Should Your Employer Have Access to Your Fitbit Data?

A woman using a wearable device to track her fitness activities.
The modern world today has become more dependent on technology than ever. We want to achieve maximal tasks with minimal human effort. And increasingly, we want our technology to go wherever we go.
Wearable devices operate by collecting massive amounts of personal information on unsuspecting users.
At work, we are leveraging the immense computing power of tablet computers. To supplement social interaction, we have turned to smartphones and social media. Lately, another novel and exciting technology is on the rise: wearable devices that track our personal data, like the FitBit and the Apple Watch. The interest and demand for these devices is soaring. CCS Insight, an organization that studies developments in digital markets, has reported that the market for wearables will be worth $25 billion by next year. By 2020, it is estimated that a staggering 411 million smart wearable devices will be sold.
Although wearables include smartwatches, fitness bands, and VR/AR headsets, devices that monitor and track health data are gaining most of the traction. Apple has announced the release of Apple Health Records, a new feature for their iOS operating system that will allow users to view and store medical records on their smart devices. Hospitals such as NYU Langone have started to use this feature on Apple Watch to send push notifications to ER doctors for vital lab results, so that they can review and respond immediately. Previously, Google partnered with Novartis to develop smart contact lens that can monitor blood glucose levels in diabetic patients, although the idea has been in limbo.
As these examples illustrate, these wearable devices present unique opportunities to address some of the most intractable problems in modern healthcare. At the same time, these devices operate by collecting massive personal information on unsuspecting users and pose unique ethical challenges regarding informed consent, user privacy, and health data security. If there is a lesson from the recent Facebook debacle, it is that big data applications, even those using anonymized data, are not immune from malicious third-party data-miners.
On consent: do users of wearable devices really know what they are getting into? There is very little evidence to support the claim that consent obtained on signing up can be considered 'informed.' A few months ago, researchers from Australia published an interesting study that surveyed users of wearable devices that monitor and track health data. The survey reported that users were "highly concerned" regarding issues of privacy and considered informed consent "very important" when asked about data sharing with third parties (for advertising or data analysis).
However, users were not aware of how privacy and informed consent were related. In essence, while they seemed to understand the abstract importance of privacy, they were unaware that clicking on the "I agree" dialog box entailed giving up control of their personal health information. This is not surprising, given that most user agreements for online applications or wearable devices are often in lengthy legalese.
Companies could theoretically use their employees' data to motivate desired behavior, throwing a modern wrench into the concept of work/life balance.
Privacy of health data is another unexamined ethical question. Although wearable devices have traditionally been used for promotion of healthy lifestyles (through fitness tracking) and ease of use (such as the call and message features on Apple Watch), increasing interest is coming from corporations. Tractica, a market research firm that studies trends in wearable devices, reports that corporate consumers will account for 17 percent of the market share in wearable devices by 2020 (current market share stands at 1 percent). This is because wearable devices, loaded with several sensors, provide unique insights to track workers' physical activity, stress levels, sleep, and health information. Companies could theoretically use this information to motivate desired behavior, throwing a modern wrench into the concept of work/life balance.
Since paying for employees' healthcare tends to be one of the largest expenses for employers, using wearable devices is seen as something that can boost the bottom line, while enhancing productivity. Even if one considers it reasonable to devise policies that promote productivity, we have yet to determine ethical frameworks that can prevent discrimination against those who may not be able-bodied, and to determine how much control employers ought to exert over the lifestyle of employees.
To be clear, wearable smart devices can address unique challenges in healthcare and elsewhere, but the focus needs to shift toward the user's needs. Data collection practices should also reflect this shift.
Privacy needs to be incorporated by design and not as an afterthought. If we were to read privacy policies properly, it could take some 180 to 300 hours per year per person. This needs to change. Privacy and consent policies ought to be in clear, simple language. If using your device means ultimately sharing your data with doctors, food manufacturers, insurers, companies, dating apps, or whoever might want access to it, then you should know that loud and clear.
