The Health Nucleus, a rigorous new medical testing program from San Diego–based Human Longevity, Inc., promises to tell you about your present and future health—and dramatically change the practice of medicine.
There’s a scene in Ann Patchett’s newest novel, Commonwealth, that gave me pause when I read it recently. A retired cop named Fix is talking to his daughters, Franny and Caroline, about the fact that he’s dying of cancer. “People are scared of the wrong things,” Fix tells them. “We go around thinking that what’s going to get us is waiting on the other side of the door; it’s outside, it’s in the closet. But it isn’t like that…. For the vast majority of the planet, the thing that’s going to kill them is already on the inside.”
That is the kind of truism that novelists and scientists explore, but you and I and pretty much everyone else prefer not to think about. I, however, couldn’t stop thinking about it, because I was about to partake in a daylong medical evaluation, called the Health Nucleus, whose very purpose was to determine what is inside me that might cause my death. The Health Nucleus, created and operated by a San Diego–based company called Human Longevity, Inc. (HLI), is a daylong series of advanced medical tests that go way beyond what your doctor would conduct, as well as probably the most complete genetic sequencing in existence. If you are sick, the Health Nucleus is very likely to find that out. But the Health Nucleus may also be able to find out if you are going to get sick—and from what. Most people, of course, want to know the former. But do they want to know what might happen to them in the future?
Some background is in order. HLI came to Worth’s attention during our research into 2016’s Worth Destinations, our annual list of the 15 most dynamic cities in the country. San Diego was one of our picks, not just because of its soul-soothing climate and natural beauty but also because of its status as a hub for scientific research, particularly in biotech. HLI is one of the stars of that community. The company’s cofounder and executive chairman is J. Craig Venter, one of the world’s most renowned DNA researchers and the first person to decode a human genome. (It happened to be his own.)
For decades Venter has pioneered research to better understand genetic-based illness and extend the human life span. That is also HLI’s mission: to increase our understanding of DNA by compiling genotypic and phenotypic data (basically, people’s genetic and observable characteristics) and using machine learning to analyze it. That way HLI can learn more about the relationship between genes and illness, study how drugs affect individuals, create DNA-specific vaccines and make the field of medicine more data driven. “We like to think of ourselves as a health-intelligence data company,” HLI president Kenneth Bloom told me.
The Health Nucleus, which costs clients $25,000, is a critical part of that vision. First, its combination of clinical testing and genetic sequencing can help identify clients’ present and potential future health issues. Second, HLI retains the genetic data of everyone who goes through the Nucleus—it is rigorously anonymized—which helps HLI build its library of genetic data. And third, because the Nucleus’ doctors and scientists work with the clients’ physicians, the Nucleus aims to promote greater adoption of data-driven medicine within the medical world. As Venter puts it, “The general definition of health is out of the Middle Ages: If you look healthy, you are healthy.” But how do doctors really know patients are healthy if they don’t know what’s in their genes? “The medical world is conventional, it’s steeped in tradition, it’s slow to change,” says Pamila Brar, HLI’s medical director. “We want to serve as a prototype for the medical community, showing the value of personalized medicine in early detection of disease.”
The Health Nucleus is a fascinating, ambitious project, but it’s also complicated, which is why HLI asked me to go through the Health Nucleus and write about the experience. The company wants to communicate the Nucleus to high net worth individuals, like those who read Worth, who can afford its $25,000 cost. That price may come down in the future, and HLI is developing less-expensive products that incorporate parts of the Nucleus; no one at the company wants the benefits of its work to be limited to the wealthy. But at the moment, the cost of this medical testing and genome sequencing is what it is.
HLI’s argument is basically this: People spend $25,000 on lots of things—cars, vacations, second homes. What’s more important than your health? And while $25,000 up front may seem like a lot, it’s a bargain if it saves your life or obviates costly treatment a few years down the road.
The Health Nucleus is based in the HLI headquarters in San Diego, but as I learned, the client experience begins well before a visit there. Preliminary enrollment can take place over the phone or at healthnucleus.com, followed by a phone call from a Health Nucleus genetic counselor to walk you through the experience. “Phone call” isn’t really the right way to describe it, though—this introductory briefing is considerably longer than a typical doctor’s appointment.
Nurse Erin Coughlin described what would happen when I arrived at the Health Nucleus. After having skipped breakfast so as not to skew the results of blood work, I’d be taken to a suite—my base for the day—to change into workout pants, a T-shirt and sandals. Then, straight into the tests. There are a lot of them: blood samples, a CT scan, a body mass scan, an MRI, an echocardiogram, gait and balance testing, neurocognitive testing, a stool sample, a family medical history. The whole thing takes about six to eight hours, including breakfast and lunch. Clinical results come back in about two weeks; the genetic ones, which are much more labor intensive, in about two months. You can return to the Nucleus to get them, or a doctor will talk you through them over the phone.
