They received retinal implants to restore their vision. Then the company turned its back on them.
The first thing Jeroen Perk saw after he partially regained his sight nearly a decade ago was the outline of his guide dog Pedro.
“There was a white floor, and the dog was black,” recalls Perk, a 43-year-old investigator for the Dutch customs service. “I was crying. It was a very nice moment.”
Perk was diagnosed with retinitis pigmentosa as a child and had been blind since early adulthood. He has been able to use the implant placed into his retina in 2013 to help identify street crossings, and even ski and pursue archery. A video posted by the company that designed and manufactured the device indicates he’s a good shot.
Less black-and-white has been the journey Perk and others have been on after they were implanted with the Argus II, a second-generation device created by a Los Angeles-based company called Second Sight Medical Devices.
The Argus II uses the implant and a video camera embedded in a special pair of glasses to provide limited vision to those with retinitis pigmentosa, a genetic disease that causes cells in the retina to deteriorate. The camera feeds information to the implant, which sends electrical impulses into the retina to recapitulate what the camera sees. The impulses appear in the Argus II as a 60-pixel grid of blacks, grays and whites in the user’s eye that can render rough outlines of objects and their motion.
Smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Ross Doerr, a retired disability rights attorney in Maine who received an Argus II in 2019, describes the field of vision as the equivalent of an index card held at arm’s length. Perk often brings objects close to his face to decipher them. Moreover, users must swivel their heads to take in visual data; moving their eyeballs does not work.
Despite its limitations, the Argus II beats the alternative. Perk no longer relies on his guide dog. Doerr was uplifted when he was able to see the outlines of Christmas trees at a holiday show.
“The fairy godmother department sort of reaches out and taps you on the shoulder once in a while,” Doerr says of his implant, which came about purely by chance. A surgeon treating his cataracts was partnered with the son of another surgeon who was implanting the devices, and he was referred.
Doerr had no reason to believe the shower of fairy dust wouldn’t continue. Second Sight held out promises that the Argus II recipients’ vision would gradually improve through upgrades to much higher pixel densities. The ability to recognize individual faces was even touted as a possibility. In the winter of 2020, Doerr was preparing to travel across the U.S. to Second Sight’s headquarters to receive an upgrade. But then COVID-19 descended, and the trip was canceled.
The pandemic also hit Second Sight’s bottom line. Doerr found out about its tribulations only from one of the company’s vision therapists, who told him the entire department was being laid off. Second Sight cut nearly 80% of its workforce in March 2020 and announced it would wind down operations.
Ross Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market.
Jan Doerr
Second Sight’s implosion left some 350 Argus recipients in the metaphorical dark about what to do if their implants failed. Skeleton staff seem to have rarely responded to queries from their customers, at least based on the experiences of Perk and Doerr. And some recipients have unfortunately returned to the actual dark as well, as reports have surfaced of Argus II failures due to aging or worn-down parts.
Product support for complex products is remarkably uneven. Although the iconic Ford Mustang ceased production in the late 1960s, its parts market is so robust that it’s theoretically possible to assemble a new vehicle from recently crafted components. Conversely, smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. Consumers have accepted both extremes.
But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Margaret McLean, a senior fellow at the Markkula Center for Applied Ethics at Santa Clara University in California, notes companies like Second Sight have a greater obligation for product support than other consumer product ventures.
“In this particular case, you have a great deal of risk that is involved in using this device, the implant, and the after care of this device,” she says. “You cannot, like with your car, decide that ‘I don’t like my Mustang anymore,’ and go out and buy a Corvette.”
And, whether the Argus II implant works or not, its physical presence can impact critical medical decisions. Doerr’s doctor wanted him to undergo an MRI to assist in diagnosing attacks of vertigo. But the physician was concerned his implant might interfere. With the latest available manufacturer advisories on his implant nearly a decade old, the procedure was held up. Doerr spent months importuning Second Sight through phone calls, emails and Facebook postings to learn if his implant was contraindicated with MRIs, which he never received. Although the cause of his vertigo was found without an MRI, Doerr was hardly assured.
“Put that into context for a minute. I get into a serious car accident. I end up in the emergency room, and I have a tag saying I have an implanted medical device,” he says. “You can’t do an MRI until you get the proper information from the company. Who’s going to answer the phone?”
