As countries around the world combat the coronavirus outbreak, governments that already operated sophisticated surveillance programs are ramping up the tracking of their citizens.
"The potential for invasions of privacy, abuse, and stigmatization is enormous."
Countries like China, South Korea, Israel, Singapore and others are closely monitoring citizens to track the spread of the virus and prevent further infections, and policymakers in the United States have proposed similar steps. These shifts in policy have civil liberties defenders alarmed, as history has shown increases in surveillance tend to stick around after an emergency is over.
In China, where the virus originated and surveillance is already ubiquitous, the government has taken measures like having people scan a QR code and answer questions about their health and travel history to enter their apartment building. The country has also increased the tracking of cell phones, encouraged citizens to report people who appear to be sick, utilized surveillance drones, and developed facial recognition that can identify someone even if they're wearing a mask.
In Israel, the government has begun tracking people's cell phones without a court order under a program that was initially meant to counter terrorism. Singapore has also been closely tracking people's movements using cell phone data. In South Korea, the government has been monitoring citizens' credit card and cell phone data and has heavily utilized facial recognition to combat the spread of the coronavirus.
Here at home, the United States government and state governments have been using cell phone data to determine where people are congregating. White House senior adviser Jared Kushner's task force to combat the coronavirus outbreak has proposed using cell phone data to track coronavirus patients. Cities around the nation are also using surveillance drones to maintain social distancing orders. Companies like Apple and Google that work closely with the federal government are currently developing systems to track Americans' cell phones.
All of this might sound acceptable if you're worried about containing the outbreak and getting back to normal life, but as we saw when the Patriot Act was passed in 2001 in the wake of the 9/11 terrorist attacks, expansions of the surveillance state can persist long after the emergency that seemed to justify them.
Jay Stanley, senior policy analyst with the ACLU Speech, Privacy, and Technology Project, says that this public health emergency requires bold action, but he worries that actions may be taken that will infringe on our privacy rights.
"This is an extraordinary crisis that justifies things that would not be justified in ordinary times, but we, of course, worry that any such things would be made permanent," Stanley says.
Stanley notes that the 9/11 situation was different from this current situation because we still face the threat of terrorism today, and we always will. The Patriot Act was a response to that threat, even if it was an extreme response. With this pandemic, it's quite possible we won't face something like this again for some time.
"We know that for the last seven or eight decades, we haven't seen a microbe this dangerous become a pandemic, and it's reasonable to expect it's not going to be happening for a while afterward," Stanley says. "We do know that when a vaccine is produced and is produced widely enough, the COVID crisis will be over. This does, unlike 9/11, have a definitive ending."
The ACLU released a white paper last week outlining the problems with using location data from cell phones and how policymakers should proceed when they discuss the usage of surveillance to combat the outbreak.
"Location data contains an enormously invasive and personal set of information about each of us, with the potential to reveal such things as people's social, sexual, religious, and political associations," they wrote. "The potential for invasions of privacy, abuse, and stigmatization is enormous. Any uses of such data should be temporary, restricted to public health agencies and purposes, and should make the greatest possible use of available techniques that allow for privacy and anonymity to be protected, even as the data is used."
"The first thing you need to combat pervasive surveillance is to know that it's occurring."
Sara Collins, policy counsel at the digital rights organization Public Knowledge, says that one of the problems with the current administration is that there's not much transparency, so she worries surveillance could be increased without the public realizing it.
"You'll often see the White House come out with something—that they're going to take this action or an agency just says they're going to take this action—and there's no congressional authorization," Collins says. "There's no regulation. There's nothing there for the public discourse."
Collins says it's almost impossible to protect against infringements on people's privacy rights if you don't actually know what kind of surveillance is being done and at what scale.
"I think that's very concerning when there's no accountability and no way to understand what's actually happening," Collins says. "The first thing you need to combat pervasive surveillance is to know that it's occurring."
We should also be worried about corporate surveillance, Collins says, because the tech companies that keep track of our data work closely with the government and do not have a good track record when it comes to protecting people's privacy. She suspects these companies could use the coronavirus outbreak to defend the kind of data collection they've been engaging in for years.
Collins stresses that any increase in surveillance should be transparent and short-lived, and that there should be a limit on how long people's data can be kept. Otherwise, she says, we're risking an indefinite infringement on privacy rights. Her organization will be keeping tabs as the crisis progresses.