“We’re focused on the diseases that we know are really likely to cause the shortening of someone’s life span,” Pamila Brar told me. “The big buckets are cardiovascular disease, cancer, metabolic diseases like diabetes and neurodegenerative illnesses like Alzheimer’s and Parkinson’s.” About 600 clients have gone through the Nucleus, Brar said. Of those 600, about 8 percent have had something that Nucleus doctors thought required immediate intervention and 40 percent have gained actionable insight. Venter himself was part of that urgent 8 percent; he was found to have high-grade prostate cancer, likely to grow fast, and quickly underwent surgery for tumor removal. “All the results that we’ve found so far have been actionable,” Venter told me—meaning that the Nucleus hadn’t found anything its doctors (or its clients’ doctors) couldn’t do something about.
All of this was reassuring. But still, I had some anxiety. I’ve never been diligent about going to the doctor, partly because I don’t enjoy it and partly because I haven’t gotten sick. Plus, after moving out of New York City in 2013, I’d lost touch with my general practitioner and not found another. The result: five years since my last physical. Which was stupid, because around 2011, my doctor had detected a lump in my thyroid, which I’d had to have biopsied. The growth wasn’t cancerous, but that could have changed.
In the meantime, almost too busy to notice, I’d somehow slipped into middle age. I’d gained a little weight, wasn’t as fit as I used to be and only slept about six hours a night. Not the best time to stop seeing a doctor.
I also had another, deeper concern—what would the genetic testing find? My paternal grandfather, an architect, had died of Parkinson’s disease before I was born. My father, a writer and editor, also died of Parkinson’s. I remember him trying to force his body to do things it no longer could—hold a fork, chew, swallow. Was I fated to suffer the same?
Health Nucleus clients don’t have to receive any results they don’t want to hear, and Dr. Brar told me that the only results some clients shun are genetic data that indicate a predisposition to neurologic disease such as Parkinson’s or, even more, Alzheimer’s. A small number of clients feel that there’s no point in learning that you might get an illness for which there’s no cure. Cautioning that genetic data can’t provide a black-and-white diagnosis, Brar says, “We keep hearing that there’s so much [treatment] on the horizon, but…that’s one of the ones that’s hard. Still, we do believe that our knowledge of the genome will lead to better treatments.”
Before going through the Nucleus, I asked Venter if, given the deaths of my grandfather and father, my concern about Parkinson’s was legitimate. “Yup,” he said. (Craig Venter is not one to sugarcoat things.) But I decided that I wanted to know all my results. If nothing else, knowing if I carry a potential death sentence inside me would give me added inspiration to live life with passion and appreciation.
If you have to go somewhere to get your body poked and prodded for a day, San Diego isn’t the worst place, and the day earlier this year when I went through the Nucleus was typical Southern California gorgeous—sunny, warm, breezy. A Health Nucleus staffer ushered me to my suite, which was comfortable, bright and equipped with a television and topical reading material: The Immortal Life of Henrietta Lacks, about the woman whose cells would become one of the most important tools in medicine, and copies of Venter’s own books, an autobiography and a book about genetics.
I changed into my patient gear, and after a rundown of the day’s agenda, we moved quickly into the tests. They were painless and, for the most part, intellectually stimulating; I found it fascinating to see one’s own body as a subject of holistic study. The family medical history, conducted by a doctor named Heidi Millard, felt more like a conversation between old friends. An MRI is never what you’d call fun, but the Health Nucleus machine is late-model technology; it’s slightly roomier than older versions, and you can listen to music via headphones and watch a video through a special headset during the roughly 75-minute procedure. I chose a video of fish swimming around a coral reef—peaceful—and listened to the Grateful Dead station on Pandora, on the premise that the jams were transcendent.
One thing that made the day unexpectedly pleasant: HLI hires impressive people. There were no harried, monosyllabic nurses or technicians; the Nucleus staff was both impressively intelligent and deeply empathetic. I asked a lot of questions, many of them at the margins of scientific and medical literacy. Never was there a hint of impatience or brusqueness. Granted, they knew I was a journalist. But I’ve since talked to other Health Nucleus alums who felt the same way.
How do doctors really know patients are healthy if they don’t know what’s in their genes?
My last test of the day was an echocardiogram, and as I lay on a lounge chair watching a monitor showing an image of my beating heart, I asked the technician, a 30-something man named Ade Tuyo, who had previously worked in several hospitals, how this work environment differed from his past experience. For one thing, he said, he wasn’t rushed—he could take as many photographs of the heart as he needed to, and thereby get a more accurate picture of its health. He didn’t have to work in a cramped hospital room, often with family members pressing in on him, frantic to know if their loved one was going to live or die.
