On the eve of his 69th birthday, Craig Venter looks on, amused, as his digital doppelganger shuffles from foot to foot. Venter’s white-bearded avatar is the star of an iPad app being demonstrated to me by his head of informatics, Scott Skellenger. Dressed in jeans and a grey V-neck T-shirt, Venter’s little digital archetype can be made to walk, even dance.
His wife (and publicist) Heather sits within earshot in his huge office in San Diego. Venter drolly remarks that he originally wanted to be able to remove his avatar’s heart “Aztec-style” or pluck out its brain for inspection and introspection. Instead, arranged on the app around the fidgeting mini-Venter is a solar system of options – brain segmentation, connectivity and anatomy, and intracranial arteries. I study a scan of Venter’s hips and spine and peer inside his head. Colours reveal the different segments of his brain. I can clearly see his white and grey matter. “I have the brain of a 44-year-old,” he says. Another touch and I can inspect Venter’s genome—which maps his ancestry to the UK—his gait, even his individual footsteps captured for posterity by a smart floor. Biotech’s biggest entrepreneur has been decomposed into binary.
His latest venture, Human Longevity, Inc., or HLI, creates a realistic avatar of each of its customers—they call the first batch ‘voyagers’—to provide an intimate, friendly interface for them to navigate the terabytes of medical information being gleaned about their genes, bodies and abilities. Venter wants HLI to create the world’s most important database for interpreting the genetic code, so he can make healthcare more proactive, preventative and predictive. Such data marks the start of a decisive shift in medicine, from treatment to prevention. Venter believes we have entered the digital age of biology. And he is the first to embark on this ultimate journey of self-discovery.
At the turn of the millennium, at a ceremony at the White House involving President Clinton and UK prime minister Tony Blair, Venter had unveiled his first draft of the human genome, a mosaic of DNA from three women and two men. It followed a bitterly fought and ill-tempered race between his company, Celera, and a publicly funded international consortium, represented at the globally televised event by Francis Collins.
Both sides presented what the president called the first survey of the entire human genome, marking a major milestone in Big Biology. That sultry day in June 2000 saw a brief pause in hostilities over each other’s methods and results, in which Venter had accused the public effort of being inefficient, cumbersome and self-serving, and the consortium had attacked Venter as a self-promoting egomaniac who wanted to patent the human genome and, for a time, make the sequence available only to paying customers.
Science was the real winner, of course: the competition had accelerated the genome programme by years. Later it emerged that the largest contribution to Venter’s genome came from Venter himself and, a few years later, he completed the job to become the first human being to gaze upon his entire complement of DNA, all 6 billion chemical units.
‘Maverick’ and ‘controversial’ are among the labels that have stuck to Venter from the last century. Today, his rivals from the furious phase of the genome race prefer to downplay his contribution to history, rather than continue to attack him as the bad boy of biology. A recent commentary in the journal Nature, entitled ‘Human Genome Project: twenty-five years of big biology’, does not mention Venter at all. Its coauthors include Collins, now Director of the US National Institutes of Health, and Jim Watson of double-helix fame, who once, notoriously, likened Venter to Hitler. Yet the article was accompanied by an uncredited picture of Venter’s 1994 laboratory.
Venter has shrugged off the criticisms over the years. Watson has buried the hatchet—he even paid a visit to HLI last October. Yes, Venter says, he would be lying if he did not admit it is “sad and annoying” being airbrushed out of history, but “the only way they would have been successful would be if I retired”. In the 15 years since the genome brouhaha, Venter has continued to coauthor papers in leading journals, covering topics from genome transplants to the myriad sequences of microscopic marine life. He now has the largest genomics sequencing facility of its kind, and is on a mission to change medicine. “[I’m] not worried at all about how I will be remembered.”
In his HLI office, Venter’s eyes gleam as he shows me a picture of an event he attended in a sports arena with thousands of high school kids “excited about science and medicine”. Unlike the old guard, he says, they won’t be so hard to convince about where his research is taking us, pointing out that textbooks now describe how he shared the glory of sequencing the human genome 15 years ago.
His critics call him arrogant but, having talked to him on and off for more than two decades, I think Venter has earned the right to be bullish about his abilities to build a biotech venture from scratch. Yes, he can be laddish, and yes, he maintains a surfer dude’s disrespect for governments and bureaucracy. He can also be blunt. But over the years I have found him (usually) affable and often very funny. The more you meet him, the more evident his complexities become. It’s too simplistic to say he is egotistical: more that he knows what he wants and, importantly, how to motivate others to help him get it.
