Paralyzed By Polio, This British Tea Broker Changed the Course Of Medical History Forever
In December 1958, on a vacation with his wife in Kenya, a 28-year-old British tea broker named Robin Cavendish became suddenly ill. Neither he nor his wife Diana knew it at the time, but Robin's illness would change the course of medical history forever.
Robin was rushed to a nearby hospital in Kenya where the medical staff delivered the crushing news: Robin had contracted polio, and the paralysis creeping up his body was almost certainly permanent. The doctors placed Robin on a ventilator through a tracheotomy in his neck, as the paralysis from his polio infection had rendered him unable to breathe on his own – and going off the average life expectancy at the time, they gave him only three months to live. Robin and Diana (who was pregnant at the time with their first child, Jonathan) flew back to England so he could be admitted to a hospital. They mentally prepared to wait out Robin's final days.
But Robin did something unexpected when he returned to the UK – just one of many things that would astonish doctors over the next several years: He survived. Diana gave birth to Jonathan in February 1959 and continued to visit Robin regularly in the hospital with the baby. Despite doctors warning that he would soon succumb to his illness, Robin kept living.
After a year in the hospital, Diana suggested something radical: She wanted Robin to leave the hospital and live at home in South Oxfordshire for as long as he possibly could, with her as his nurse. At the time, this suggestion was unheard of. People like Robin who depended on machinery to keep them breathing had only ever lived inside hospital walls, as the prevailing belief was that the machinery needed to keep them alive was too complicated for laypeople to operate. But Diana and Robin were up for the challenges – and the risks. Because his ventilator ran on electricity, if the house were to unexpectedly lose power, Diana would either need to restore power quickly or hand-pump air into his lungs to keep him alive.
Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
In an interview as an adult, Jonathan Cavendish reflected on his parents' decision to live outside the hospital on a ventilator: "My father's mantra was quality of life," he explained. "He could have stayed in the hospital, but he didn't think that was as good of a life as he could manage. He would rather be two minutes away from death and living a full life."
After a few years of living at home, however, Robin became tired of being confined to his bed. He longed to sit outside, to visit friends, to travel – but had no way of doing so without his ventilator. So together with his friend Teddy Hall, a professor and engineer at Oxford University, the two collaborated in 1962 to create an entirely new invention: a battery-operated wheelchair prototype with a ventilator built in. With this, Robin could now venture outside the house – and soon the Cavendish family became famous for taking vacations. It was something that, by all accounts, had never been done before by someone who was ventilator-dependent. Robin and Hall also designed a van so that the wheelchair could be plugged in and powered during travel. Jonathan Cavendish later recalled a particular family vacation that nearly ended in disaster when the van broke down outside of Barcelona, Spain:
"My poor old uncle [plugged] my father's chair into the wrong socket," Cavendish later recalled, causing the electricity to short. "There was fire and smoke, and both the van and the chair ground to a halt." Johnathan, who was eight or nine at the time, his mother, and his uncle took turns hand-pumping Robin's ventilator by the roadside for the next thirty-six hours, waiting for Professor Hall to arrive in town and repair the van. Rather than being panicked, the Cavendishes managed to turn the vigil into a party. Townspeople came to greet them, bringing food and music, and a local priest even stopped by to give his blessing.
Robin had become a pioneer, showing the world that a person with severe disabilities could still have mobility, access, and a fuller quality of life than anyone had imagined. His mission, along with Hall's, then became gifting this independence to others like himself. Robin and Hall raised money – first from the Ernest Kleinwort Charitable Trust, and then from the British Department of Health – to fund more ventilator chairs, which were then manufactured by Hall's company, Littlemore Scientific Engineering, and given to fellow patients who wanted to live full lives at home. Robin and Hall used themselves as guinea pigs, testing out different models of the chairs and collaborating with scientists to create other devices for those with disabilities. One invention, called the Possum, allowed paraplegics to control things like the telephone and television set with just a nod of the head. Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
Robin went on to enjoy a long and happy life with his family at their house in South Oxfordshire, surrounded by friends who would later attest to his "down-to-earth" personality, his sense of humor, and his "irresistible" charm. When he died peacefully at his home in 1994 at age 64, he was considered the world's oldest-living person who used a ventilator outside the hospital – breaking yet another barrier for what medical science thought was possible.
