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Excerpt from
"The Geneticist Who Played Hoops with My DNA"
by David Ewing Duncan

THE GENETICIST
WHO PLAYED HOOPS
WITH MY DNA
And Other
Masterminds
from the Frontiers
of Biotech
By David Ewing Duncan
DUE OUT MAY
2005
Morrow-Harper-Collins, US/Fourth
Estate (Harper-Collins), UK
© David Ewing Duncan, 2004
I’ve had to
face up to the fact that most of our society thinks of scientists as
people who are likely to do something bad. Either bad to make money for
themselves, or to cause trouble in the Frankensteinian sense. And the fact
is, scientists that I know are trying to do good for people.
Douglas
Melton
Harvard
Embryologist
It is not
possible to be a scientist unless you believe that the knowledge of the
world, and the power that this gives, is a thing which is of intrinsic
value to humanity, and that you are using it to help in the spread of
knowledge, and are willing to take the consequences.
Robert Oppenheimer
November 1945
Table of
Contents
Prelude:
The geneticist who played hoops with my DNA
1.
Prometheus/ Douglas
Melton
2.
Eve/ Cynthia Kenyon
3.
Paul/ Francis
Collins
4.
Faustus / Craig
Venter
5.
Zeus/ James Watson
6.
Puck/ Sydney
Brenner
7.
Moses/ Paul Berg
Epilogue:
What if Frankenstein’s
Monster had
Einstein’s Brain?
Notes
Prelude:
The geneticist who played
hoops with my DNA
There’s a high
probability that for Homo sapiens, the process of evolution as we
currently think about it, as natural selection, is for all intents and
purposes over. It is going to be replaced by our desire and capability to
tinker.
-- Stuart Schreiber,
Harvard geneticist
I’m playing
basketball with a Viking geneticist on a
half-court at the ends of the earth, and he is toying with me. Also
known as Iceland’s most famous geneticist, he’s dribbling a basketball in a
Reykjavik gym on a typically damp, cold day in August near the Arctic
Circle. Notorious for being rude, as well as brilliant and filled with an
infectious passion, Kari Stefansson, a descendent of the murderous Erik the
Red – an early Viking explorer and marauder – insisted that I go one-on-one.
Every day at 2:00 p.m., when
he’s not wandering the globe rustling up cash or giving talks, Stefansson
drives from his office downtown across this speck of a capital city, home to
nearly all of Iceland’s 290,000 people, to a gym that requires a retinal
scan to enter (Icelanders love gadgets). Just beyond the gym’s parking lot
the city ends and a hardened lava field begins, though this is hardly a
landmark in Iceland. Here the black rock everywhere remains raw, hardened in
waves and eddies, once lava-hot, covered only by a thin veneer of lime-green
moss. Overhead, the sky boils with immense gray-white clouds that turn
nearly black above a ridge of distant mountains where active volcanoes still
blow off steam. The land looks ripped from a primeval moment in history,
when cones spewed ash and fire and Titans roamed the Earth.
It’s a fitting place for
Stefansson to be exploring the raw ingredients of life, the nucleotides and
other molecules that he first began to study as a medical student at the
university here before moving on to the University of Chicago and then to
Harvard. There, as a medium-important neurologist, he delved into the
mechanics of multiple sclerosis and other maladies of the brain. At first,
before new technologies made deoxyribonucleic acid DNA easier to work with,
he cut open brains of persons who had died of neurological disorders. Later,
he parsed out their DNA, looking for links. But the academic approach was
too slow, so in 1996 he returned home to Iceland to start a company.
On the court Stefansson
destroys my pathetic game, despite being fifty-six years old to my
forty-four, a difference he notes everytime he overpowers me to plant a
basket. At 6’ 5”, with close-cropped white hair, a pointed beard, and biceps
that bulge out of the tight black designer T-shirts he tends to wear,
Stefansson looks as formidable as his wild-eyed Norse forebears in the
Icelandic sagas he likes to read, those hairy warriors who sailed in
flat-keeled longboats one thousand years ago, snatching women from the
British Isles and taking them to this bleak edge of the earth.