His self-belief, which is hardly unusual by the standards of a wealthy Californian, is infectious. At a press conference, HLI’s Chief Medical Officer, Brad Perkins, reels off Venter’s achievements, from the first sequence of a living species to the creation of synthetic genomes—Venter left his signature in the DNA of what was called ‘the world’s first synthetic organism’. “I did not pay him to say those things,” grins Venter, “but I will later.” Perkins goes on—with no hint of irony—to liken Venter to a Columbus who is exploring a terra incognita of data to “invert the current paradigm in healthcare”, from one of ad hoc sick care to one that is primarily preventive and proactive. “Welcome to the New World,” says Perkins.
HLI has now submitted an analysis of its first 10,000 human genomes for publication, passing a milestone in creating what Venter hopes will be the world’s largest, most comprehensive database of information to help transform healthcare and find answers to one of the oldest questions of all: is it possible to defy the ravages of ageing?
Some of the longer-lived citizens in America inhabit the hilly seaside community of La Jolla, a well-to-do neighbourhood of San Diego. If any place has increased the odds that its citizens will live more enduring, happier lives it is here, along this curving coastline of the Pacific.
In the early 1950s, the city earmarked the Torrey Pines area for research and light industry. Biotechnology took root when Jonas Salk, who developed the first safe and effective polio vaccine, decided to establish his institute here to explore the basic principles of life.
Today, the area hosts one of the largest concentrations of academic and biotech institutions on the planet—not just the Salk Institute but the Sanford Burnham Prebys Medical Discovery Institute, the Scripps Research Institute, and research facilities for major pharma companies such as Novartis, Pfizer, Celgene and Vertex. “San Diego has always been the most cooperative environment in terms of biological and medical research,” explains Venter.
Venter himself attended the University of California, San Diego. The completion of his biochemistry PhD there “a very long time ago” (in 1975) saw him begin a remarkable scientific odyssey, an uplifting tale given his ordinary upbringing in a working-class suburb south of San Francisco, brief sojourn as a surfer and tour of duty in the Vietnam War.
He began to forge his reputation in genome sequencing in Rockville, Maryland, in 1992 with The Institute of Genomic Research, a nonprofit private research institute (the capital T ensured, as Venter said at the time, “my institute was a Tiger (TIGR), not an Igor”). Among its accomplishments, TIGR unveiled the first complete genomic sequence of a free-living organism, the bacterium Haemophilus influenzae, in 1995. Around that time, the stress was so intense that Venter was hospitalised with peritonitis, caused by a potentially life-threatening infection.
Then, in 1998, he unveiled the privately funded Celera Genomics, which incurred the wrath of his peers in the public genome programme (even though, he protests, it was marketing information to academics and universities as much as to Big Pharma). He found himself battling with some of the world’s biggest scientific institutions. The race propelled him onto front pages around the world in June 2000 when Celera unveiled its first human genome alongside the publicly funded version.
“Everyone talks about cooperative science,” says Venter, “but I built the cooperative science with the best teams in the world, the mathematicians, the software engineers, the computer engineers, the sequencing machine engineers, cloud computing, machine learning, geneticists, biologists that are working together for the same common goal.” There’s not a scintilla of modesty about his abilities as leader and salesman of ideas.
Today, everybody in the field wants genomics to be part of medicine, he says. When it came to deciding where to bring about that merger, and finish the job that he started with Celera, Venter returned to the West Coast with his wife Heather. It was a simple choice, he says. In San Diego you can work hard, then “go have cocktails on the beach”.
In 2007, they moved into in an L-shaped glass and cream-coloured stucco home on a craggy hillside overlooking the Pacific. The following year, they got married in the three-storey mansion. Currently undergoing another renovation, their home contains wooden model ships, an art collection, and a ‘toys and joys’ room with cars, motorcycles, surfboards and more.
On the coast, occupying land owned by the university, Venter has built the Californian campus of his not-for-profit J. Craig Venter Institute, a rain-harvesting, sun-powered, carbon-neutral basic science lab made of concrete and Spanish cedar. Located on the bluffs overlooking the La Jolla shores, the building is a metaphor for a ship, a nod to Venter’s lifelong love of sailing. He has yet another office there, on the second floor, featuring a vintage motorbike, a model of his brain, certificates, medals and other paraphernalia.