Best of all, he said, he was seeing people before there was a problem like, say, a heart attack—when you could still do something to prevent it.
Heidi Millard called me two weeks later with the results of my clinical testing. She had, she said, “lots of good news.” The results showed nothing life-threatening. Among the results: My brain looked good, free of abnormalities or tumors, no narrowing of blood vessels that could lead to an aneurysm. The whole-body MRI didn’t find anything dangerous whatsoever. It had detected the lump in my thyroid, but all of my blood thyroid testing was completely normal. My bone density was great; there were no signs of osteoporosis, and I appeared to be someone who was less likely to break a bone if I fell in the future. I had no detectable plaque in my coronary arteries.
There were a few small warning signs. I was vitamin-D deficient. My blood sugar level was higher than it should be, in the prediabetic range (apparently this is true for lots of Americans), probably the result of added sugar in my diet. My LDL cholesterol level—that’s the bad one—was 130, higher than the ideal of less than 100. Both those things could be addressed with changes in diet and lifestyle—more fiber, whole grains, vegetables and fish, less red meat, sugar and saturated fats. Also, more exercise: at least 30 minutes a day, five days a week. “You don’t have to be drastic here,” Dr. Millard told me. “Small changes will make a big difference.” I hung up the phone feeling a balance of relief—could have been much worse!—and some irritation with myself. I used to exercise almost every day. How had I let that go?
About six weeks later, the results of my genetic testing were ready, so the Health Nucleus set up a video conference call for me with Millard and genetic counselor Christina Rybek. The interpretation of human DNA, Rybek explained on the call, was like “reading a set of encyclopedias and seeing if there are any spelling errors, any words or chapters missing that would tell us why you might have a health issue, or if there are any risks in the future we should know about, or risks for future generations.” There are different ways of reading that encyclopedia. Some are rigorous and some are like CliffsNotes. (The folks at HLI don’t have a ton of respect for what you might call pop DNA sites like 23andMe, which they suggest fall into the CliffsNotes side of the ledger, and they’re skeptical about how those sites market themselves. I’m inclined to agree: 23andMe recently featured on its website a long explanation of the genetic ancestry of Gru, the likable rogue from the animated children’s movie Despicable Me 3, including a short film called Watch Gru’s Genetic Journey.)
How HLI examines your DNA is, frankly, too complicated to detail here. But one of the things its scientists look for is what Rybek called “single gene findings”—a gene that is rarely seen in genetic databases. Searching for these single gene variations “is like looking for specific words in the encyclopedia because there’s an association between that word and a health risk.”
In this regard, I was lucky, Rybek told me. I was one of the relatively rare people who had no medically significant variants, something the Health Nucleus sees in only about 5 percent of clients. Most people had between two and six “findings.” The genome sequencing couldn’t pick up everything, Rybek cautioned. Still, the news was good.
What about my greatest concern—was there anything that indicated a predisposition to Parkinson’s?
In fact, Millard said, the tests did show a slightly increased risk for Parkinson’s relative to the general population—but less than she would have expected given my family history. “It was reassuring that it wasn’t all the way on the higher side,” Millard told me.
“I wanted to know all my results…knowing if I carry a potential death sentence would give me added inspiration to live life with passion and appreciation.”
I also looked, Millard added, like someone with a slightly increased risk for Alzheimer’s, which threw me a little—I hadn’t really considered that. But the fact that there’s no history of the disease in my family suggested that the actual risk was probably less than the level shown in the sequencing. “The risk is profound,” Millard explained, “when it’s matched by a family history.” Plus, if I exercised, avoided heart disease and diabetes, kept mentally active—all these things would make Alzheimer’s less likely for me.
It was a lot to think about, and I would have plenty of time for that later: After their doctors go over results with clients, HLI posts digital files that detail and explain your results on its web portal, which has considerably higher security than your typical website. These files are an enormous resource for future reference, especially if you have a regular physician. The one detailing the results of your genetic testing can run 500 pages long.
Some weeks later, I’ve already made changes in my life. I’ve cut down the amount of sweets in my diet drastically. I’m taking a daily vitamin D pill. And I’ve cut back on meat consumption and am eating more fish and vegetables. The result: I’ve lost a little weight, and I feel more energetic, less sluggish.
Most of all, I feel more relaxed, more confident about my health future. Somehow, knowing makes things better; I prefer information to ignorance, and I worry more about what I don’t know than what I do. “Knowledge is power,” Venter says about the Health Nucleus. Now that I’m equipped with it, I think he’s right.
For more information on the Health Nucleus, visit healthnucleus.com.