I haven’t played basketball in
years. When I finally grab the ball he flashes me a glare that Erik might
have used before hacking to death an enemy in the tenth century.
Prior to playing, we had been
talking about a test that Stefansson’s company, deCode Genetics, had just
run on my DNA, a guinea-pig experiment to check my nucleotides for genes
associated with disease. Back in the States, I had a lab extract three vials
of my blood to ship on dry ice to Reykjavik. DeCode’s technicians then
plucked out my DNA from the white blood cells and tested it against the
company’s database of genetic maladies. Do I have a genetic proclivity for
heart disease, Alzheimer’s disease, osteoporosis, anxiety? “We will tell you
if you are crazy, or if you might die of a stroke. You will become our first
American lab rat,” he had told me a few months earlier, when we met during a
biotech conference in New York.
Stefansson had promised to
reveal my results when he returned that afternoon to his office, making me
one of the first persons ever to reveal publicly so much personal
information about a raft of disease markers hidden in everyone’s genes. In a
few years, he says, these tests will be routine: a screening like a
cholesterol test that will tell us whether we might one day contract a dread
disease or die sooner, rather than later. They also might be used to tease
out genes that affect behavior, telling us whether we have a predilection
for anger, risk taking, happiness, or homicide. Yet I know this sort of
predictive genomics is still very much nascent, the information incomplete,
the connections between genes and disease or behavior murky, the forecasting
power faulty and poorly understood. But I’m willing to listen, and to
imagine the possibilities as described by this Armani Viking.
Of more immediate concern to me
is how to react if Stefansson tells me that my nucleotides may be harboring
an aberration I never suspected, a dread disease ticking inside me like a
secret time bomb ready to strike when I’m fifty years old, or seventy. A
fatalist, I don’t think much about how I might get sick or die, but I can’t
help but feel a small apprehension.
On the court I’ve got the ball
and I’m dribbling toward the basket, making a few clunky moves I remember
from years back. I whip around Stefansson; he pushes in close and I feel his
hot Viking breath on my face. I zig left; he cuts me off. I zag right, and
we crash shoulders as I push to turn a corner around him. He’s behind me,
pushing, and I start my leap, holding the ball up, eying the basket when he
blurts out, “I have your DNA results.”
“Yeah?” I say, suspended for a
moment in the air, feeling that electric rush that says this ball is going
to connect; it’s going into the damn basket.
“You are genetically
defective.”
I hesitate for all of a split second. He
jumps high and grabs the ball, twirls, and races down the court, dribbling
and flashing me Erik’s demonic smile.
I’m visiting Kari
Stefansson as part of an experiment to unlock the secrets of my own DNA. In
due course, I will find out my results. But as I watch him play, his dark
green eyes alluring and murderous, I’m struck by a simple revelation.
Stefansson in many ways is the early twenty-first century equivalent
of Erik the Red. He is a marauder and warrior, a larger than life figure who
slices through frigid waters in a longboat with an outsized passion to
conquer, to achieve glory, and perhaps to get rich, but mostly for the sheer
joy of it.
Lest we build him up too much,
Kari Stefansson is also just a man. I have seen him tired, and downcast. On
one of my visits to Iceland, the stock in his company had dipped down to
about $2.00 a share, prompting him to fret about an unwanted suitor who
might attempt a frontal assault to buy the company out from under him. The
Viking was watching his backside – though this Norseman is also a physician
who wants to alleviate suffering, if he can. Moody and stormy, he looked
depleted after a round of calls to investors and advisors, as if he had been
fighting the Furies all day and was still standing, but was exhausted by the
effort.