He also set up Synthetic Genomics, which now occupies several low-rise buildings on a hillside on North Torrey Pines Road. This company is trying to understand the basic software of life and rewrite it to create novel organisms that can produce fuel, chemicals and medicines. Today, it has shifted its emphasis from the simple cells found in bacteria to the more complex kind found in people, and is humanising pig organs too. “We are rewriting the pig genome for organ transplantation,” says Venter. They hope the pigs will be ready by around 2020.
To synthesise the insights from these ventures, Venter founded HLI with stem cell pioneer Robert Hariri and technology entrepreneur Peter Diamandis, founder of the XPRIZE Foundation. Venter regards HLI as Celera on steroids. The effort occupies 55,600 square feet in San Diego, with another 22,200 square feet at nearby Torrey Pines on a thoroughfare called the ‘Road to the Cure’.
“The whole idea behind this is to identify the risk, then modify that risk so that you end up with longer periods of normal health,” says Thomas Caskey, Professor of Molecular and Human Genetics at Baylor College of Medicine in Houston, Texas, and a member of HLI’s advisory board. “That is what the patient wants too. The patient does not want just more years but quality years.”
HLI started out stockpiling human genomes by sequencing them for partners that needed the data for research. Tim Spector, who runs a registry of data on 11,000 twins at King’s College London, is one. “When you get [Venter] one-to-one he is a different, and calmer, beast from his image in the press,” says Spector. He recalls Venter’s proposition: I have a great technology, you have great phenotypes (data on the anatomy, physiology and behaviour of patients); let’s put them together.
HLI has completed sequencing of around 2,000 individuals for Spector, along with other analyses. It has also formed an agreement to sequence the customers of Discovery, a health insurer based in Sandton, South Africa, which has clients there and in the UK. As a bonus, this will enrich the global DNA research database with African genetic material. This is only one ingredient of what Venter hopes will become the biggest genotype-phenotype database in the world.
But when it comes to extending lifespan, Spector says HLI faces serious competition in this space, referring to companies such as Calico, backed by Google.
One reason that Venter is so passionate about understanding life is, paradoxically, because he once wanted to end his own. He dwells on his suicide bid in his autobiography, A Life Decoded, and even alluded to it in the speech he gave at the White House in June 2000.
Before President Clinton, Venter declared how “thirty-three years ago, as a young man serving in the medical corps in Vietnam, I learned first-hand how tenuous our hold on life can be. That experience inspired my interest in learning how the trillions of cells in our bodies interact to create and sustain life.”
Originally from the San Francisco Bay Area, Venter graduated from Mills High School in Millbrae a rebellious, disobedient and undistinguished student who only excelled in PE, swimming and wood shop. The 17-year-old Venter moved to Newport Beach to chase waves and girls. But his fortunes took a remarkable turn when he was drafted to serve in Vietnam.
At boot camp in San Diego, he sat an exam that revealed that his IQ was 142 – enough for him to choose any navy career. Venter selected the only one that did not require him to spend extra time enlisted in the navy: the Hospital Corps School.
In Vietnam, Venter was confronted again and again with that most basic instinct of all—survival—which took a heavy psychological toll. After five months, he set out on a one-way swim out to sea, away from the “stream of bodies that were being medevac’d from the jungles”. Then, he recalls, “I made contact with reality when a shark began testing me, prodding me in a ‘bump and bite’ attack.” Venter returned to his senses. “I became consumed with fear… I wanted to live, more than I had ever done in the previous twenty-one years of my life.”
The experience lit an academic fire in Venter’s belly. He returned to school in 1969, enrolling in the College of San Mateo and then moving to the University of California, San Diego. There he made the leap from medic to scientist, starting out by studying the ‘flight or fight’ response triggered by adrenaline. Three years after the horrors of Vietnam, he published his first paper in the Proceedings of the National Academy of Sciences. “I was elated.”
Back in his office, he’s laughing now as he tells me that of the scientific and military training he received in San Diego, he remains unsure which was more valuable to his work on the human genome programme.
His new venture is the first time he has delivered medicine since the Vietnam War. This time, however, it is medicine in the era of the -ome, big data and cloud computing.
Venter began his quest for self-knowledge around two decades ago when he entered the race to decode the human genome. He started with the most basic of questions: where to get samples from?
