Should Your Employer Have Access to Your Fitbit Data?
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.
A new injection is helping stave off RSV this season
In November 2021, Mickayla Wininger’s then one-month-old son, Malcolm, endured a terrifying bout with RSV, the respiratory syncytial (sin-SISH-uhl) virus—a common ailment that affects all age groups. Most people recover from mild, cold-like symptoms in a week or two, but RSV can be life-threatening in others, particularly infants.
Wininger, who lives in southern Illinois, was dressing Malcolm for bed when she noticed what seemed to be a minor irregularity with this breathing. She and her fiancé, Gavin McCullough, planned to take him to the hospital the next day. The matter became urgent when, in the morning, the boy’s breathing appeared to have stopped.
After they dialed 911, Malcolm started breathing again, but he ended up being hospitalized three times for RSV and defects in his heart. Eventually, he recovered fully from RSV, but “it was our worst nightmare coming to life,” Wininger recalled.
It’s a scenario that the federal government is taking steps to prevent. In July, the Food and Drug Administration approved a single-dose, long-acting injection to protect babies and toddlers. The injection, called Beyfortus, or nirsevimab, became available this October. It reduces the incidence of RSV in pre-term babies and other infants for their first RSV season. Children at highest risk for severe RSV are those who were born prematurely and have either chronic lung disease of prematurity or congenital heart disease. In those cases, RSV can progress to lower respiratory tract diseases such as pneumonia and bronchiolitis, or swelling of the lung’s small airway passages.
Each year, RSV is responsible for 2.1 million outpatient visits among children younger than five-years-old, 58,000 to 80,000 hospitalizations in this age group, and between 100 and 300 deaths, according to the Centers for Disease Control and Prevention. Transmitted through close contact with an infected person, the virus circulates on a seasonal basis in most regions of the country, typically emerging in the fall and peaking in the winter.
In August, however, the CDC issued a health advisory on a late-summer surge in severe cases of RSV among young children in Florida and Georgia. The agency predicts "increased RSV activity spreading north and west over the following two to three months.”
Infants are generally more susceptible to RSV than older people because their airways are very small, and their mechanisms to clear these passages are underdeveloped. RSV also causes mucus production and inflammation, which is more of a problem when the airway is smaller, said Jennifer Duchon, an associate professor of newborn medicine and pediatrics in the Icahn School of Medicine at Mount Sinai in New York.
In 2021 and 2022, RSV cases spiked, sending many to emergency departments. “RSV can cause serious disease in infants and some children and results in a large number of emergency department and physician office visits each year,” John Farley, director of the Office of Infectious Diseases in the FDA’s Center for Drug Evaluation and Research, said in a news release announcing the approval of the RSV drug. The decision “addresses the great need for products to help reduce the impact of RSV disease on children, families and the health care system.”
Sean O’Leary, chair of the committee on infectious diseases for the American Academy of Pediatrics, says that “we’ve never had a product like this for routine use in children, so this is very exciting news.” It is recommended for all kids under eight months old for their first RSV season. “I would encourage nirsevimab for all eligible children when it becomes available,” O’Leary said.
For those children at elevated risk of severe RSV and between the ages of 8 and 19 months, the CDC recommends one dose in their second RSV season.
The drug will be “really helpful to keep babies healthy and out of the hospital,” said O’Leary, a professor of pediatrics at the University of Colorado Anschutz Medical Campus/Children’s Hospital Colorado in Denver.
An antiviral drug called Synagis (palivizumab) has been an option to prevent serious RSV illness in high-risk infants since it was approved by the FDA in 1998. The injection must be given monthly during RSV season. However, its use is limited to “certain children considered at high risk for complications, does not help cure or treat children already suffering from serious RSV disease, and cannot prevent RSV infection,” according to the National Foundation for Infectious Diseases.
Until the approval this summer of the new monoclonal antibody, nirsevimab, there wasn’t a reliable method to prevent infection in most healthy infants.
Both nirsevimab and palivizumab are monoclonal antibodies that act against RSV. Monoclonal antibodies are lab-made proteins that mimic the immune system’s ability to fight off harmful pathogens such as viruses. A single intramuscular injection of nirsevimab preceding or during RSV season may provide protection.
The strategy with the new monoclonal antibody is “to extend protection to healthy infants who nonetheless are at risk because of their age, as well as infants with additional medical risk factors,” said Philippa Gordon, a pediatrician and infectious disease specialist in Brooklyn, New York, and medical adviser to Park Slope Parents, an online community support group.
No specific preventive measure is needed for older and healthier kids because they will develop active immunity, which is more durable. Meanwhile, older adults, who are also vulnerable to RSV, can receive one of two new vaccines. So can pregnant women, who pass on immunity to the fetus, Gordon said.
Until the approval this summer of the new monoclonal antibody, nirsevimab, there wasn’t a reliable method to prevent infection in most healthy infants, “nor is there any treatment other than giving oxygen or supportive care,” said Stanley Spinner, chief medical officer and vice president of Texas Children’s Pediatrics and Texas Children’s Urgent Care.
As with any virus, washing hands frequently and keeping infants and children away from sick people are the best defenses, Duchon said. This approach isn’t foolproof because viruses can run rampant in daycare centers, schools and parents’ workplaces, she added.