It seems evident
that Stefansson’s prickly, infectious
personality is crucial to his success in being a scientist and entrepreneur:
that peculiar blend of DNA and experience that makes this Viking gene master
a genius, bully, and force of nature. As he humbles me by swishing yet
another basket, I tease out this idea – that the Stefanssons of this
rarified world of scientists and entrepreneurs are driving this era of
biological discovery as much as the science itself. This is obvious, though
maybe, I think, this is a way to delve into the heart of the matter with
genetics: to tease out first what is the crux of the science, and the
implications of the discoveries for us humans, by trying to understand its
creators – the Prometheuses bringing us fire, the Faustuses taking us to
either heaven or hell, the Eves about to bite into another apple on the Tree
of Knowledge, and the Erik the Reds blustering about and trying to score big
with basketballs and nucleotides.
Here is a man who has glimpsed my most
intimate secrets, my DNA, those unique combinations of chemical compounds
that make me me: my blue eyes, a crooked left second toe, a tendency to be
far more curious than is healthy. I also have this flip in my left eyebrow
that my grandmother once called “the lick of God.” All the men in my family
for at least five generations have had this upward spike in our left eyebrow
that points straight up in the air: my great-grandfather Harry had it, my
grandfather, my dad, me, and my two sons. Genes are not the only factor; the
environment I live in also plays an enormous role: the food I swallow, the
gasoline fumes I breathe in when I fill up my gas tank, the ultra violet
rays that permeate the ozone and burn the skin on my nose. But it’s my genes
that are the basic ingredients that make me both human and unique – and I’ve
just handed them over to Erik the Red.
Stefansson’s aim in Iceland is to unravel
genetic secrets from the island’s entire population, looking for patterns in
genes that might account for diseases such as stroke and osteoporosis.
Thanks to meticulous genealogical records kept for one-thousand years in
Iceland and collected by deCode into a computerized data base they call the
Islendingabok, the “Book of Icelanders”, Stefansson can tap into what
medical and mortality details exist about the 680,000 people who have lived
on the island since the first Vikings arrived here in the ninth century.
deCode uses powerful computers to pick out how families inherited disease.
The company also has assembled another data base containing certain medical
details about modern-day patients, with consent, that pertains to diseases
deCode is studying. Iceland’s parliament, the Althing, has created an
oversight process to protect patient privacy, and to allow patients access
to their genetic test results, where it is appropriate. About 110,000
Icelanders so far have willingly handed over their DNA for the program,
which asks, for instance, patients with asthma to hand over their medical
records and their DNA to be tested for nucleotides that are anomalous when
compared to the nucleotides of the non-asthmatic population. This provides
clues to where the disease-influencing genes might be located. The company
has roughly mapped the location of several dozen suspect genes, and have
found the exact location of a few major diseases, such as stroke and
osteoporosis – news that was important enough that the discoveries landed on
the front page of the New York Times when each was announced in 2003.
So I am hardly alone in being tested by
Stefansson’s labs and computers, though what sets me apart is that I’m the
first healthy person with no family predisposition for disease to be tested
by deCode and to have my results announced publicly. I’m also not the first
person to take tests for specific genetic diseases. More and more, tests are
offered that identify genes linked to Alzheimer’s, Huntington’s, breast
cancer and other maladies. Except for Huntington’s, which has a 100 percent
“penetrance” – the rate at which people with the gene will get the disease –
most of these tests offer only the possibility that a person will get the
disease. For instance, testing positive for the apo-e4 gene, which is
associated with Alzheimer’s, a person has a two-and-a-half times to ten
times greater chance of getting the disease than a normal person. So this is
not necessarily deterministic information, but, rather, offers up
probabilities that you or I will get a disease.
These genetic tests fall under the rubric
of “personalized medicine” – which offers not only tests for genetic
predispositions to disease, but also the possibility of customized
treatments; for instance, drugs targeted to your specific genetic make-up
rather than the one-size-fits-all medications of today. Yet this is only the
bare beginning of what scientists are offering up as future possibilities in
this nascent age of genetics. You and I and our children may soon be living
in a world where damaged hearts and shattered spines are routinely
regenerated, or spare ones are regrown using stem cells; where a human egg
containing a person’s DNA can be engineered by adding and subtracting genes;
where genetic fixes or perhaps a pill can be popped that extends lifespan,
and keeps one young, fit and lean up to age 150, or 300, or longer. The
possibilities are thrilling in some cases and frightening in others,
particularly since the collective knowledge of genetics and the impact of
mucking with the basic recipes of life remain fantastically complex and
largely unknown.