He mulled this over with Ham Smith, a Nobel Prize winner and Venter’s scientific right-hand man. They turned to a rich and easily produced source of DNA for sequencing: sperm—specifically, their own. “When it came to ﬁnding human DNA donors, we felt that there could not be two better informed individuals on the planet,” Venter writes in his autobiography. “At the same time we both possessed a natural curiosity about our own genomes.”
Thus, when Celera began its work in earnest, Venter’s DNA went on to make up a significant portion of the genome that he unveiled at the White House in 2000. This composite genome, a blend of DNA from different people, gave the world a glimpse of the instructions to make a body, he says, “but it did not give us a lot of understanding about any one person”.
Years later, on 4 September 2007, a team led by Sam Levy finished reading Venter’s genetic code, marking the publication of the first complete (6-billion-letter) genome of an individual human. The hope was that the code would provide important clues about health and wellbeing.
When Venter summoned up his chromosome 19 on a computer screen, he was confronted with a gloomy genetic portent in the form of the gene for apolipoprotein E (APOE), which is responsible for regulating levels of certain fats in the bloodstream. Measuring some 900 letters of genetic code, the gene comes in three common forms, known as E2, E3 and E4, each of which differs in terms of two letters. E3 is the most common variant in European/Caucasian populations and in health terms is the ‘best’. But Venter has one copy of E3 and one of E4, which differs by just one letter and has been associated with increased risk of Alzheimer’s disease, a cause of devastating dementia.
Venter had the privilege to try to change his destiny. He began to take a statin, a fat-lowering drug, which at that time showed promise in preventing symptoms of Alzheimer’s.
But what surprised him most back then was how little his genome told him. At that time, nobody knew how to read genomes with any real acuity. The problem was not with the content but interpretation. Each human genome is different, and understanding these differences is critical if we are to understand what genomes mean for health and wellbeing. Back then, there were simply not that many others to compare it to. “My genome has been out there longer than anybody else’s and I wanted to put some context around it,” Venter says.
Venter is in a relaxed mood as journalists, staff and dignitaries take their seats for an HLI press conference. “Can you bring in the paid actors as well?” he kids. “Always looks better on camera if the chairs are full.”
There’s a full house by the time he starts to discuss his plans while standing, appropriately enough, in front of a poster showing his own genetic sequence.
Over the years, the many profiles of Venter have highlighted the vision and energy that have made him consistently “over-promise and over-deliver”, as Brad Perkins quips, though I suspect his critics would only half agree. This press conference is no exception.
“Right now, we know less than 1 per cent of the genome in terms of how to really interpret it,” declares Venter. “Even with that, that’s extremely valuable in being able to start this new preventative medicine paradigm where this information can help people understand their own health risk and hopefully save a lot of lives.”
So far, HLI has amassed the sequences of around 20,000 whole genomes, says Venter (he won’t be drawn on whether it is the biggest cache—probably, but he adds that it depends on the details and that “all kinds of people make all kinds of claims”). But, of course, he wants even more. The company has room for more sequencing facilities on its third floor and is considering a second centre in Singapore, planning to rapidly scale to sequencing the genomes of 100,000 people per year—whether children, adults or centenarians, and including both those with disease and those who are healthy. By 2020, Venter aims to have sequenced a million genomes.
In his quest to make HLI the largest human sequencing operation in the world, Venter has bought 24 state-of-the-art HiSeq X sequencers from Illumina, based less than a mile away, making him their biggest customer. HLI will spend an eye-watering $30 million on reagents alone for the machines each year. Each machine is given the name of a character out of Star Wars—calling a sequencer Yoda, Jar Jar or Bane (there really was a Darth Bane, I’m assured) is much easier than remembering the Elvish names of Lord of the Rings, explains Bill Biggs, HLI’s Head of Genomic Sequencing.
The Illumina machines produce the equivalent of DNA tweets, says Biggs, reading 150 letters of code at a time. To read much longer sequences of 17,000 letters, HLI also has two DNA sequencers from Pacific Biosciences, which can help deal, for example, with highly repetitive stretches of DNA code. But while the latter can together tackle one human genome (at 30 times coverage, sequencing it around 30 times to ensure reasonable accuracy) in about a month, each Illumina sequencer can tear through 16 human genomes at the same coverage in just three days. Each week, these machines pump terabytes of data into the cloud run by Amazon Web Services. “The scale is really something,” says Biggs.
