING! ensconced in the well-guarded laboratory of a mighty multinational enterprise.

If the first villain of public disquiet with scientific "progress" is marketing, then the second is its near cousin, the market itself. Nearly every major advance in biotechnology, especially those that are gene-based, appears to the dyspeptic public mind to be in the interests of making money for some large corporation. Genes are patented, drugs are promoted (shamelessly), fortunes are made (and lost). Even Craig Venter, daddy of the private Human Genome Project, turns out to have used his own DNA to do the sequencing.

 

SCIENCE, HOWEVER, HAS never been the unfettered search after truth we like to imagine it was. At its modern beginnings, at the time of the Enlightenment, the struggle was to separate it from ecclesiastical influence. In the 19th century, there were patrons to please and establishments to assuage. In the 20th century, much scientific research was under the aegis of military institutions and far from the free exchange of information and ideas we like to imagine it was.

Science has always had to drag public opinion to its high frontiers. The trouble with our present predicament is that those frontiers seem to be approaching faster than ever before. We have little time to consider their implications and we cannot fathom what they mean. Are the scientists on a frolic of their own, pursuing extraordinary possibilities merely because they can? Is it all being driven by profit? In today's world that is not hard to believe. Or is this research really in the interests of the greater good? If so, why are we not convinced? Is it because so much of this science takes control of our bodies, and of our babies' bodies, beyond the point that's naturally decent? Are all these stem cells, transplants, chimeras and genetic manipulations a little too close to doing God's work for him?

One answer is that scientific control over the body is so new. Medicine has been an art far longer than it has been a science. Truly scientific medicine is really only 50 years old.

The first doctors were chimpanzees. Richard Wrangham, professor of anthropology at Harvard, has shown that chimps in the forest will select a precise number of leaves of specific plants, eat them at dawn when the stomach is empty, not chew so that active ingredients are released further down the alimentary canal and so treat ailments such as parasite infection. Other primates do the same.

It is unlikely that humans watched and copied these actions but they may well have developed early medical therapy in similar experimental ways. The pioneers of anatomy (a word meaning "cut-up") such as Galen of Alexandria in the second century AD, used animals, never humans, for their dissections. Dr Earle Hackett and Roy Porter record that Galen's formidable reputation and the closed minds of his disciples managed to keep wildly erroneous concepts about the human body unchallenged for a thousand years. Andreas Vesalius and William Harvey, both working in Padua, studied real people, mostly dead ones, and so began the revolution in understanding that made real progress possible.

Surgery, however, was still the province of barbers. The physician who came to visit, even as late as the 19th century, brought a bag of potions and a bedside manner that had as much to do with science as mad Auntie Flo. The trouble was that civilisation had brought with it plagues of indescribable ferocity. Agriculture was invented 10,000 years ago: we had to stay in one place and so the garbage tip was invented as well, a haven for vermin. Living with domestic animals brought us ever closer to new germs and with them black deaths, smallpox, influenzas and tuberculosis. The turning point in dealing with these devastations (and bubonic plague was rife in Sydney as recently as 1901) was public health measures: clean water, soap, disinfectants and closed drains.

Town planning and cleanliness were the secrets of the extending life spans of the early 20th century. The body and its workings remained mysterious. When my father, a coalminer in his early 30s in South Wales, was diagnosed with stomach ulcers just before World War II, the remedy was to put him on a milksop diet and to remove all his teeth. Fifty years later, after he'd died of consequent heart disease, two doctors in Perth would find that ulcers are caused by bacteria (Helicobacter pylori) not "stress". The renowned Dr Lewis Thomas, CEO of the Sloan-Kettering Institute in New York, called his autobiography on doctoring The Youngest Science (Penguin, 1983) because it had become such only halfway through the 20th century.

But when it did, oh boy! Antibiotics, heart transplants, IVF, DNA, cancer cures, The Pill, endoscopy, CT scans, microsurgery, bypass machines, lithium, VIAGRA! All in my lifetime. Stupendous changes in understanding the body, how it works and how it can be kept well. So much to take in, so much to worry about. Little wonder people think there's a scientific juggernaut and it is racing too fast. One lifetime!

 

THESE TRULY IMPRESSIVE achievements make it appear that everything is now known about
the body. What remains is to manipulate it for fun or financial gain. I have already implied that this is a
simplistic view.

Bodies are complicated things. So are their responses to interference. Every therapy and procedure has its downsides. IVF babies turn out to have 10 to 20 per cent more disabilities than normal ones. Children treated with gene therapy have shown greater likelihood of getting leukemia. Cloned animals become arthritic and die younger. These are not God-ike interventions, as the public may perceive them, but fallible procedures that will only gradually be improved, never perfected. Some interventions will always be impossible.

What of designer babies? With Craig Venter's genome fully transcribed what's to stop us from mapping parts of the chromosome we want to exploit and picking out, say, The Gene for Harvard, The Gene for the Wallabies, The Gene for Placido's Voice, or the Gene to be as Rich as Bill Gates?