This creative fire in biotechnology comes
after a half-century of biological discoveries and more recent technological
breakthroughs, combined with an unprecedented surge of funding from
government and the private sector, and supported by a society that loves the
gadgets, the medical miracles, and the standard of living afforded by modern
science, even if the pace of change sometimes makes us feel uneasy. The
outcome of this explosive moment in genetics is anybody’s guess: a brilliant
future or, if something goes terribly wrong, a nightmare. Or both. We will
cure cancer, vanquish AIDS, malaria and tuberculosis, increase lifespan to
300 years, eliminate pollution, and feed everyone on the planet. Or we will
create a monster, either inadvertently or deliberately. Maybe we’ll do it
all. I believe this is the greatest story of our time, perhaps of all time.
A species is developing the tools to redesign itself, to self-evolve in a
way Charles Darwin never imagined.
Experiments are under way to create new
forms of life. The geneticist J. Craig Venter, co-sequencer of the human
genome is creating at his nonprofit Institute for Biological Alternatives
the first synthetic life form. Working in Rockville, Maryland with the Nobel
Laureate Hamilton O. Smith, and funded in part by $12 million in grants from
the U.S. Department of Energy, Venter wants to create a simple microbe
designed to munch up carbon dioxide pollutants in power plants and to
release harmless hydrogen. This sounds wonderful, though this technology
could also be used to create organisms for more nefarious purposes such as
bioterrorism. Or one of these critters might be released into the ecosystem
for a useful purpose, only to mutate or evolve into something deadly. As a
nonscientist enthusiastic about science, I am properly awed by the
possibilities. I also wonder, at times, whether I should be afraid. I lean
more towards amazement than not, but I am skeptical, too, strongly believing
that nonscientists need to do their homework to understand the new science,
to be informed enough to be impressed, cautious, or afraid. Most of all we
need to stop being mystified, to learn enough to question intelligently and
to push our high priests of science to explain what they’re up to.
Lest we forget, periods of
explosive scientific achievement and
technological breakthroughs have always
created the potential for both miracles and horrors. DDT rid the West of
malaria-bearing mosquitoes and other pests, but poisoned birds and other
animals, including humans; electricity lights our cities and powers our
factories, but touch a live wire, and zap!; fossil fuels have provided us
with fuel to zip about in the air, and on the land and sea, but befouls
skies and causes global warming. The list goes on in the pluses and minuses
of television that educates and enervates, drugs that cure and cause side
effects, cars and airplanes that convey us places but also turn lethal if
they crash and burn. The most classic example of all occurred when the
physicists of the early 20th century found their dazzling
theories turn into not only the transistor and spaceflight, but also the
bomb. The Manhattan Project chief Robert Oppenheimer, for one, spent the
rest of his life after Hiroshima and Nagasaki trying to reconcile his
conscious for his role as a scientist in creating this awesomely deadly
weapon. “It is not possible to be a scientist unless you believe that the
knowledge of the world, and the power that this gives, is a thing which is
of intrinsic value to humanity, and that you are using it to help in the
spread of knowledge,” he said in the autumn of 1945, three months after the
bombs erupted over Japan, in what could be considered a classic statement of
a modern scientist justifying his work. Yet he added an important caveat:
“and are willing to take the consequences.”
Most scientists tell me not to worry: that
we humans have not yet destroyed ourselves or the planet, and that on
balance science has been an overwhelming force for the good. Yet others
worry that we are entering unchartered territory without really
understanding the implications. “We have to decide soon what kind of society
we want,” says the Oxford neurogeneticist Susan Greenfield, a baroness and a
member of the House of Lords, and an author who writes about the brain and
the social impact of genetics. “For instance, do we want a world where
everyone takes Prozac, uses Botox and plays with Gameboys? We could be
heading into a designer-baby world where we sit passively in front of our
screens and live in a virtual world. Do we want that?”