The news last November that a rogue Chinese scientist had genetically altered the embryos of a pair of Chinese twins shocked the world. But although this use of advanced technology to change the human gene pool was premature, it was a harbinger of how genetic science will alter our healthcare, the way we make babies, the nature of the babies we make, and, ultimately, our sense of who and what we are as a species.
The healthcare applications of the genetics revolution are merely stations along the way to the ultimate destination.
But while the genetics revolution has already begun, we aren't prepared to handle these Promethean technologies responsibly.
By identifying the structure of DNA in the 1950s, Watson, Crick, Wilkins, and Franklin showed that the book of life was written in the DNA double helix. When the human genome project was completed in 2003, we saw how this book of human life could be transcribed. Painstaking research paired with advanced computational algorithms then showed what increasing numbers of genes do and how the genetic book of life can be read.
Now, with the advent of precision gene editing tools like CRISPR, we are seeing that the book of life -- and all biology -- can be re-written. Biology is being recognized as another form of readable, writable, and hackable information technology with we humans as the coders.
The impact of this transformation is being first experienced in our healthcare. Gene therapies including those extracting, re-engineering, then reintroducing a person's own cells enhanced into cancer-fighting supercells are already performing miracles in clinical trials. Thousands of applications have already been submitted to regulators across the globe for trials using gene therapies to address a host of other diseases.
Recently, the first gene editing of cells inside a person's body was deployed to treat the genetically relatively simple metabolic disorder Hunter syndrome, with many more applications to come. These new approaches are only the very first steps in our shift from the current system of generalized medicine based on population averages to precision medicine based on each patient's individual biology to predictive medicine based on AI-generated estimations of a person's future health state.
Jamie Metzl's groundbreaking new book, Hacking Darwin: Genetic Engineering and the Future of Humanity, explores how the genetic revolution is transforming our healthcare, the way we make babies, and the nature of and babies we make, what this means for each of us, and what we must all do now to prepare for what's coming.
This shift in our healthcare will ensure that millions and then billions of people will have their genomes sequenced as the foundation of their treatment. Big data analytics will then be used to compare at scale people's genotypes (what their genes say) to their phenotypes (how those genes are expressed over the course of their lives).
These massive datasets of genetic and life information will then make it possible to go far beyond the simple genetic analysis of today and to understand far more complex human diseases and traits influenced by hundreds or thousands of genes. Our understanding of this complex genetic system within the vaster ecosystem of our bodies and the environment around us will transform healthcare for the better and help us cure terrible diseases that have plagued our ancestors for millennia.
But as revolutionary as this challenge will be for medicine, the healthcare applications of the genetics revolution are merely stations along the way to the ultimate destination – a deep and fundamental transformation of our evolutionary trajectory as a species.
A first inkling of where we are heading can be seen in the direct-to-consumer genetic testing industry. Many people around the world have now sent their cheek swabs to companies like 23andMe for analysis. The information that comes back can tell people a lot about relatively simple genetic traits like carrier status for single gene mutation diseases, eye color, or whether they hate the taste of cilantro, but the information about complex traits like athletic predisposition, intelligence, or personality style today being shared by some of these companies is wildly misleading.
This will not always be the case. As the genetic and health data pools grow, analysis of large numbers of sequenced genomes will make it possible to apply big data analytics to predict some very complex genetic disease risks and the genetic components of traits like height, IQ, temperament, and personality style with increasing accuracy. This process, called "polygenic scoring," is already being offered in beta stage by a few companies and will become an ever bigger part of our lives going forward.
The most profound application of all this will be in our baby-making. Before making a decision about which of the fertilized eggs to implant, women undergoing in vitro fertilization can today elect to have a small number of cells extracted from their pre-implanted embryos and sequenced. With current technology, this can be used to screen for single-gene mutation diseases and other relatively simple disorders. Polygenic scoring, however, will soon make it possible to screen these early stage pre-implanted embryos to assess their risk of complex genetic diseases and even to make predictions about the heritable parts of complex human traits. The most intimate elements of being human will start feeling like high-pressure choices needing to be made by parents.
The limit of our imagination will become the most significant barrier to our recasting biology.
Adult stem cell technologies will then likely make it possible to generate hundreds or thousands of a woman's own eggs from her blood sample or skin graft. This would blow open the doors of reproductive possibility and allow parents to choose embryos with exceptional potential capabilities from a much larger set of options.
The complexity of human biology will place some limits to the extent of possible gene edits that might be made to these embryos, but all of biology, including our own, is extremely flexible. How else could all the diversity of life have emerged from a single cell nearly four billion years ago? The limit of our imagination will become the most significant barrier to our recasting biology.