It's not that we shouldn't avail ourselves of modern technology to fight the pandemic. Indeed, once lockdown restrictions are gradually lifted, public health officials must increase their ability to isolate new cases and trace, test, and quarantine contacts.
But tracking the entire populace "Big Brother"-style is not the ideal way out of the crisis. Last week, for instance, a group of policy experts -- including former FDA Commissioner Scott Gottlieb -- published recommendations for how to achieve containment. They emphasized the need for widespread diagnostic and serologic testing as well as rapid case-based interventions, among other measures -- and they, too, were wary of pervasive measures to follow citizens.
The group wrote: "Improved capacity [for timely contact tracing] will be most effective if coordinated with health care providers, health systems, and health plans and supported by timely electronic data sharing. Cell phone-based apps recording proximity events between individuals are unlikely to have adequate discriminating ability or adoption to achieve public health utility, while introducing serious privacy, security, and logistical concerns."
The bottom line: Any broad increases in surveillance should be carefully considered before we go along with them out of fear. The Founders knew that privacy is integral to freedom; that's why they wrote the Fourth Amendment to protect it, and that right shouldn't be thrown away because we're in an emergency. Once you lose a right, you don't tend to get it back.
In November 2020, messenger RNA catapulted into the public consciousness when the first COVID-19 vaccines were authorized for emergency use. Around the same time, an equally groundbreaking yet relatively unheralded application of mRNA technology was taking place at a London hospital.
Over the past two decades, there's been increasing interest in harnessing mRNA — molecules present in all of our cells that act like digital tape recorders, copying instructions from DNA in the cell nucleus and carrying them to the protein-making structures — to create a whole new class of therapeutics.
Scientists realized that artificial mRNA, designed in the lab, could be used to instruct our cells to produce certain antibodies, turning our bodies into vaccine-making factories, or to recognize and attack tumors. More recently, researchers recognized that mRNA could also be used to make another groundbreaking technology far more accessible to more patients: gene editing. The gene-editing tool CRISPR has generated plenty of hype for its potential to cure inherited diseases. But delivering CRISPR to the body is complicated and costly.
"Most gene editing involves taking cells out of the patient, treating them and then giving them back, which is an extremely expensive process," explains Drew Weissman, professor of medicine at the University of Pennsylvania, who was involved in developing the mRNA technology behind the COVID-19 vaccines.
But last November, a Massachusetts-based biotech company called Intellia Therapeutics showed it was possible to use mRNA to make the CRISPR system inside the body, eliminating the need to extract cells out of the body and edit them in a lab. Just as mRNA can instruct our cells to produce antibodies against a viral infection, it can also teach them to produce the two molecular components that make up CRISPR — a guide molecule and a cutting protein — to snip out a problem gene.
"The pandemic has really shown that not only are mRNA approaches viable, they could in certain circumstances be vastly superior to more traditional technologies."
In Intellia's London-based clinical trial, the company applied this for the first time in a patient with a rare inherited liver disease known as hereditary transthyretin amyloidosis with polyneuropathy. The disease causes a toxic protein to build up in a person's organs and is typically fatal. In a company press release, Intellia's president and CEO John Leonard swiftly declared that its mRNA-based CRISPR therapy could usher in a "new era of potential genome editing cures."
Weissman predicts that turning CRISPR into an affordable therapy will become the next major frontier for mRNA over the coming decade. His lab is currently working on an mRNA-based CRISPR treatment for sickle cell disease. More than 300,000 babies are born with sickle cell every year, mainly in lower income nations.
"There is a FDA-approved cure, but it involves taking the bone marrow out of the person, and then giving it back which is prohibitively expensive," he says. It also requires a patient to have a matched bone marrow done. "We give an intravenous injection of mRNA lipid nanoparticles that target CRISPR to the bone marrow stem cells in the patient, which is easy, and much less expensive."
Meanwhile, the overwhelming success of the COVID-19 vaccines has focused attention on other ways of using mRNA to bolster the immune system against threats ranging from other infectious diseases to cancer.
The practicality of mRNA vaccines – relatively small quantities are required to induce an antibody response – coupled with their adaptable design, mean companies like Moderna are now targeting pathogens like Zika, chikungunya and cytomegalovirus, or CMV, which previously considered commercially unviable for vaccine developers. This is because outbreaks have been relatively sporadic, and these viruses mainly affect people in low-income nations who can't afford to pay premium prices for a vaccine. But mRNA technology means that jabs could be produced on a flexible basis, when required, at relatively low cost.