The other day I reread the
self-description of Victor Frankenstein in Mary Shelley’s classic, who early
in the story describes his intentions. “It was the secrets of heaven and
earth I desired to learn; and whether it was the outward substance of
things, or the inner spirit and the mysterious soul of man that occupied me,
still my enquiries were directed to the metaphysical, or, in its highest
sense, the physical secrets of the world.” Shorn of the stigma of being
spoken by Dr. Frankenstein, these words could easily describe many of the
subjects of this book,
Yet we hardly
know the scientists and others sweeping us
into this new world, the Stefanssons, Greenfields, and Venters. Their names
are mostly obscure outside of molecular biology. In part this is because
journalists tend to write articles trying to explain the intricacies of
proteomics, genetically modified organisms, RNA, transgenic animals, and
therapeutic cloning – and the ins and outs of start-ups, Initial Public
Offerings (IPOs), and roiling markets. We mention characters like Kari
Stefansson, scratching out quick, throwaway descriptions, treating them as
secondary to the science and the spread sheet. Science writers scribble
endless books on the solving of the human genome, stem cells, and cloning,
often failing to seriously delve into the phenomenon of an age that is
producing, all at once, a remarkable profusion of brilliant, quirky,
charismatic, possibly dangerous scientists whose work will profoundly impact
life itself.
Who are they? Are they megalomaniacs with
supersized egos, or individuals of high ethics and morals who will do what
one of them, Stanford’s Paul Berg, did when he was in the middle of an
experiment in 1971? Berg was creating a hybrid molecule by combining a
common bacterium with a monkey virus. He planned to insert his hybrid into
E. coli, a benign bacterium found in the stomach of nearly human on
Earth. But the monkey virus, SV40, had been shown to cause cancer in mice,
and might cause cancer in humans – or not. No one at that time knew for
sure, though they now know the virus is most likely harmless in humans. Back
in 1971, another scientist alerted Berg to the possible danger of this
hybrid molecule’s escaping his lab and infecting E. coli in the
stomachs of his lab workers, and possibly beyond, potentially unleashing a
cancer plague. This scenario was remote, but Berg could not eliminate the
risk 100 percent. So he shut down the experiment, wanting to be cautious
about the implications of what became known as recombinant DNA – now used as
a basic component of genetics and biotechnology. Would this method of using
one organism to produce the proteins of another lead to freakish disasters?
Berg took this question to a famous
conference in 1975 at Asilomar, near Monterey, California, where he and
others persuaded their fellow geneticists to cease certain recombinant DNA
experiments while safety issues were tested and guidelines for containment
of dangerous experiments could be formulated. This process led to thirty
years of recombinant DNA experiments without a single accident. Berg’s
experiments him a Nobel Prize, with Walter Gilbert and Fred Sanger in 1980.
Berg was careful, where another scientist
might have forged ahead despite the dangers. For instance, his fellow
geneticist James Watson argued forcefully against a self-imposed moratorium
on recombinant DNA work at the 1975 Asilimar conference, insisting that the
process could remain contained and safe in the lab, and that a moratorium
would frighten the public and might lead to a ban by the government. (This
nearly happened.) Personality played a critical role in this debate between
Berg and Watson. The science emanates from their minds, from their personal
stories, but also from who they are: their hopes and fears; their humility,
their arrogance, and their ambition that drives them forward into
discoveries and dictates how they react to the possibility of miracles, and
of disasters.
“Science seldom proceeds in the
straightforward logical manner imagined by outsiders. Instead, its steps
forward (and sometimes backward) are often very human events in which
personalities and cultural traditions play major roles.”