HLI will take a smart shortcut sometimes, sequencing not the whole 6 billion letters that make up both copies of a person’s code, but the 1–2 per cent that includes nearly all genes. This costs customers just $250. Those who argue that genomics will only benefit the rich, Venter says, are “pulling that out of their asses”.
Venter says their findings have changed his static view of the genome. For instance, he has been able to compare his 2006 genome with today’s, using three different sequencing technologies. “One of the findings that would have shocked me and the rest of the world 15 years ago is that our genome is continually changing,” he says. “We can relatively accurately predict your age from your genome sequence, or at least the age when the sample was taken.”
Despite the scale of its ambitions, HLI would be just another company offering DNA sequencing and testing if it were not for the fact that Venter is systematically linking DNA information to a diverse range of other medical data about each patient, gathered in what he calls a Health Nucleus.
With this, Venter wants to move from basic genetics to impacting individual lives “very directly”, he says. “The most important part of that is nothing to do with the genome directly, but measuring phenotype and physiology and understanding their medical risk. That is what the Health Nucleus is all about.”
Dressed in a smart dark suit and open-necked blue shirt, Venter smiles broadly at the crowd gathered at the opening of the first Health Nucleus, a clinic at the back of HLI. On this unseasonably hot October day in La Jolla, he cuts a ribbon and announces the Health Nucleus is now formally open. Although, he explains, the focus is on understanding the genome, HLI will gather more than just human DNA, studying the microbiomes of its patients too—their cargo of gut microbes, which play a key role in health. Most valuable of all, Venter wants to link these various -omes to patients’ phenotypes: their anatomy, physiology and behaviour. To do this, standard body measurements, online cognitive tests and blood samples are taken. Using the latter, Metabolon, a company based in Durham, North Carolina, will analyse thousands of circulating metabolites, lipids and so on.
The Health Nucleus adds yet more data using non-invasive tests. My tour begins with the room where HLI conducts a total body scan to create the avatars that inhabit its app. We pass through a succession of white rooms. There’s one where magnetic resonance imaging (MRI) scans are shown, revealing visceral fat (which is linked to type 2 diabetes and cardiovascular disease) muscle volume, grey matter, white matter and more. Venter is happy for his “age-related atrophy” report to be displayed here on a screen, given the good news about how young his brain looks.
There’s a raised wood-effect floor in one room used to measure gait and footfall; an ‘echo room’ where ultrasound takes echocardiograms of a voyager’s beating heart; one with a DXA (bone mineral density) scanner; and one with a giant MRI machine supplied by GE, where clients can select the music and hue of the lighting to make their scan—which can last up to 100 minutes—as pleasant as possible.
We enter what looks like a hotel room, complete with a sofa and pink orchids, where patients hang out between all these attempts to boil them down to bytes. Another, complete with screens, workstations and a raised table, is where the HLI team huddles each day to make sense of the deluge of data.
So far, Venter and a handful of patients have passed through the Nucleus. Targeted initially at self-insured executives and athletes, a full health scan will be priced at $25,000. Venter plans to open other centres, for instance in South Africa, and says he is already considering another in London.
Around eight patients can pass through daily and, by weaving together threads of disparate data, Venter hopes to make headway in understanding the fundamentals of ageing and, as a corollary, why many key diseases, including cancer, heart disease and Alzheimer’s, are strongly associated with old age. Ultimately, he wants HLI to live up to its promise: “It’s not just a long life we’re striving for, but one which is worth living.”
Not everyone is convinced that HLI’s testing will translate into improved health. The most analytical article on the subject, which came in the wake of a Twitter tiff between US journalist Carl Zimmer and Venter, appeared on US health and medicine website STAT. In it, Rita Redberg, a cardiologist at the University of California, San Francisco and Editor-in-Chief of JAMA Internal Medicine, said there was “absolutely no evidence that any of those tests have any benefit for healthy people”.
Venter counters, albeit anecdotally: the MRI of an otherwise healthy man in his early 50s found that he had a thymoma under his breastbone, which was subsequently removed before it spread; another patient was found to harbour a grapefruit-sized ovarian cyst, which can lead to serious complications. At the HLI launch party, a doctor told how his voyage discovered he had ‘aortic insufficiency’ and a cyst. “These are just a few examples of what we are finding,” says Venter.