I had an argument, a friendly one, with Professor Peter Singer, the Australian philosopher now at Princeton University in the United States. It was at the Melbourne Writers' Festival and was essentially about the privatisation of body production. He was worried that firms would one day offer parents better babies based on genetic manipulation. I agreed it would be unwelcome but was sceptical of how much could realistically be achieved beyond eye colour and height. Behaviour, after all, involves scores of genes interacting in cascades of effects over time with switches going on and off in a bewildering sequence of precise controls.

What about the gene for being gay, announced by Dr Dean Hamer in San Francisco 11 years ago? Surely that is an example of one behavioural gene that could be controlled? Not so. The claim has been severely criticised and, as you would sensibly expect, dozens of genes are suspected to be involved but no one
knows how.

Singer agrees that designer babies are a very long way off. I suspect that all but the most isolated characteristics, mostly to do with the removal of deleterious syndromes such as cystic fibrosis, will remain simply too hard. One or two failures of "design" and litigation will descend like a hoard of stampeding hyenas. Rogue outfits offshore may continue to offer little Beethovens or Britneys for sale to naive parents. But babies gone wrong are conspicuous. A Beethoven or Britney will have little chance to flourish with one arm or two noses. It's not like the foreign trade in organs.

So what should we make of even more ambitious body design in science fiction, such as in the latest novel by Margaret Atwood? She has an impressive scientific hinterland and should be taken seriously when she warns not only of better bodies but new "human" species.

The dystopia of Oryx and Crake (Random House, 2003) is set in a world ruined by human exploitation and short-sightedness. The remote descendant of Dr Frankenstein, the semi-autistic boy-genius Crake, sees sexual competition and aggression as the seat of evil and eliminates them by creating the Crakers: exquisite creatures of various colours who eat no meat. They reproduce by having the female Crakers select four lovers, who take them to the woods for three days of constant fornication. There's no jealousy. Babies mature quickly and remove the burden of parental care from the community that spends its time in pleasant rituals and benign congress. The charming, peaceful, childlike Crakers will replace humans and maybe, MAYBE, form a more civil civilisation than we have been able to achieve.

Possible? Everything is possible in fiction. But unlikely. Atwood herself provides the obvious flaws in the system. Other animals in the story have similarly been genetically manufactured (even crosses between kangaroos and sheep that offer the tractability of lambs with the resilience of roos) but rebound by having unexpected revolting qualities as well as useful ones. There be surprise monsters. As ever in nature.

Futhermore, it's possible to find beautiful human vegetarians but the limited Craker diet would require a gut five times longer than the one we have. Imagine Kate Moss with the tummy of a goat. Furthermore, Atwood gives us only a first generation let loose onto the landscape. It has yet to experience years of natural selection. When human beings invented agriculture, probably as a desperate reaction to environmental change, the quick result, apart from plagues, was a shrinking of the body by four centimetres as a result of poor nutrition.

 

ARE WE STUCK, then, with the bodies we've got? I hope so. They are the result of three and a half billion years of finetuning. Our millions of cells co-operate efficiently over a lifetime of more than 70 years, each organ doing its stuff and, what's more, doing so in the company of more micro-organisms than we have cells. Such co-ordination! Our brains constitute a set of interconnections amounting to trillions, making most computers look Stone Age. Intervening in this staggeringly beautiful and refined process is something to be done with humility, care and in the full knowledge of why you're doing so.

This requires community consent, not an atavistic even fundamentalist imposition of Godzones but more applied imagination. We need our citizens to do something humans are bad at: picturing the future. How do we want to live in 2020, 2034? Such an exercise in conjecture would be fun and would bring real science to everyone, especially to youngsters. What sort of body do you want in 20 years? How can research help? What are the acceptable risks?

The results will be more to do with the prosaic: taking exercise and eating well than genetic infusions or bodily robotics. We will discover the limitations of science, as well as its possibilities: that stem cells will not be the answer to Alzheimer's disease or stroke for many years to come; that genes offer many possibilities for therapy but perfect babies are not among them; that cloning (unfortunate term) can offer cells and organs but should never be used to make whole people because there's no point. After this kind of dialogue has been built into society we should find ourselves making choices more comfortably. But it will not be a quiet process.

The most impressive encounter I had with a body in 2003 was, appropriately, with Superman. Christopher Reeve came to Australia at the invitation of the Premier of NSW, Bob Carr, to talk about stem-cell research.

Here was a man crippled in a riding accident, turned in an instant from an icon of athletic bodily perfection into an immobile travesty. Here was someone who should have been in deepest despair, destroyed in his prime. In fact, despite his understandable depression in the months following his sudden paraplegia, Reeve set out hopefully to understand and then to promote the research needed to solve his problem and that of countless others similarly afflicted.

The man I met, and whose still, smooth hand I held, was articulate, informed and galvanised by the possibilities science was offering even now to make his body work again. He had recently taken the odd small step, moved a finger just that little bit. It will take years. But he lives in hope. Real hope.

Reeve is an actor, not a scientist. Yet his understanding is formidable. The challenge is for the community to follow in his faltering, amateur footsteps and imagine what's really possible.

Now I must arrange for someone to check my pacemaker. Or not.

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