Second Sight’s management did answer the call to revamp its business. It netted nearly $78 million through a private stock placement and an initial public offering last year. At the end of 2021, Second Sight had nearly $70 million in cash on hand, according to a recent filing with the Securities and Exchange Commission.
And while the Argus II is still touted at length on Second Sight’s home page, it appears little of its corporate coffers are earmarked toward its support. These days, the company is focused on obtaining federal approvals for Orion, a new implant that would go directly into the recipient’s brain and could be used to remedy blindness from a variety of causes. It obtained a $6.4 million grant from the National Institutes of Health in May 2021 to help develop Orion.
Presented with a list of written questions by email, Second Sight’s spokesperson, Dave Gentry of the investor relations firm Red Chip Companies, copied a subordinate with an abrupt message to “please handle.” That was the only response from a company representative. A call to Second Sight acting chief executive officer Scott Dunbar went unreturned.
Whether or not the Orion succeeds remains to be seen. The company’s SEC filings suggest a viable and FDA-approved device is years away, and that operational losses are expected for the “foreseeable future.” Second Sight reported zero revenue in 2020 or 2021.
Moreover, the experiences of the Argus II recipients could color the reception of future Second Sight products. Doerr notes that his insurer paid nearly $500,000 to implant his device and for training on how to use it.
“What’s the insurance industry going to say the next time this crops up?” Doerr asks, noting that the company’s reputation is “completely shot” with the recipients of its implants.
Perk, who made speeches to praise the Argus II and is still featured in a video on the Second Sight website, says he also no longer supports the company.
Jeroen Perk, an investigator for the Dutch customs service, cried for joy after partially regaining his sight, but he no longer trusts Second Sight, the company that provided his implant.
Nanda Perk
Nevertheless, Perk remains highly reliant on the technology. When he dropped an external component of his device in late 2020 and it broke, Perk briefly debated whether to remain blind or find a way to get his Argus II working again. Three months later, he was able to revive it by crowdsourcing parts, primarily from surgeons with spare components or other Argus II recipients who no longer use their devices. Perk now has several spare parts in reserve in case of future breakdowns.
Despite the frantic efforts to retain what little sight he has, Perk has no regrets about having the device implanted. And while he no longer trusts Second Sight, he is looking forward to possibly obtaining more advanced implants from companies in the Netherlands and Australia working on their own products.
Doerr suggests that biotech firms whose implants are distributed globally be bound to some sort of international treaty requiring them to service their products in perpetuity. Such treaties are still applied to the salvage rights for ships that sunk centuries ago, he notes.
“I think that in a global tech economy, that would be a good thing,” says McLean, the fellow at Santa Clara, “but I am not optimistic about it in the near term. Business incentives push toward return on share to stockholders, not to patients and other stakeholders. We likely need to rely on some combination of corporately responsibility…and [international] government regulation. It’s tough—the Paris Climate Accord implementation at a slow walk comes to mind.”
Unlike Perk, Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market. At 70, Doerr says he does not have the time or energy to hold the company more accountable. And with Second Sight having gone through a considerable corporate reorganization, Doerr believes a lawsuit to compel it to better serve its Argus recipients would be nothing but an extremely costly longshot.
“It’s corporate America at its best,” he observes.
Story by Big Think
Our gut microbiome plays a substantial role in our health and well-being. Most research, however, focuses on bacteria, rather than the viruses that hide within them. Now, research from the University of Copenhagen, newly published in Nature Microbiology, found that people who live past age 100 have a greater diversity of bacteria-infecting viruses in their intestines than younger people. Furthermore, they found that the viruses are linked to changes in bacterial metabolism that may support mucosal integrity and resistance to pathogens.
The microbiota and aging
In the early 1970s, scientists discovered that the composition of our gut microbiota changes as we age. Recent studies have found that the changes are remarkably predictable and follow a pattern: The microbiota undergoes rapid, dramatic changes as toddlers transition to solid foods; further changes become less dramatic during childhood as the microbiota strikes a balance between the host and the environment; and as that balance is achieved, the microbiota remains mostly stable during our adult years (ages 18-60). However, that stability is lost as we enter our elderly years, and the microbiome undergoes dramatic reorganization. This discovery led scientists to question what causes this change and what effect it has on health.
Centenarians have a distinct gut community enriched in microorganisms that synthesize potent antimicrobial molecules that can kill multidrug-resistant pathogens.