Much of the resistance to testing stems from concerns about finding ‘incidentalomas’, abnormal growths that may never cause disease, he says. But that, he argues, is a legacy of old-fashioned computed tomography (CT) scans, which use X-rays. Modern MRI scans provide more detailed insights into soft tissues and can distinguish different types of tumour. The real point, says Venter, is that actuarial arguments about efficient screening campaigns are cold comfort for those unfortunate enough to develop serious diseases early in life.
He cites statistics from the US Centers for Disease Control and Prevention in Atlanta, which show that males between 50 and 74 face a 30 per cent chance of dying during that period: around one-third of that risk is down to cancer, and a similar fraction to heart disease. Picking up the cancers and heart disease before serious symptoms develop could have a big impact, he argues.
Studies (yet to be published) of HLI’s patients so far are consistent with these numbers. “We are finding serious medical issues in about a third of people going to the Health Nucleus,” he says. “Every one of them has come in thinking they’re just getting an executive physical, not thinking that they have anything wrong with them. We already have our first letter thanking us for saving somebody’s life.”
Others are concerned that there’s no point in getting advance warning of an untreatable disease, such as Alzheimer’s. “I disagree,” counters Venter. He is optimistic, given the genetic evidence and preliminary evidence from clinical trials, that strategies to prevent Alzheimer’s are likely to emerge, so it is “extremely valuable” to have advanced warning. “Treating late-stage Alzheimer’s is like treating late-stage cancer: it is virtually impossible and you are not going to have some magic drug that grows back 30 per cent of your brain.”
“We will be developing the evidence around this to make the case for preventive medicine,” adds Venter. HLI has more work to do, such as organise a randomised controlled trial to compare the outcomes of people who get the tests with those who do not.
Venter says that the criticisms stem from the conservative nature of the medical community, notably when it comes to keeping the costs of screening under control. “That is the medical establishment saying: we want to keep doing what we do, we want to see people after they develop symptoms and have something wrong with them. The ‘human longevity approach’ is the exact opposite.”
There are also concerns that echo those raised during the genome race about access to his data. Nicole Soranzo of the Wellcome Trust Sanger Institute near Cambridge, UK, regards HLI’s initiative as “very ambitious and exciting… I am very biased obviously as this project is broadly similar in aim to what we plan to do.” Her concern is whether HLI will make its data publicly accessible to all scientists. This data would be hugely invaluable but if proprietary, she says, “this would be a great shame”.
Venter says he is more concerned about patient anonymity. As an illustration of this, he beckons me over to a computer. HLI has assembled a team of machine-learning experts in Silicon Valley, led by Franz Och, the creator of Google Translate, to use all their data to predict health risks and traits. (This approach is not without its critics. Peter Coveney at University College London, who worked on an effort to create a computer model of the body, says that current medicine lacks enough ‘big understanding’ to make these methods effective. Such strategies work best when guided by theory – in this case, insights into the mechanisms of disease. Without theory to explain correlations, there will be false positives everywhere. “The more variables in play, the bigger the problem you have to map out all the correlations,” he says.)
HLI is now trying to predict facial features from genomes. One thousand volunteers have had their faces mapped in three dimensions, their voices recorded and genomes read. The company is also trying to predict what people look and sound like from their genes.
I peer at the prototype face generator in action, contrasting the patient’s face scan with the prediction. My verdict: not bad. In fact, it’s impressive when compared with the police photofits of yesteryear. Perhaps, one day, parents will be able to predict what their child will look like as an adult from fetal DNA circulating in its mother’s bloodstream.
“The point,” says Venter, “is that if we can predict your photograph and your voice from your genetic code, maybe the other things we are predicting about your risk for disease or other traits you’ll take much more seriously. At the same time, we want to be pretty careful with this,” he warns. “It is a powerful algorithm. [From a genome] we think we can identify that person.” Because genome data can be linked to a person’s identity, it has to be kept highly confidential and cannot be released online, he argues.
How to share insights without sharing genomes has featured in his discussions with Genomics England, an effort backed by the UK government to transform the NHS and bridge the gap between research and treatment by sequencing 100,000 genomes (it has done around 6,000 so far). Like HLI, Genomics England will charge industry to look at its data. “We think our [HLI] database will have extreme value and we will give broad access through subscription,” says Venter, who has also bought Cypher Genomics, a San Diego-based company selected by Genomics England to help interpret the genome.
We already know, based on a project that used Venter’s own genome, that it is possible to identify a supposedly anonymous genome by triangulating it with the help of a consumer genealogy database, public records and so on. Anyone who thinks they can ‘de-identify’ a genome should think again, Venter says. Equally, anyone whose genome is on the database should be asked if they are comfortable with the idea that anonymity cannot be guaranteed. Any agency that claims that genome information can be both anonymous and in the public domain is possessed of a “silly-assed notion”, he states.