Mickayla Wininger, Malcolm’s mother, insists that family and friends wear masks, wash their hands and use hand sanitizer when they’re around her daughter and two sons. She doesn’t allow them to kiss or touch the children. Some people take it personally, but she would rather be safe than sorry.
Wininger recalls the severe anxiety caused by Malcolm's ordeal with RSV. After returning with her infant from his hospital stays, she was terrified to go to sleep. “My fiancé and I would trade shifts, so that someone was watching over our son 24 hours a day,” she said. “I was doing a night shift, so I would take caffeine pills to try and keep myself awake and would end up crashing early hours in the morning and wake up frantically thinking something happened to my son.”
Two years later, her anxiety has become more manageable, and Malcolm is doing well. “He is thriving now,” Wininger said. He recently had his second birthday and "is just the spunkiest boy you will ever meet. He looked death straight in the eyes and fought to be here today.”
Story by Big Think
For most of history, artificial intelligence (AI) has been relegated almost entirely to the realm of science fiction. Then, in late 2022, it burst into reality — seemingly out of nowhere — with the popular launch of ChatGPT, the generative AI chatbot that solves tricky problems, designs rockets, has deep conversations with users, and even aces the Bar exam.
But the truth is that before ChatGPT nabbed the public’s attention, AI was already here, and it was doing more important things than writing essays for lazy college students. Case in point: It was key to saving the lives of tens of millions of people.
AI-designed mRNA vaccines
As Dave Johnson, chief data and AI officer at Moderna, told MIT Technology Review‘s In Machines We Trust podcast in 2022, AI was integral to creating the company’s highly effective mRNA vaccine against COVID. Moderna and Pfizer/BioNTech’s mRNA vaccines collectively saved between 15 and 20 million lives, according to one estimate from 2022.
Johnson described how AI was hard at work at Moderna, well before COVID arose to infect billions. The pharmaceutical company focuses on finding mRNA therapies to fight off infectious disease, treat cancer, or thwart genetic illness, among other medical applications. Messenger RNA molecules are essentially molecular instructions for cells that tell them how to create specific proteins, which do everything from fighting infection, to catalyzing reactions, to relaying cellular messages.
Johnson and his team put AI and automated robots to work making lots of different mRNAs for scientists to experiment with. Moderna quickly went from making about 30 per month to more than one thousand. They then created AI algorithms to optimize mRNA to maximize protein production in the body — more bang for the biological buck.
For Johnson and his team’s next trick, they used AI to automate science, itself. Once Moderna’s scientists have an mRNA to experiment with, they do pre-clinical tests in the lab. They then pore over reams of data to see which mRNAs could progress to the next stage: animal trials. This process is long, repetitive, and soul-sucking — ill-suited to a creative scientist but great for a mindless AI algorithm. With scientists’ input, models were made to automate this tedious process.
“We don’t think about AI in the context of replacing humans,” says Dave Johnson, chief data and AI officer at Moderna. “We always think about it in terms of this human-machine collaboration, because they’re good at different things. Humans are really good at creativity and flexibility and insight, whereas machines are really good at precision and giving the exact same result every single time and doing it at scale and speed.”
All these AI systems were in put in place over the past decade. Then COVID showed up. So when the genome sequence of the coronavirus was made public in January 2020, Moderna was off to the races pumping out and testing mRNAs that would tell cells how to manufacture the coronavirus’s spike protein so that the body’s immune system would recognize and destroy it. Within 42 days, the company had an mRNA vaccine ready to be tested in humans. It eventually went into hundreds of millions of arms.
Biotech harnesses the power of AI
Moderna is now turning its attention to other ailments that could be solved with mRNA, and the company is continuing to lean on AI. Scientists are still coming to Johnson with automation requests, which he happily obliges.
“We don’t think about AI in the context of replacing humans,” he told the Me, Myself, and AI podcast. “We always think about it in terms of this human-machine collaboration, because they’re good at different things. Humans are really good at creativity and flexibility and insight, whereas machines are really good at precision and giving the exact same result every single time and doing it at scale and speed.”
Moderna, which was founded as a “digital biotech,” is undoubtedly the poster child of AI use in mRNA vaccines. Moderna recently signed a deal with IBM to use the company’s quantum computers as well as its proprietary generative AI, MoLFormer.
Moderna’s success is encouraging other companies to follow its example. In January, BioNTech, which partnered with Pfizer to make the other highly effective mRNA vaccine against COVID, acquired the company InstaDeep for $440 million to implement its machine learning AI across its mRNA medicine platform. And in May, Chinese technology giant Baidu announced an AI tool that designs super-optimized mRNA sequences in minutes. A nearly countless number of mRNA molecules can code for the same protein, but some are more stable and result in the production of more proteins. Baidu’s AI, called “LinearDesign,” finds these mRNAs. The company licensed the tool to French pharmaceutical company Sanofi.
Writing in the journal Accounts of Chemical Research in late 2021, Sebastian M. Castillo-Hair and Georg Seelig, computer engineers who focus on synthetic biology at the University of Washington, forecast that AI machine learning models will further accelerate the biotechnology research process, putting mRNA medicine into overdrive to the benefit of all.
This article originally appeared on Big Think, home of the brightest minds and biggest ideas of all time.