But while we humans are gaining the powers of the gods, we aren't at all ready to use them.
The same tools that will help cure our worst afflictions, save our children, help us live longer, healthier, more robust lives will also open the door to potential abuses. Prospective parents with the best of intentions or governments with lax regulatory structures or aggressive ideas of how population-wide genetic engineering might be used to enhance national competitiveness or achieve some other goal could propel us into a genetic arms race that could undermine our essential diversity, dangerously divide societies, lead to dangerous, destabilizing, and potentially even deadly conflicts between us, and threaten our very humanity.
But while the advance of genetic technologies is inevitable, how it plays out is anything but. If we don't want the genetic revolution to undermine our species or lead to grave conflicts between genetic haves and have nots or between societies opting in and those opting out, now is the time when we need to make smart decisions based on our individual and collective best values. Although the technology driving the genetic revolution is new, the value systems we will need to optimize the benefits and minimize the harms of this massive transformation are ones we have been developing for thousands of years.
And while some very smart and well-intentioned scientists have been meeting to explore what comes next, it won't be enough for a few of even our wisest prophets to make decisions about the future of our species that will impact everyone. We'll also need smart regulations on both the national and international levels.
Every country will need to have its own regulatory guidelines for human genetic engineering based on both international best practices and the country's unique traditions and values. Because we are all one species, however, we will also ultimately need to develop guidelines that can apply to all of us.
As a first step toward making this possible, we must urgently launch a global, species-wide education effort and inclusive dialogue on the future of human genetic engineering that can eventually inform global norms that will need to underpin international regulations. This process will not be easy, but the alternative of an unregulated genetic arms race would be far worse.
The overlapping genomics and AI revolutions may seem like distant science fiction but are closer than you think. Far sooner than most people recognize, the inherent benefits of these technologies and competition between us will spark rapid adoption. Before that spark ignites, we have a brief moment to come together as a species like we never have before to articulate and translate into action the future we jointly envision. The north star of our best shared values can help us navigate the almost unimaginable opportunities and very real challenges that lie ahead.
Here's something to chew on. Can a gulp of water help save the planet? If you're drinking *and* eating your water at the same time, the answer may be yes.
The tasteless packaging is made from brown seaweed that biodegrades naturally in four to six weeks.
The Lowdown
A start-up company called Skipping Rocks Lab has created a "water bubble" encased in an edible sachet that you can pop in your mouth whole. Or if you're not into swallowing it, you can tear off the edge, drink up, and toss the rest in a composter. The tasteless packaging is made from brown seaweed that biodegrades naturally in four to six weeks, whereas plastic water bottles can linger for hundreds of years.
The founders of the London-based company are determined to "make plastic packaging disappear." They had two foodie inspirations: molecular gastronomists and fruit. They tried to emulate the way chefs used edible membranes to encase bubbles of liquid to make things like fake caviar and fake egg yolks; and they also considered the peel of an orange or banana, which protects the tasty insides but can be composted.
The sachets can also contain other liquids that come in single-serve plastic containers -- think packets of condiments with takeout meals, specialty cocktails at parties, and especially single servings of water for sporting events. The London Marathon last month gave out the water bubble pods at a station along the route, using them to replace 200,000 plastic bottles that would have likely ended up first in the street, and ultimately in the ocean.
Next Up
The engineers and chemists at Skipping Rocks intend to lease their machines to others who can then manufacture their own sachets on-site to fill with whatever they desire. The new material, which is dubbed "Notpla" (not plastic), also has other applications beyond holding liquids. It can be used to replace the plastic lining in cardboard takeout boxes, for example. And the startup is working on additional materials to replace other types of ubiquitous plastic packaging, like the netting that encases garlic and onions, and the sachets that hold nails and screws.
Edible water bubbles may be the future of drinks at sporting events and festivals.
Open Questions
One hurdle is that the pods are not very hardy, so while they work fine to hand out along a marathon route, they wouldn't really be viable for a hiker to throw in her backpack. Another issue concerns the retail market: to be stable on a shelf, they'd have to be protected from all that handling, which brings us back to the problem the engineers tried to solve in the first place -- disposable packaging.
So while Skipping Rocks may not achieve their ultimate goal of ridding the world of plastic waste, a little progress can still go a long way. If edible water bubbles are the future of drinks at sporting events and festivals, the environment will certainly benefit from their presence -- and absence.