“We are always eager to find out why some people live extremely long lives. Previous research has shown that the intestinal bacteria of old Japanese citizens produce brand-new molecules that make them resistant to pathogenic — that is, disease-promoting — microorganisms. And if their intestines are better protected against infection, well, then that is probably one of the things that cause them to live longer than others,” said Joachim Johansen, a researcher at the University of Copenhagen.
In 2021, a team of Japanese scientists set out to characterize the effect of this change on older people’s health. They specifically wanted to determine if people who lived to be over 100 years old — that is, centenarians — underwent changes that provided them with unique benefits. They discovered centenarians have a distinct gut community enriched in microorganisms that synthesize potent antimicrobial molecules that can kill multidrug-resistant pathogens, including Clostridioides difficile and Enterococcus faecium. In other words, the late-life shift in microbiota reduces an older person’s susceptibility to common gut pathogens.
Viruses can change alter the genes of bacteria
Although the late-in-life microbiota change could be beneficial to health, it remained unclear what facilitated this shift. To solve this mystery, Johansen and his colleagues turned their attention to an often overlooked member of the microbiome: viruses. “Our intestines contain billions of viruses living inside bacteria, and they could not care less about human cells; instead, they infect the bacterial cells. And seeing as there are hundreds of different types of bacteria in our intestines, there are also lots of bacterial viruses,” said Simon Rasmussen, Johansen’s research advisor.
Centenarians had a more diverse virome, including previously undescribed viral genera.
For decades, scientists have explored the possibility of phage therapy — that is, using viruses that infect bacteria (called bacteriophages or simply phages) to kill pathogens. However, bacteriophages can also enhance the bacteria they infect. For example, they can provide genes that help their bacterial host attack other bacteria or provide new metabolic capabilities. Both of these can change which bacteria colonize the gut and, in turn, protect against certain disease states.
Intestinal viruses give bacteria new abilities
Johansen and his colleagues were interested in what types of viruses centenarians had in their gut and whether those viruses carried genes that altered metabolism. They compared fecal samples of healthy centenarians (100+ year-olds) with samples from younger patients (18-100 year-olds). They found that the centenarians had a more diverse virome, including previously undescribed viral genera.
They also revealed an enrichment of genes supporting key steps in the sulfate metabolic pathway. The authors speculate that this translates to increased levels of microbially derived sulfide, which may lead to health-promoting outcomes, such as supporting mucosal integrity and resistance to potential pathogens.
“We have learned that if a virus pays a bacterium a visit, it may actually strengthen the bacterium. The viruses we found in the healthy Japanese centenarians contained extra genes that could boost the bacteria,” said Johansen.
Simon Rasmussen added, “If you discover bacteria and viruses that have a positive effect on the human intestinal flora, the obvious next step is to find out whether only some or all of us have them. If we are able to get these bacteria and their viruses to move in with the people who do not have them, more people could benefit from them.”
This article originally appeared on Big Think, home of the brightest minds and biggest ideas of all time.
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Embrace the mess: how to choose which scientists to trust
It’s no easy task these days for people to pick the scientists they should follow. According to a recent poll by NORC at the University of Chicago, only 39 percent of Americans have a "great deal" of confidence in the scientific community. The finding is similar to Pew research last year showing that 29 percent of Americans have this level of confidence in medical scientists.
Not helping: All the money in science. Just 20 percent of Pew’s survey respondents think scientists are transparent about conflicts of interest with industry. While this issue is common to many fields, the recent gold rush to foot the bill for research on therapies for healthy aging may be contributing to the overall sense of distrust. “There’s a feeling that at some point, the FDA may actually designate aging as a disease,” said Pam Maher, a neuroscientist who studies aging at Salk Institute. “That may be another impetus for a lot of these companies to start up.”
But partnering with companies is an important incentive for researchers across biomedical fields. Many scientists – with and without financial ties and incentives – are honest, transparent and doing important, inspiring work. I asked more than a dozen bioethicists and researchers in aging how to spot the scientists who are searching for the truth more than money, ego or fame.
Avoid Scientists Who Sound Overly Confident in messaging to the public. Some multi-talented scientists are adept at publishing in both top journals and media outlets. They’re great at dropping science without the confusing jargon, in ways the public can enjoy and learn from.