This comes from James Watson, co-discoverer of the double helix structure of
DNA in 1953 and an obnoxious, dazzling personality himself. The science
historian and journalist Horace Freeland Judson, author of The Eighth Day of
Creation, remarks that the personality of scientists “has always been an
inseparable part of their styles of inquiry, a potent if unacknowledged
factor in their results. Indeed, no art or popular entertainment is so
carefully built as is science upon the individual talents, preferences, and
habits of its leaders.”
“The whole idea that science is conducted
by people working alone in rooms and struggling with the forces of nature is
absolutely ridiculous,” says Sydney Brenner, a pioneer of molecular biology
famous for talking incessantly with colleagues to tease out ideas. “It is a
social activity of the highest sort.”
Why is this important? Because, as Harvard
biochemist Stuart Schreiber once told me over coffee, his eyes magnified
through thick, wire-rim glasses wrapped around a bald head that looks both
thuggish and hip: “There’s a high probability that for Homo sapiens,
the process of evolution as we currently think about it, as natural
selection, is for all intents and purposes over. It is going to be replaced
by our desire and capability to tinker.”
There is the fiery-tempered and
temperamental Watson, who in his midseventies still keeps pinups of busty
young women in his office close to his Nobel medal. An atheist who believes
the double helix proves that God does not exist, Watson has strong views
about everything from stem cells to his belief that genetic flaws in
behavior as well as disease should be fixed.
There is Craig Venter, a stormy renegade
with the gravitas, ego, and devilish brilliance of Faustus, though he also
has a cornball sense of humor. In the late nineties, he took on the
scientific establishment during the Human Genome Project and succeeded in
getting the job done faster and, at least according to Venter himself,
better. He ranges about like a junkyard dog snarling and laughing as he
brilliantly upsets applecarts. Venter restlessly sails the seas in his
yacht, Sorcerer II, collecting microbes from the oceans to sequence
genetically, while back in his lab in Maryland he leads a team creating
synthetic life forms.
And then there is Francis Collins, the
can-do Boy Scout of molecular biology with a steely resolve and intense
competitiveness. Chief of the National Institutes of Health genomics
programs, he is a born-again Christian and codiscoverer of the gene for
cystic fibrosis who went head to head with Venter during the race to
sequence the human genome. Collins headed up the band of stalwart
genehunters who pursued this nearly $3 billion quest with a religious zeal,
proselytizing its benefits and fighting to keep the DNA they sequenced free
and publicly available.
Others you will meet in these pages are
working to create new life or to extend it, to grow new organs using stem
cells, to bioengineer genes – and, in the case of the former Soviet
bioweapons expert Ken Alibek, to snuff out the life of his former nation’s
enemies when he was working for the secret USSR bioweapons program in the
seventies and eighties.
When I set out to write this book, I
experimented with several methods to describe the role of personality in
science. In the end, I chose and expanded on a strategy used with delightful
effectiveness by Lytton Strachey in his 1918 Lives of Eminent Victorians.
Insisting that too much material existed on the recently finished Victorian
age to make sense of it in a single book, he picked out four representative
figures to profile, among them Florence Nightingale and General Charles
Gordon. He described his method as dipping a bucket into the vast ocean of
material on his subject, “which will bring up to the light of day some
characteristic specimen, from those far depths, to be examined with a
careful curiosity.”
I, too, have chosen a few representative
people, though in this book I’ve added to Strachey’s idea an element that he
would have understood. He chose characters specifically to point up both the
grandeur and the flaws of figures whom his parents’ generation had revered
and worshiped as heroes and geniuses. He elevates them to godlike status by
treating them as standard-bearers of the Victorian era, only to reveal them
as all too human. Yet they remain exalted throughout as forceful stories and
symbols of the glories and disasters of their time. I have chosen nine
scientists with the same emphasis in mind, but with an added element that
defines a major difference between our era and Strachey’s. Today, we don’t
need to reduce heroes of a former generation to mere humans. In this age of
reductionism, that happens as a matter of course. I have taken these very
human, and therefore flawed individuals and assigned them each a mythic
status by assigning them a character from myth, fiction, or history –
Prometheus, Eve, Zeus. Not because I consider these scientists gods or
demigods, but because I believe that to appreciate these figures whose work
is so critical to the future of life accurately it is useful to see them
through the lens of stories, myths, and characters that have endured for
centuries as devices to understand and absorb the import of major moments in
human history.
