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 bydesign 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.
Here's how one doctor overcame extraordinary odds to help create the birth control pill
Dr. Percy Julian had so many personal and professional obstacles throughout his life, it’s amazing he was able to accomplish anything at all. But this hidden figure not only overcame these incredible obstacles, he also laid the foundation for the creation of the birth control pill.
Julian’s first obstacle was growing up in the Jim Crow-era south in the early part of the twentieth century, where racial segregation kept many African-Americans out of schools, libraries, parks, restaurants, and more. Despite limited opportunities and education, Julian was accepted to DePauw University in Indiana, where he majored in chemistry. But in college, Julian encountered another obstacle: he wasn’t allowed to stay in DePauw’s student housing because of segregation. Julian found lodging in an off-campus boarding house that refused to serve him meals. To pay for his room, board, and food, Julian waited tables and fired furnaces while he studied chemistry full-time. Incredibly, he graduated in 1920 as valedictorian of his class.
After graduation, Julian landed a fellowship at Harvard University to study chemistry—but here, Julian ran into yet another obstacle. Harvard thought that white students would resent being taught by Julian, an African-American man, so they withdrew his teaching assistantship. Julian instead decided to complete his PhD at the University of Vienna in Austria. When he did, he became one of the first African Americans to ever receive a PhD in chemistry.
Julian received offers for professorships, fellowships, and jobs throughout the 1930s, due to his impressive qualifications—but these offers were almost always revoked when schools or potential employers found out Julian was black. In one instance, Julian was offered a job at the Institute of Paper Chemistory in Appleton, Wisconsin—but Appleton, like many cities in the United States at the time, was known as a “sundown town,” which meant that black people weren’t allowed to be there after dark. As a result, Julian lost the job.
During this time, Julian became an expert at synthesis, which is the process of turning one substance into another through a series of planned chemical reactions. Julian synthesized a plant compound called physostigmine, which would later become a treatment for an eye disease called glaucoma.
In 1936, Julian was finally able to land—and keep—a job at Glidden, and there he found a way to extract soybean protein. This was used to produce a fire-retardant foam used in fire extinguishers to smother oil and gasoline fires aboard ships and aircraft carriers, and it ended up saving the lives of thousands of soldiers during World War II.
At Glidden, Julian found a way to synthesize human sex hormones such as progesterone, estrogen, and testosterone, from plants. This was a hugely profitable discovery for his company—but it also meant that clinicians now had huge quantities of these hormones, making hormone therapy cheaper and easier to come by. His work also laid the foundation for the creation of hormonal birth control: Without the ability to synthesize these hormones, hormonal birth control would not exist.
Julian left Glidden in the 1950s and formed his own company, called Julian Laboratories, outside of Chicago, where he manufactured steroids and conducted his own research. The company turned profitable within a year, but even so Julian’s obstacles weren’t over. In 1950 and 1951, Julian’s home was firebombed and attacked with dynamite, with his family inside. Julian often had to sit out on the front porch of his home with a shotgun to protect his family from violence.
But despite years of racism and violence, Julian’s story has a happy ending. Julian’s family was eventually welcomed into the neighborhood and protected from future attacks (Julian’s daughter lives there to this day). Julian then became one of the country’s first black millionaires when he sold his company in the 1960s.
When Julian passed away at the age of 76, he had more than 130 chemical patents to his name and left behind a body of work that benefits people to this day.
Therapies for Healthy Aging with Dr. Alexandra Bause
My guest today is Dr. Alexandra Bause, a biologist who has dedicated her career to advancing health, medicine and healthier human lifespans. Dr. Bause co-founded a company called Apollo Health Ventures in 2017. Currently a venture partner at Apollo, she's immersed in the discoveries underway in Apollo’s Venture Lab while the company focuses on assembling a team of investors to support progress. Dr. Bause and Apollo Health Ventures say that biotech is at “an inflection point” and is set to become a driver of important change and economic value.
Previously, Dr. Bause worked at the Boston Consulting Group in its healthcare practice specializing in biopharma strategy, among other priorities
She did her PhD studies at Harvard Medical School focusing on molecular mechanisms that contribute to cellular aging, and she’s also a trained pharmacist
In the episode, we talk about the present and future of therapeutics that could increase people’s spans of health, the benefits of certain lifestyle practice, the best use of electronic wearables for these purposes, and much more.
Dr. Bause is at the forefront of developing interventions that target the aging process with the aim of ensuring that all of us can have healthier, more productive lifespans.
