Big Data Probably Knows More About You Than Your Friends Do
Data is the new oil. It is highly valuable, and it is everywhere, even if you're not aware of it. For example, it's there when you use social media. Sharing pictures on Facebook lets its facial recognition software peg you and your friends. Thanks to that software, now anywhere you visit that has installed cameras, your face can be identified and your actions recorded.
The big data revolution is advancing much faster than the ones before, and it carries both promises and perils for humanity.
It's there when you log into Twitter, posting one of the 230 million tweets per day, which up until last month were all archived by the Library of Congress and will be made public for research. These social media data can be used to predict your political affiliations, ethnicity, race, age, how close you are with your family and friends, your mental health, even when you are most likely to be grumpy or go to the gym. These data can also predict when you are apt to get sick and track how diseases are spreading.
In fact, tracking isn't limited to what you decide to share or public spaces anymore. Lab experiments show Comcast and other cable companies may soon be able to record and monitor movements in your house. They may also be able to read your lips and identify your visitors simply by assessing how Wi-Fi waves bounce off bodies and other objects in houses. In one study, MIT researchers used routers and sensors to monitor breathing and heart rates with 99% accuracy. Routers could soon be used for seemingly good things, like monitoring infant breathing and whether an older adult is about to take a big tumble. However, it may also enable unwanted and unparalleled levels of surveillance.
Some call the first digital pill a snitch pill, medication with a tattletale, and big brother in your belly.
Big data is there every time you pick up your smartphone, which can track your daily steps, where you go via geolocation, what time you wake up and go to bed, your punctuality, and even your overall health depending on which features you have enabled. Are you close with your mom; are you a sedentary couch potato; did you commit a murder (iPhone data was recently used in a German murder trial)? Smartphone-generated data can be used to label you---and not just you, your future and past generations too.
Smartphones are not the only "things" gathering data on you. Anything with an on and off switch can be connected to the internet and generate data. The new rule seems to be, if it can be, it will be, connected. Washing machines, coffee makers, medical appliances, cars, and even your luggage (yes, someone created a self-driving suitcase) can and are often generating data. "Smart" refrigerators can monitor your food levels and automatically create shopping lists and order food for you—while recording your alcohol consumption and whether you tend to be a healthy or junk food eater.
Even medicines can monitor behaviors. The first digital pill was just approved by the FDA last November to track whether patients take their medicines. It has a sensor that sends signals to a patient's smartphone, and others, when it encounters stomach acid. Some call it a snitch pill, medication with a tattletale, and big brother in your belly. Others see it as a major breakthrough to help patients remember to take their medications and to save payers millions of dollars.
Big data is there when you go shopping. Credit card and retail data can show whether you pay for a gym, if you are pregnant, have children, and your credit-worthiness. Uber and Lyft transactional data reveal what time you usually go to and leave work and who you regularly visit (Uber data has been used to catch cheating spouses).
Amazon now sells a bedroom camera to see your fashion choices and offer advice. It is marketing a more fashionable you, but it probably also wants the video feed showing your body measurements—they're "a newly prized currency," according to the Washington Post. They help retailers create more customized and better fitting clothes. Amazon also just partnered with Berkshire Hathaway and JPMorgan Chase, the largest bank in the United States by assets, to create an independent health-care company for their employees--raising privacy concerns as Amazon already owns so much data about us, from drones, devices, the AI of Alexa, and our viewing, eating, and other purchasing habits on Amazon Prime.
Data generation and storage can also be used to make the world better, safer and fairer.
Big data is arguably a new phenomenon; almost all the world's data (90%) were produced within the last 2 yearsor so. It is a result of the fusion of physical, digital, and biological technologies that together constitute the fourth industrial revolution, according to the World Economic Forum. Unlike the last three revolutions, involving the discoveries of steam power, electrical energy, and computers—this revolution is advancing much faster than the ones before and it carries both promises and perils for humanity.
Some people may want to opt out of all this tracking, reduce their digital footprint and stay "off the grid." However, it is worth noting that data generation and storage can be used for great things --- things that make the world better, safer and fairer. For example, sharing electronic health records and social media data can help scientists better track and understand diseases, develop new cures and therapies, and understand the safety and efficacy profiles of medicines and vaccines.
While full of promise, big data is not without its pitfalls. Data are often not interoperable or easily integrated. You can use your credit card practically anywhere in the world, but you cannot easily port your electronic health record to the doctor or hospital across the street, for example.
Data quality can also be poor. It is dependent on the person entering it. My electronic health record at one point said I was male, and I was pregnant at the time. No doctors or nurses seemed to notice. The problem is worse on a global level. For example, causes of death can be coded differently by country and village. Take HIV patients: they often develop secondary infections, like TB. Do you record the cause of death as TB or HIV? There isn't global consistency, and political pressure from patient groups can exert itself on death records. Often, each group wants to say they have the most deaths so they can fundraise more money.
