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 years or 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.
If you look back on the last century of scientific achievements, you might notice that most of the scientists we celebrate are overwhelmingly white, while scientists of color take a backseat. Since the Nobel Prize was introduced in 1901, for example, no black scientists have landed this prestigious award.
The work of black women scientists has gone unrecognized in particular. Their work uncredited and often stolen, black women have nevertheless contributed to some of the most important advancements of the last 100 years, from the polio vaccine to GPS.
Here are five black women who have changed science forever.
Dr. May Edward Chinn
Dr. May Edward Chinn practicing medicine in Harlem
George B. Davis, PhD.
Chinn was born to poor parents in New York City just before the start of the 20th century. Although she showed great promise as a pianist, playing with the legendary musician Paul Robeson throughout the 1920s, she decided to study medicine instead. Chinn, like other black doctors of the time, were barred from studying or practicing in New York hospitals. So Chinn formed a private practice and made house calls, sometimes operating in patients’ living rooms, using an ironing board as a makeshift operating table.
Chinn worked among the city’s poor, and in doing this, started to notice her patients had late-stage cancers that often had gone undetected or untreated for years. To learn more about cancer and its prevention, Chinn begged information off white doctors who were willing to share with her, and even accompanied her patients to other clinic appointments in the city, claiming to be the family physician. Chinn took this information and integrated it into her own practice, creating guidelines for early cancer detection that were revolutionary at the time—for instance, checking patient health histories, checking family histories, performing routine pap smears, and screening patients for cancer even before they showed symptoms. For years, Chinn was the only black female doctor working in Harlem, and she continued to work closely with the poor and advocate for early cancer screenings until she retired at age 81.
Alice Ball
Pictorial Press Ltd/Alamy
Alice Ball was a chemist best known for her groundbreaking work on the development of the “Ball Method,” the first successful treatment for those suffering from leprosy during the early 20th century.
In 1916, while she was an undergraduate student at the University of Hawaii, Ball studied the effects of Chaulmoogra oil in treating leprosy. This oil was a well-established therapy in Asian countries, but it had such a foul taste and led to such unpleasant side effects that many patients refused to take it.
So Ball developed a method to isolate and extract the active compounds from Chaulmoogra oil to create an injectable medicine. This marked a significant breakthrough in leprosy treatment and became the standard of care for several decades afterward.
Unfortunately, Ball died before she could publish her results, and credit for this discovery was given to another scientist. One of her colleagues, however, was able to properly credit her in a publication in 1922.
Henrietta Lacks
onathan Newton/The Washington Post/Getty
The person who arguably contributed the most to scientific research in the last century, surprisingly, wasn’t even a scientist. Henrietta Lacks was a tobacco farmer and mother of five children who lived in Maryland during the 1940s. In 1951, Lacks visited Johns Hopkins Hospital where doctors found a cancerous tumor on her cervix. Before treating the tumor, the doctor who examined Lacks clipped two small samples of tissue from Lacks’ cervix without her knowledge or consent—something unthinkable today thanks to informed consent practices, but commonplace back then.
As Lacks underwent treatment for her cancer, her tissue samples made their way to the desk of George Otto Gey, a cancer researcher at Johns Hopkins. He noticed that unlike the other cell cultures that came into his lab, Lacks’ cells grew and multiplied instead of dying out. Lacks’ cells were “immortal,” meaning that because of a genetic defect, they were able to reproduce indefinitely as long as certain conditions were kept stable inside the lab.
Gey started shipping Lacks’ cells to other researchers across the globe, and scientists were thrilled to have an unlimited amount of sturdy human cells with which to experiment. Long after Lacks died of cervical cancer in 1951, her cells continued to multiply and scientists continued to use them to develop cancer treatments, to learn more about HIV/AIDS, to pioneer fertility treatments like in vitro fertilization, and to develop the polio vaccine. To this day, Lacks’ cells have saved an estimated 10 million lives, and her family is beginning to get the compensation and recognition that Henrietta deserved.