Other scientists suggest that mRNA could even provide a means of developing a universal influenza vaccine, a goal that's long been the Holy Grail for vaccinologists around the world.
"The mRNA technology allows you to pick out bits of the virus that you want to induce immunity to," says Michael Mulqueen, vice president of business development at eTheRNA, a Belgium-based biotech that's developing mRNA-based vaccines for malaria and HIV, as well as various forms of cancer. "This means you can get the immune system primed to the bits of the virus that don't vary so much between strains. So you could actually have a single vaccine that protects against a whole raft of different variants of the same virus, offering more universal coverage."
Before mRNA became synonymous with vaccines, its biggest potential was for cancer treatments. BioNTech, the German biotech company that collaborated with Pfizer to develop the first authorized COVID-19 vaccine, was initially founded to utilize mRNA for personalized cancer treatments, and the company remains interested in cancers ranging from melanoma to breast cancer.
One of the major hurdles in treating cancer has been the fact that tumors can look very different from one person to the next. It's why conventional approaches, such as chemotherapy or radiation, don't work for every patient. But weaponizing mRNA against cancer primes the immune cells with the tumor's specific genetic sequence, training the patient's body to attack their own unique type of cancer.
"It means you're able to think about personalizing cancer treatments down to specific subgroups of patients," says Mulqueen. "For example, eTheRNA are developing a renal cell carcinoma treatment which will be targeted at around 20% of these patients, who have specific tumor types. We're hoping to take that to human trials next year, but the challenge is trying to identify the right patients for the treatment at an early stage."
Repairing Damaged mRNA
While hopes are high that mRNA could usher in new cancer treatments and make CRISPR more accessible, a growing number of companies are also exploring an alternative to gene editing, known as RNA editing.
In genetic disorders, the mRNA in certain cells is impaired due to a rogue gene defect, and so the body ceases to produce a particular vital protein. Instead of permanently deleting the problem gene with CRISPR, the idea behind RNA editing is to inject small pieces of synthetic mRNA to repair the existing mRNA. Scientists think this approach will allow normal protein production to resume.
Over the past few years, this approach has gathered momentum, as some researchers have recognized that it holds certain key advantages over CRISPR. Companies from Belgium to Japan are now looking at RNA editing to treat all kinds of disorders, from Huntingdon's disease, to amyotrophic lateral sclerosis, or ALS, and certain types of cancer.
"With RNA editing, you don't need to make any changes to the DNA," explains Daniel de Boer, CEO of Dutch biotech ProQR, which is looking to treat rare genetic disorders that cause blindness. "Changes to the DNA are permanent, so if something goes wrong, that may not be desirable. With RNA editing, it's a temporary change, so we dose patients with our drugs once or twice a year."
Last month, ProQR reported a landmark case study, in which a patient with a rare form of blindness called Leber congenital amaurosis, which affects the retina at the back of the eye, recovered vision after three months of treatment.
"We have seen that this RNA therapy restores vision in people that were completely blind for a year or so," says de Boer. "They were able to see again, to read again. We think there are a large number of other genetic diseases we could go after with this technology. There are thousands of different mutations that can lead to blindness, and we think this technology can target approximately 25% of them."
Ultimately, there's likely to be a role for both RNA editing and CRISPR, depending on the disease. "I think CRISPR is ideally suited for illnesses where you would like to permanently correct a genetic defect," says Joshua Rosenthal of the Marine Biology Laboratory in Chicago. "Whereas RNA editing could be used to treat things like pain, where you might want to reset a neural circuit temporarily over a shorter period of time."
Much of this research has been accelerated by the COVID-19 pandemic, which has played a major role in bringing mRNA to the forefront of people's minds as a therapeutic.
"The pandemic has really shown that not only are mRNA approaches viable, they could in certain circumstances be vastly superior to more traditional technologies," says Mulqueen. "In the future, I would not be surprised if many of the top pharma products are mRNA derived."
"Making Sense of Science" is a monthly podcast that features interviews with leading medical and scientific experts about the latest developments and the big ethical and societal questions they raise. This episode is hosted by science and biotech journalist Emily Mullin, summer editor of the award-winning science outlet Leaps.org.