But do they talk in simple soundbites, painting scientific debates in pastels or black and white when colleagues use shades of gray? Maybe they crave your attention more than knowledge seeking. “When scientists speak in a very unnuanced way, that can be irresponsible,” said Josephine Johnston, a bioethicist at the Hastings Center.
Scientists should avoid exaggerations like “without a doubt” and even “we know” – unless they absolutely do. “I feel like there’s more and more hyperbole and attention seeking…[In aging research,] the loudest voices in the room are the fringe people,” said the biogenerontologist Matt Kaeberlein.
Separate Hype from Passion. Scientists should be, need to be passionate, Johnston explained. In the realm of aging, for example, Leonard Guarente, an MIT biologist and pioneer in the field of aging, told me about his belief that longer lifespans would make for a better world.
Instead of expecting scientists to be lab-dwelling robots, we should welcome their passion. It fuels scientific dedication and creativity. Fields like aging, AI and gene editing inspire the imaginations of the public and scientists alike. That’s not a bad thing.
But it does lay fertile ground for overstatements, such as claims by some that the first 1,000-year-old has already been born. If it sounds like sci-fi, it’s probably sci-fi.
Watch Out for Cult Behavior, some experts told me. Follow scientists who mix it up and engage in debates, said NYU bioethicist Arthur Caplan, not those who hang out only with researchers in the same ideological camp.
Look for whether they’re open to working with colleagues who don’t share their views. Through collaboration, they can resolve conflicting study results and data, said Danica Chen, a biologist at UC Berkeley. We should trust science as long as it doesn’t trust itself.
Messiness is Good. You want to find and follow scientists who’ve published research over the years that does not tell a clean story. “Our goal is to disprove our models,” Kaeberlein said. Scientific findings and views should zig and zag as their careers – and science – progress.
Follow scientists who write and talk publicly about new evidence that’s convinced them to reevaluate their own positions. Who embrace the inherent messiness of science – that’s the hallmark of an honest researcher.
The flipside is a very linear publishing history. Some scientists have a pet theory they’ve managed to support with more and more evidence over time, like a bricklayer gradually, flawlessly building the prettiest house in the neighborhood. Too pretty.
There’s a dark side to this charming simplicity: scientists sometimes try and succeed at engineering the very findings they’re hoping to get, said Charles Brenner, a biochemist at City of Hope National Medical Center.
These scientists “try to prove their model and ignore data that doesn’t fit their model because everybody likes a clean story,” Kaeberlein said. “People want to become famous,” said Samuel Klein, a biologist at Washington University. “So there’s always that bias to try to get positive results.”
Don’t Overvalue Credentials. Just because a scientist works at a top university doesn’t mean they’re completely trustworthy. “The institution means almost nothing,” Kaeberlein said.
Same goes for publishing in top journals, Kaeberlein added. “There’s an incentive structure that favors poor quality science and irreproducible results in high profile journals.”
Traditional proxies for credibility aren’t quite as reliable these days. Shortcuts don’t cut it anymore; you’ve got to scrutinize the actual research the scientist is producing. “You have to look at the literature and try to interpret it for yourself,” said Rafael de Cabo, a scientist at the National Institute on Aging, run by the U.S. National Institutes of Health. Or find journalists you trust to distill this information for you, Klein suggested.
Consider Company Ties. Companies can help scientists bring their research to the public more directly and efficiently than the slower grind of academia, where “the opportunities and challenges weren’t big enough for me,” said Kaeberlein, who left the University of Washington earlier this year.
"It’s generally not universities that can take technology through what we call the valley of death,” Brenner said. “There are rewards associated with taking risks.”
Many scientists are upfront about their financial conflicts of interest – sometimes out of necessity. “At a place like Duke, our conflicts of interest are very closely managed, said Matthew Hirschey, who researchers metabolism at Duke’s Molecular Physiology Institute. “We have to be incredibly explicit about our partnerships.”
But the willingness to disclose conflicts doesn’t necessarily mean the scientist is any less biased. Those conflicts can still affect their views and outcomes of their research, said Johnston, the Hastings bioethicist.
“The proof is in the pudding, and it’s got to be done by people who are not vested in making money off the results,” Klein said. Worth noting: even if scientists eschew companies, they’re almost always financially motivated to get grants for their research.
Bottom line: lots of scientists work for and with companies, and many are highly trustworthy leaders in their fields. But if a scientist is in thick with companies and checks some of the other boxes on this list, their views and research may be compromised.