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.
The white two-seater car that rolls down the street in the Sorrento Valley of San Diego looks like a futuristic batmobile, with its long aerodynamic tail and curved underbelly. Called 'Sol' (Spanish for "sun"), it runs solely on solar and could be the future of green cars. Its maker, the California startup Aptera, has announced the production of Sol, the world's first mass-produced solar vehicle, by the end of this year. Aptera co-founder Chris Anthony points to the sky as he says, "On this sunny California day, there is ample fuel. You never need to charge the car."
If you live in a sunny state like California or Florida, you might never need to plug in the streamlined Sol because the solar panels recharge while driving and parked. Its 60-mile range is more than the average commuter needs. For cloudy weather, battery packs can be recharged electronically for a range of up to 1,000 miles. The ultra-aerodynamic shape made of lightweight materials such as carbon, Kevlar, and hemp makes the Sol four times more energy-efficient than a Tesla, according to Aptera. "The material is seven times stronger than steel and even survives hail or an angry ex-girlfriend," Anthony promises.
Co-founder Steve Fambro opens the Sol's white doors that fly upwards like wings and I get inside for a test drive. Two dozen square solar panels, each the size of a large square coaster, on the roof, front, and tail power the car. The white interior is spartan; monitors have replaced mirrors and the dashboard. An engineer sits in the driver's seat, hits the pedal, and the low-drag two-seater zooms from 0 to 60 in 3.5 seconds.
It feels like sitting in a race car because the two-seater is so low to the ground but the car is built to go no faster than 100 or 110 mph. The finished car will weigh less than 1,800 pounds, about half of the smallest Tesla. The average car, by comparison, weighs more than double that. "We've built it primarily for energy efficiency," Steve Fambro says, explaining why the Sol has only three wheels. It's technically an "auto-cycle," a hybrid between a motorcycle and a car, but Aptera's designers are also working to design a four-seater.
There has never been a lack of grand visions for the future of the automobile, but until these solar cars actually hit the streets, nobody knows how the promises will hold up.
Transportation is currently the biggest source of greenhouse gases. Developing an efficient solar car that does not burden the grid has been the dream of innovators for decades. Every other year, dozens of innovators race their self-built solar cars 2,000 miles through the Australian desert.
More effective solar panels are finally making the dream mass-compatible, but just like other innovative car ideas, Aptera's vision has been plagued with money problems. Anthony and Fambro were part of the original crew that founded Aptera in 2006 and worked on the first prototype around the same time Tesla built its first roadster, but Aptera went bankrupt in 2011. Anthony and Fambro left a year before the bankruptcy and went on to start other companies. Among other projects, Fambro developed the first USDA organic vertical farm in the United Arab Emirates, and Anthony built a lithium battery company, before the two decided to buy Aptera back. Without a billionaire such as Elon Musk bankrolling the risky process of establishing a whole new car production system from scratch, the huge production costs are almost insurmountable.
But Aptera's founders believe they have found solutions for the entire production process as well as the car design. Most parts of the Sol's body can be made by 3D printers and assembled like a Lego kit. If this makes you think of a toy car, Anthony assures potential buyers that the car aced stress tests and claims it's safer than any vehicle on the market, "because the interior is shaped like an egg and if there is an impact, the pressure gets distributed equally." However, Aptera has yet to release crash test safety data so outside experts cannot evaluate their claims.
Instead of building a huge production facility, Anthony and Fambro envision "micro-factories," each less than 10,000 square feet, where a small crew can assemble cars on demand wherever the orders are highest, be it in California, Canada, or China.
If a part of the Sol breaks, Aptera promises to send replacement parts to any corner of the world within 24 hours, with instructions. So a mechanic in a rural corner in Arkansas or China who never worked on a solar car before simply needs to download the instructions and replace the broken part. At least that's the idea. "The material does not rust nor fatigue," Fambro promises. "You can pass the car onto your grandchildren. When more efficient solar panels hit the market, we simply replace them."