I agree with Paul Berg that as we move
forward with science we must be cautious. Scientists need to be keenly aware
of not only potential dangers, but the ethical and social impact of their
discoveries. Yet I also believe that many of the discoveries and
possibilities will happen regardless of what society thinks. As in splitting
the atom, once the knowledge exists, the science will find a way to happen,
possibly in secret in countries where neither ethics nor the public’s fears
much matter. This makes it even more crucial that this science be allowed to
go forward while being closely watched, with appropriate safeguards.
Back in Kari Stefansson’s office, I’m
reminded of why I have a personal stake in understanding this Icelandic gene
master. We’re sitting in deCode’s new building, a blond wood, brick, and
glass palace rising on the edge of Reykjavik like a gigantic piece of
Skandia furniture. This in a city of mostly squat, functional, wood-slate
buildings that seem hunched over, as if holding their heads down in a storm.
Rain does fall here frequently, though the nearby Gulf Stream usually keeps
the temperature above freezing, even in the winter.
Inside deCode, three towers containing
labs, computers, and offices are connected by a glass-enclosed atrium four
stories high, an aery and expansive space crisscrossed by open bridges
between the towers. Hanging down from the ceiling, over the lunchroom, a
gigantic model of a double helix turns slowly, picking up the dull, gray
light from outside like an elongated disco ball. In one tower a
supercomputer that can process a person’s entire genetic code in twenty
minutes.
Stefansson’s office suite is across a
bridge from the spinning DNA model. His large windows overlook the old
Reykjavik airport, and the vast sweep of lava fields and mountains. He’s
wearing his trademark tight black T-shirt and is preparing to drink two
glasses of a Pepto-Bismol-colored drink he says is a protein supplement. I
see Yeats’s Ghosts and the NASDAQ Rule Book, among other
volumes, in his bookcase. He’s about to tell me the results of one of the
tests run on my DNA.
KS: The DNA from you is, of course, a scary
substance.
DD: I have friends who would agree.
KS: I’m sure. One of the things we did was
that we looked at the genes that confirm a stroke. We have established that
you have a series of genetic markers that give you something like a two to
seven times greater risk for developing a stroke than if you don’t. You have
this entire haplotype [inherited sequences of DNA that cause specific
traits] so you probably have three times the risk. If this turns out to be
the case in the American population, you are genetically predisposed to
stroke.
DD: Oh, hmm. Stroke? But I’ve had no stroke
in my family, other than my grandmother when she was eighty-three years old.
Doesn’t my own family history weigh in here?
KS: The only thing you have done is to
inherit a predisposition. What does that mean eventually? It means that if
you stay in a certain environment, or if you are born in a certain
environment, you will develop stroke.
DD: This is because most diseases are a
combination of mutated genes and the environment—that is, the environment
can trigger diseases, or not?
KS: Yes.
DD: But this isn’t good news for me. One
day I’ll be watching a movie or walking down the street, and, suddenly, I’ll
go limp with a stroke.
KS: Maybe, but here’s the beauty of the
genetic profiling. It’s not going to lead to a genetic determinism like
that. You are not going to develop stroke, all right? You now know that you
have three times the possibility of the average individual to develop
stroke. So you have a strong incentive to take measures to prevent stroke.
One of them is to make sure that you don’t have high blood pressure; one of
them is that you will not smoke. One of them is you will drink alcohol only
moderately, because intake of large amounts of alcohol, binges, increases
dramatically the probability that you will develop a stroke.
DD: But this genetic profile for stroke has
not been tested for Americans. You’ve just tested Icelanders. Right?
KS: Before you can get too excited as an
individual, you have to do a clinical trial in the population where you can
use it, like in the American population. But this is a fairly interesting
example of how genetic profiling is going to impact the delivery of health
care.