Dr. Gladys West
Andre West
Gladys West was a mathematician who helped invent something nearly everyone uses today. West started her career in the 1950s at the Naval Surface Warfare Center Dahlgren Division in Virginia, and took data from satellites to create a mathematical model of the Earth’s shape and gravitational field. This important work would lay the groundwork for the technology that would later become the Global Positioning System, or GPS. West’s work was not widely recognized until she was honored by the US Air Force in 2018.
Dr. Kizzmekia "Kizzy" Corbett
TIME Magazine
At just 35 years old, immunologist Kizzmekia “Kizzy” Corbett has already made history. A viral immunologist by training, Corbett studied coronaviruses at the National Institutes of Health (NIH) and researched possible vaccines for coronaviruses such as SARS (Severe Acute Respiratory Syndrome) and MERS (Middle East Respiratory Syndrome).
At the start of the COVID pandemic, Corbett and her team at the NIH partnered with pharmaceutical giant Moderna to develop an mRNA-based vaccine against the virus. Corbett’s previous work with mRNA and coronaviruses was vital in developing the vaccine, which became one of the first to be authorized for emergency use in the United States. The vaccine, along with others, is responsible for saving an estimated 14 million lives.On today’s episode of Making Sense of Science, I’m honored to be joined by Dr. Paul Song, a physician, oncologist, progressive activist and biotech chief medical officer. Through his company, NKGen Biotech, Dr. Song is leveraging the power of patients’ own immune systems by supercharging the body’s natural killer cells to make new treatments for Alzheimer’s and cancer.
Whereas other treatments for Alzheimer’s focus directly on reducing the build-up of proteins in the brain such as amyloid and tau in patients will mild cognitive impairment, NKGen is seeking to help patients that much of the rest of the medical community has written off as hopeless cases, those with late stage Alzheimer’s. And in small studies, NKGen has shown remarkable results, even improvement in the symptoms of people with these very progressed forms of Alzheimer’s, above and beyond slowing down the disease.
In the realm of cancer, Dr. Song is similarly setting his sights on another group of patients for whom treatment options are few and far between: people with solid tumors. Whereas some gradual progress has been made in treating blood cancers such as certain leukemias in past few decades, solid tumors have been even more of a challenge. But Dr. Song’s approach of using natural killer cells to treat solid tumors is promising. You may have heard of CAR-T, which uses genetic engineering to introduce cells into the body that have a particular function to help treat a disease. NKGen focuses on other means to enhance the 40 plus receptors of natural killer cells, making them more receptive and sensitive to picking out cancer cells.
Paul Y. Song, MD is currently CEO and Vice Chairman of NKGen Biotech. Dr. Song’s last clinical role was Asst. Professor at the Samuel Oschin Cancer Center at Cedars Sinai Medical Center.
Dr. Song served as the very first visiting fellow on healthcare policy in the California Department of Insurance in 2013. He is currently on the advisory board of the Pritzker School of Molecular Engineering at the University of Chicago and a board member of Mercy Corps, The Center for Health and Democracy, and Gideon’s Promise.
Dr. Song graduated with honors from the University of Chicago and received his MD from George Washington University. He completed his residency in radiation oncology at the University of Chicago where he served as Chief Resident and did a brachytherapy fellowship at the Institute Gustave Roussy in Villejuif, France. He was also awarded an ASTRO research fellowship in 1995 for his research in radiation inducible gene therapy.
With Dr. Song’s leadership, NKGen Biotech’s work on natural killer cells represents cutting-edge science leading to key findings and important pieces of the puzzle for treating two of humanity’s most intractable diseases.
Show links
- Paul Song LinkedIn
- NKGen Biotech on Twitter - @NKGenBiotech
- NKGen Website: https://nkgenbiotech.com/
- NKGen appoints Paul Song
- Patient Story: https://pix11.com/news/local-news/long-island/promising-new-treatment-for-advanced-alzheimers-patients/
- FDA Clearance: https://nkgenbiotech.com/nkgen-biotech-receives-ind-clearance-from-fda-for-snk02-allogeneic-natural-killer-cell-therapy-for-solid-tumors/Q3 earnings data: https://www.nasdaq.com/press-release/nkgen-biotech-inc.-reports-third-quarter-2023-financial-results-and-business