The recent implementation of European Union's General Data Protection Regulation (GDPR) is also a move in the right direction. These protections include firm guidelines for consent, and an ability to withdraw consent; a right to access data, and to know what is being done with user's collected data; inherent privacy protections; notifications of security breach; and, strict penalties for companies that do not comply. For wearable devices in healthcare, collaborations with frontline providers would also reveal which areas can benefit from integrating wearable technology for maximum clinical benefit.
In our pursuit of advancement, we must not erode fundamental rights to privacy and security, and not infringe on the rights of the vulnerable and marginalized.
If current trends are any indication, wearable devices will play a central role in our future lives. In fact, the next generation of wearables will be implanted under our skin. This future is already visible when looking at the worrying rise in biohacking – or grinding, or cybernetic enhancement – where people attempt to enhance the physical capabilities of their bodies with do-it-yourself cybernetic devices (using hacker ethics to justify the practice).
Already, a company in Wisconsin called Three Square Market has become the first U.S. employer to provide rice-grained-sized radio-frequency identification (RFID) chips implanted under the skin between the thumb and forefinger of their employees. The company stated that these RFID chips (also available as wearable rings or bracelets) can be used to login to computers, open doors, or use the copy machines.
Humans have always used technology to push the boundaries of what we can do. But in our pursuit of advancement, we must not erode fundamental rights to privacy and security, and not infringe on the rights of the vulnerable and marginalized. The rise of powerful wearables will also necessitate a global discussion on moral questions such as: what are the boundaries for artificially enhancing the human body, and is hacking our bodies ethically acceptable? We should think long and hard before we answer.
How to Live With and Love Bugs with Jessica Ware
Entomologist Jessica Ware is using new technologies to identify insect species in a changing climate. She shares her suggestions for how we can live harmoniously with creeper crawlers everywhere.
Jessica Ware is obsessed with bugs.
My guest today is a leading researcher on insects, the president of the Entomological Society of America and a curator at the American Museum of Natural History. Learn more about her here.
You may not think that insects and human health go hand-in-hand, but as Jessica makes clear, they’re closely related. A lot of people care about their health, and the health of other creatures on the planet, and the health of the planet itself, but researchers like Jessica are studying another thing we should be focusing on even more: how these seemingly separate areas are deeply entwined. (This is the theme of an upcoming event hosted by Leaps.org and the Aspen Institute.)
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Entomologist Jessica Ware
D. Finnin / AMNH
Maybe it feels like a core human instinct to demonize bugs as gross. We seem to try to eradicate them in every way possible, whether that’s with poison, or getting out our blood thirst by stomping them whenever they creep and crawl into sight.
But where did our fear of bugs really come from? Jessica makes a compelling case that a lot of it is cultural, rather than in-born, and we should be following the lead of other cultures that have learned to live with and appreciate bugs.
The truth is that a healthy planet depends on insects. You may feel stung by that news if you hate bugs. Reality bites.
Jessica and I talk about whether learning to live with insects should include eating them and gene editing them so they don’t transmit viruses. She also tells me about her important research into using genomic tools to track bugs in the wild to figure out why and how we’ve lost 50 percent of the insect population since 1970 according to some estimates – bad news because the ecosystems that make up the planet heavily depend on insects. Jessica is leading the way to better understand what’s causing these declines in order to start reversing these trends to save the insects and to save ourselves.
Matt Fuchs is the editor-in-chief of Leaps.org. He is also a contributing reporter to the Washington Post and has written for the New York Times, Time Magazine, WIRED and the Washington Post Magazine, among other outlets. Follow him on Twitter @fuchswriter.
They received retinal implants to restore their vision. Then the company turned its back on them.
A company called Second Sight made an implant that partially restored vision to people who'd been blind for decades. But when Second Sight pivoted, it stopped servicing its product, leaving many in the dark.
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.