DD: How common is this stroke gene for
Icelanders?
KS: In Iceland, this is a haplotype that
you find in about thirty percent of patients with stroke. You find it in
about fifteen percent of controls [those without stroke]. And then you say,
“Wow, fifteen percent of controls with no stroke.” But this is an
inheritable predisposition. We know this from our genealogical data. Of
these fifteen percent, a large percentage will eventually develop stroke.
But most of these people carrying this haplotype will not develop stroke.
DD: Those odds still makes we want to go
and have a drink.
KS: You cannot drink anymore.
DD: Did you find out anything else about my
DNA? Or do I want to know?
KS: We tested your ancestry to see if the
population data from Iceland is relevant to you. You told us your ancestors
came from Scotland. In the Icelandic Sagas, they said that Iceland was
settled by Norwegian Vikings who stopped in the British Isles and picked up
slaves and women, in Ireland and maybe Scotland. And we decided to test you
by looking at your mitochondrial polymorphisms [mitochondrial DNA that
exists in each cell, separate from the double helix of human DNA –
polymorphisms are DNA in an individual that are different from the norm].
Remember, mitochondria is passed from mother to offspring. Then we looked at
your Y chromosome—these both are fairly good measures of paternal and
maternal lineage. When we looked at this, it turns out that when we compare
it to all of Europe, about seventy percent of Icelandic mitochondria are
Celtic.
DD: The Celts being Irish and British,
among others.
KS: Yeah, and about seventy percent of
Icelandic Y chromosomes are Norwegian. So it looks like Iceland was settled
by Norwegian boys who grabbed British girls. This is important when it comes
to your mitochondrial DNA, because if we look at the mitochondrial sequence
number one, that people look at mostly for ancestry, we find out that you
have a haplotype that is characteristic for Europeans. However, when we look
at region two, there is this very rare haplotype found only in Iceland and
the north coast of the British Isles. We found this haplotype in you.
DD: Uh-oh, then this stroke gene is
relevant to me.
[Stefansson calls someone on the phone]
KS: [Into the phone.] I’m out of coffee and
I’m in a desperate need because I’m talking to a very boring fellow. [To me]
My eighteen-year-old daughter would have said, “boring dude.”
That night, I
meet Stefansson for drinks at an Italian
restaurant that served, among the usual pasta and veal, horse meat,
apparently an Icelandic specialty. After drinking enough red wine to give me
a stroke for sure, we walk up the main drag of Reykjavík—there is only one,
though the bars, clubs, and restaurants are as sophisticated as any in the
world. Icelanders travel incessantly and take
back music, art, dancing—and genetics—from
elsewhere, integrating with their own sensibility.
In one bar heads turn when Stefansson walks
in. He’s a rock star here, the second most famous Icelander after the pop
singer Björk. He towers over most people and is known by everyone. I step
over to the bar to order beers, and two Icelandic women say hello. One of
them says she is in love with Stefansson, the other is annoyed with him,
because, as many Icelanders did, she bought deCode stock and watched it
tumble when biotech stocks took a nose dive. Stefansson comes over and is
sullen—he’s had a long day, but we drink until three a.m. As he says good
night—and it’s still light out—Stefansson tells me that drinking tonight
will kill me, that I’ll have a stroke by morning. I walk home through the
eerie lightness, with the streets slick with dampness in the air, and the
distant volcanoes black and steaming. I wonder whether I should believe him
and ponder the bio luminaries I am talking to about bioengineering humans,
extending life, and regenerating hearts and brains, wondering, Can they be
trusted?
Emerson wrote that
every age has its geniuses, its masterminds who propel humanity in a new
direction, for good or evil – though of course, he said, you need
circumstances to bring them out. I believe that the time is now. The
circumstances are here. The masterminds are in place. The Prometheuses are
bringing in the fire, the Florentines are carving Davids, Faustus is talking
to the devil, and the Los Alamos boys are building the bomb.
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