More than 11,000 potential buyers have already signed up; the cheapest model costs around $26,000 USD and Aptera expects the first cars to ship by the end of the year.
Two other solar carmakers are vying for the pole position in the race to be the first to market: The German startup Sono has also announced it will also produce its first solar car by the end of this year. The price tag for the basic model is also around $26,000, but its concept is very different. From the outside, the Sion looks like a conservative minivan for a family; only a closer look reveals that the dark exterior is made of solar panels. Sono, too, nearly went bankrupt a few years ago and was saved through a crowdfunding campaign by enthusiastic fans.
Meanwhile, Norwegian company Lightyear wants to produce a sleek solar-powered luxury sedan by the end of the year, but its price of around $180,000 makes it unaffordable for most buyers.
There has never been a lack of grand visions for the future of the automobile, but until these solar cars actually hit the streets, nobody knows how the promises will hold up. How often will the cars need to be repaired? What happens when snow and ice cover the solar panels? Also, you can't park the car in a garage if you need the sun to charge it.
Critics, including students at the Solar Car team at the University of Michigan, say that mounting solar panels on a moving vehicle will never yield the most efficient results compared to static panels. Also, they are quick to point out that no company has managed to overcome the production hurdles yet. Others in the field also wonder how well the solar panels will actually work.
"It's important to realize that the solar mileage claims by these companies are likely the theoretical best case scenario but in the real world, solar range will be significantly less when you factor in shading, parking in garages, and geographies with lower solar irradiance," says Evan Stumpges, the team coordinator for the American Solar Challenge, a competition in which enthusiasts build and race solar-powered cars. "The encouraging thing is that I have seen videos of real working prototypes for each of these vehicles which is a key accomplishment. That said, I believe the biggest hurdle these companies have yet to face is successfully ramping up to volume production and understanding what their profitability point will be for selling the vehicles once production has stabilized."
Professor Daniel M. Kammen, the founding director of the Renewable and Appropriate Energy Laboratory at the University of California, Berkeley, and one of the world's foremost experts on renewable energy, believes that the technical challenges have been solved, and that solar cars have real advantages over electric vehicles.
"This is the right time to be bullish. Cutting out the charging is a natural solution for long rides," he says. "These vehicles are essentially solar panels and batteries on wheels. These are now record low-cost and can be built from sustainable materials." Apart from Aptera's no-charge technology, he appreciates the move toward no-conflict materials. "Not only is the time ripe but the youth movement is pushing toward conflict-free material and reducing resource waste....A low-cost solar fleet could be really interesting in relieving burden on the grid, or you could easily imagine a city buying a bunch of them and connecting them with mass transit." While he has followed all three new solar companies with interest, he has already ordered an Aptera car for himself, "because it's American and it looks the most different."
After taking a spin in the Sol, it is startling to switch back into a regular four-seater. Rolling out of Aptera's parking lot onto the freeway next to all the oversized gas guzzlers that need to stop every couple of hundreds of miles to fill up, one can't help but think: We've just taken a trip into the future.
Last summer, when fast and cheap Covid tests were in high demand and governments were struggling to manufacture and distribute them, a group of independent scientists working together had a bit of a breakthrough.
Working on the Just One Giant Lab platform, an online community that serves as a kind of clearing house for open science researchers to find each other and work together, they managed to create a simple, one-hour Covid test that anyone could take at home with just a cup of hot water. The group tested it across a network of home and professional laboratories before being listed as a semi-finalist team for the XPrize, a competition that rewards innovative solutions-based projects. Then, the group hit a wall: they couldn't commercialize the test.
They wanted to keep their project open source, making it accessible to people around the world, so they decided to forgo traditional means of intellectual property protection and didn't seek patents. (They couldn't afford lawyers anyway). And, as a loose-knit group that was not supported by a traditional scientific institution, working in community labs and homes around the world, they had no access to resources or financial support for manufacturing or distributing their test at scale.