Data can be biased. More than 80 percent of genomic data comes from Caucasians. Only 14 percent is from Asians and 3.5 percent is from African and Hispanic populations. Thus, when scientists use genomic data to develop drugs or lab tests, they may create biased products that work for only some demographics. Take type 2 diabetes blood tests; some do not work well for African Americans. One study estimates that 650,000 African Americans may have undiagnosed diabetes, because a common blood test doesn't work for them. Using biased data in medicine can be a matter of life and death. Moreover, if genomic medicine benefits only "a privileged few," the practice raises concerns about unequal access.
Large companies are selling data that originated from you and you are not sharing in the wealth.
We need to think carefully and be transparent about the values embedded in our data, data analytics (algorithms), and data applications. Numbers are never neutral. Algorithms are always embedded with subjective normative values--sometimes purposely, sometimes not. To address this problem, we need ethicists who can audit databanks and algorithms to identify embedded norms, values and biases and help ensure they are addressed or at least transparently disclosed. Additionally, we need to determine how to let people opt out of certain types of data collection and uses—and not just at the beginning of a system, but also at any point in their lifetimes. There is a right to be forgotten, which hasn't been adequately operationalized in today's data sphere.
What do you think happens to all of these data collected about us? The short answer is the public doesn't really know. A lot of it looks like what is in a medical record—i.e. height, weight, pregnancy status, age, mental health, pulse, blood pressure, and illness symptoms--- yet, it isn't protected by HIPPA, like your medical record information.
And it is being consolidated into the hands of fewer and fewer big players. Large companies are selling data that originated from you and you are not sharing in the wealth.
A possible solution is to create an app, managed by a nonprofit or public benefit corporation, through which you could download and manage all the data collected about you. For example, you could download your credit card statements with all your purchasing habits, your Uber rides showing transit patterns, medical records, electric bills, every digital record you have and would like to download--into one application. You would then have the power to license pieces or the collection of your data to users for a small fee for one year at a time. Uses and users could be monitored and audited leveraging blockchain capabilities. After the year is up, you can withdraw access.
You could be your own data landlord. We could democratize big data and empower people to better control and manage the wealth of information collected about us. Why should only the big companies like Amazon and Apple profit off the new oil? Let's create an app so we can all manage our data wealth and maybe even become data barons—an app created by the people for the people.
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
A sleek, four-foot tall white robot glides across a cafe storefront in Tokyo’s Nihonbashi district, holding a two-tiered serving tray full of tea sandwiches and pastries. The cafe’s patrons smile and say thanks as they take the tray—but it’s not the robot they’re thanking. Instead, the patrons are talking to the person controlling the robot—a restaurant employee who operates the avatar from the comfort of their home.
It’s a typical scene at DAWN, short for Diverse Avatar Working Network—a cafe that launched in Tokyo six years ago as an experimental pop-up and quickly became an overnight success. Today, the cafe is a permanent fixture in Nihonbashi, staffing roughly 60 remote workers who control the robots remotely and communicate to customers via a built-in microphone.
More than just a creative idea, however, DAWN is being hailed as a life-changing opportunity. The workers who control the robots remotely (known as “pilots”) all have disabilities that limit their ability to move around freely and travel outside their homes. Worldwide, an estimated 16 percent of the global population lives with a significant disability—and according to the World Health Organization, these disabilities give rise to other problems, such as exclusion from education, unemployment, and poverty.
These are all problems that Kentaro Yoshifuji, founder and CEO of Ory Laboratory, which supplies the robot servers at DAWN, is looking to correct. Yoshifuji, who was bedridden for several years in high school due to an undisclosed health problem, launched the company to help enable people who are house-bound or bedridden to more fully participate in society, as well as end the loneliness, isolation, and feelings of worthlessness that can sometimes go hand-in-hand with being disabled.
“It’s heartbreaking to think that [people with disabilities] feel they are a burden to society, or that they fear their families suffer by caring for them,” said Yoshifuji in an interview in 2020. “We are dedicating ourselves to providing workable, technology-based solutions. That is our purpose.”
Shota Kuwahara, a DAWN employee with muscular dystrophy. Ory Labs, Inc.
Wanting to connect with others and feel useful is a common sentiment that’s shared by the workers at DAWN. Marianne, a mother of two who lives near Mt. Fuji, Japan, is functionally disabled due to chronic pain and fatigue. Working at DAWN has allowed Marianne to provide for her family as well as help alleviate her loneliness and grief.Shota, Kuwahara, a DAWN employee with muscular dystrophy, agrees. "There are many difficulties in my daily life, but I believe my life has a purpose and is not being wasted," he says. "Being useful, able to help other people, even feeling needed by others, is so motivational."