He is most concerned about misuse of data on the cloud, and is working hard to make sure HLI’s ocean of patient data cannot be used for nefarious purposes. “I trust my own opinion more than I trust some pop science ethics commentator’s,” says Venter. “To me ethics are something that every person either has or doesn’t have. No priest of science can tell you what your ethics should or could be.”
In 2012, the futurist Ray Kurzweil told me how his father died of heart disease, and that he himself was diagnosed with high cholesterol and type 2 diabetes aged 35. After consulting a “leading proponent of immortality medicine”, he started to swallow 150 pills a day in the hope he would still be alive when scientists build what he refers to as the next ‘bridge’ in technology, the stem cell revolution, which in turn will keep him going until the subsequent bridge when, no doubt, nanobots will swim in his bloodstream.
Kurzweil is one of HLI’s advisors. Does Venter buy into this wide-eyed techno-future? No. Kurzweil’s vision is interesting but does not change a thing he does on a daily basis. Kurzweil swallows more pills in 24 hours than he does in a year. Though Venter wants to see the kind of step change in health last witnessed between 1910 and 2010, when improvements in medicine and sanitation increased the average lifespan from around 50 to 75 years, life extension is not the primary objective, he stresses. The real goal is quality of old age, not quantity, he explains. The planet is struggling to support the human population as it is. When men can live to 200, “we might have to castrate all of them”, he quips.
How goes his personal quest to delay ageing? His bald, sunburned head attests to genetic evidence of higher risk behaviour in the form of his love of swimming, surfing, sailing, bike riding and sunshine. “If you go out here in San Diego on a day like this, when it’s 85 degrees outside in the bright, hot sun, you can get thousands of mutations in your skin genome from that radiation damage. We replace our outer skin roughly every two weeks, so that helps mitigate it.”
But some people have a high risk of cancer, such as Venter himself. If you look at his genetic risk profile, he is in the 93rd percentile for melanoma. When you add in his behaviour, cancer is a near certainty. “I have had almost every form of skin cancer,” he says. Every year he has several basal cell and squamous cell skin tumours removed. “I have already been able to save my own life by early recognition of a melanoma and getting rid of it.”
Thanks to the APOE steer from his personal genome, he has now been taking statins for almost 15 years. However, his own experience sums up the problem with interpreting a genome. He recently underwent an MRI brain scan and was given a test for the amyloid protein that builds up in the brain during Alzheimer’s. Doctors feared that if they found evidence of amyloid, and a clear diagnosis of Alzheimer’s, Venter would lose his investors and his job long before he lost his mind. “The medical community was so nervous about it, they made me do it under a pseudonym,” he tells me. Venter’s first suggestion was Charles Darwin.
He was injected with a harmless, radioactive molecule that binds to clumps of amyloid and can then be detected with a positron-emission tomography (PET) brain scan. “The nice thing was that it came back with zero amyloid.” When it comes to his blend of APOE genes, perhaps the link with Alzheimer’s is not fully understood: there are protective genes that may compensate for its effects, or external factors, such as blows to the head, may prove critical—or a complex combination of all the above, he explains.
The first HLI ‘voyager’ has been given more good news. Venter’s cardiologist is happy with the latest imaging of his heart. “They are impressed that it is still there and functioning,” he says.
As his 70th birthday approaches, Venter is only too aware of his own mortality. While his mother, aged 92, is “still pretty bright” despite a stroke, his father only lived to 59 as a result of sudden cardiac death. “I am now ten years beyond that,” he says with a chuckle of satisfaction. But if you really want immortality, he adds, “do something meaningful with your life”.
Roger Highfield is Director of External Affairs at the Science Museum Group and was the outside editor on Craig Venter’s two books, ‘A Life Decoded’ and ‘Life at the Speed of Light’. This article has drawn on conversations with Venter that took place over more than two decades, beginning when the author first interviewed him for the ‘Daily Telegraph’. He has written two books with Peter Coveney and also sits on a committee for Genomics England.
Mosaic is published by the Wellcome Trust, which supports the Wellcome Trust Sanger Institute and was a funder of the publicly led Human Genome Project.
This article first appeared on Mosaic and is republished here under a Creative Commons licence.