But without ethical and regulatory approval for clinical testing, manufacture, and distribution, they were legally unable to create field tests for real people, leaving their inexpensive, $16-per-test, innovative product languishing behind, while other, more expensive over-the-counter tests made their way onto the market.
Who Are These Radical Scientists?
Independent, decentralized biomedical research has come of age. Also sometimes called DIYbio, biohacking, or community biology, depending on whom you ask, open research is today a global movement with thousands of members, from scientists with advanced degrees to middle-grade students. Their motivations and interests vary across a wide spectrum, but transparency and accessibility are key to the ethos of the movement. Teams are agile, focused on shoestring-budget R&D, and aim to disrupt business as usual in the ivory towers of the scientific establishment.
Ethics oversight is critical to ensuring that research is conducted responsibly, even by biohackers.
Initiatives developed within the community, such as Open Insulin, which hopes to engineer processes for affordable, small-batch insulin production, "Slybera," a provocative attempt to reverse engineer a $1 million dollar gene therapy, and the hundreds of projects posted on the collaboration platform Just One Giant Lab during the pandemic, all have one thing in common: to pursue testing in humans, they need an ethics oversight mechanism.
These groups, most of which operate collaboratively in community labs, homes, and online, recognize that some sort of oversight or guidance is useful—and that it's the right thing to do.
But also, and perhaps more immediately, they need it because federal rules require ethics oversight of any biomedical research that's headed in the direction of the consumer market. In addition, some individuals engaged in this work do want to publish their research in traditional scientific journals, which—you guessed it—also require that research has undergone an ethics evaluation. Ethics oversight is critical to ensuring that research is conducted responsibly, even by biohackers.
Bridging the Ethics Gap
The problem is that traditional oversight mechanisms, such as institutional review boards at government or academic research institutions, as well as the private boards utilized by pharmaceutical companies, are not accessible to most independent researchers. Traditional review boards are either closed to the public, or charge fees that are out of reach for many citizen science initiatives. This has created an "ethics gap" in nontraditional scientific research.
Biohackers are seen in some ways as the direct descendents of "white hat" computer hackers, or those focused on calling out security holes and contributing solutions to technical problems within self-regulating communities. In the case of health and biotechnology, those problems include both the absence of treatments and the availability of only expensive treatments for certain conditions. As the DIYbio community grows, there needs to be a way to provide assurance that, when the work is successful, the public is able to benefit from it eventually. The team that developed the one-hour Covid test found a potential commercial partner and so might well overcome the oversight hurdle, but it's been 14 months since they developed the test--and counting.
In short, without some kind of oversight mechanism for the work of independent biomedical researchers, the solutions they innovate will never have the opportunity to reach consumers.
In a new paper in the journal Citizen Science: Theory & Practice, we consider the issue of the ethics gap and ask whether ethics oversight is something nontraditional researchers want, and if so, what forms it might take. Given that individuals within these communities sometimes vehemently disagree with each other, is consensus on these questions even possible?
We learned that there is no "one size fits all" solution for ethics oversight of nontraditional research. Rather, the appropriateness of any oversight model will depend on each initiative's objectives, needs, risks, and constraints.
We also learned that nontraditional researchers are generally willing (and in some cases eager) to engage with traditional scientific, legal, and bioethics experts on ethics, safety, and related questions.
We suggest that these experts make themselves available to help nontraditional researchers build infrastructure for ethics self-governance and identify when it might be necessary to seek outside assistance.
Independent biomedical research has promise, but like any emerging science, it poses novel ethical questions and challenges. Existing research ethics and oversight frameworks may not be well-suited to answer them in every context, so we need to think outside the box about what we can create for the future. That process should begin by talking to independent biomedical researchers about their activities, priorities, and concerns with an eye to understanding how best to support them.
Christi Guerrini, JD, MPH studies biomedical citizen science and is an Associate Professor at Baylor College of Medicine. Alex Pearlman, MA, is a science journalist and bioethicist who writes about emerging issues in biotechnology. They have recently launched outlawbio.org, a place for discussion about nontraditional research.