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Protect Your Privacy

Disinformation campaigns are prevalent during crises. Here’s how you can protect yourself.

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With the COVID-19 Pandemic, Black Lives Matter protests nationwide, and the countdown to the 2020 Presidential election, there has been a flurry of online activity.

We're tweeting about these events, we're sharing news articles about them on Facebook, and we're uploading live videos as events happen during protests. These platforms are being used to communicate, to express outrage, to share what we're witnessing on the streets, to debate ideas, and to campaign for candidates.

This isn't new, of course. Social media has long been a way to get information out quickly.

"When the plane landed on the Hudson, that was one of the first events that was social media first," says Kate Starbird, associate professor in the Department of Human Centered Design and Engineering at the University of Washington. "The news went out via social media first because it was faster. People could actually see what was going on long before people could write a story about it or put it on the news."

Social media has also been lauded as a way for people to get information from a variety of perspectives — everybody can share what they see.

But, she adds, "the problem is that there is some inherent risk and vulnerabilities in getting things at that speed because speed can drive misinformation and mistakes." It's also incredibly difficult to know if all of these voices on social media are real. Some of those accounts might be deliberately trying to spread disinformation.

Disinformation spreads quickly during and after natural disasters, mass shootings, and other dangerous events.

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In fact, for more than a decade, Starbird has been researching how misinformation and disinformation spread online during these kinds of crises.

During a crisis, there's a lot of uncertainty and fear, so we start theorizing — or rumoring — on what to do and that rumoring can create misinformation. Then, political actors can either create additional misinformation or amplify existing rumors to spread false information for political reasons. "When there's fear and anxiety, we're acutely vulnerable to politicization, misinformation, and disinformation," she says.

For example, climate science denialists can use natural disasters — such as hurricanes or winter storms — to amplify false information that supports their cause.

Not all this disinformation comes from foreign actors.

"We tend to think about it as foreign and Russian," Starbird says, "but that's going to be a small part of what is going on right now. I think we need to be more aware that the tools and techniques of disinformation are democratized… the same kind of techniques are being used by domestic actors, activists, political operatives and foreign campaigns."

Joan Donovan, Research Director of the Shorenstein Center on Media, Politics and Public Policy, agrees. During Donald Trump's campaign for president, she saw many white supremacists using these techniques to organize. But she also saw advertisers using similar techniques — such as fake communities, fake engagement, and fake reviews.

Your personal data can be used in disinformation campaigns too.

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Everything you do online generates personal data. Cookies and other web trackers embedded in the sites you visit collect this data when you create social media profiles, buy things online, or simply browse the internet. Many of these cookies then use your data to personalize the ads you see.

"An advertiser can select ads to show you based on the profile they have built from your data," explains Marshall Erwin, Senior Director of Trust and Security at Mozilla, but "these same sophisticated profiles and ad targeting tools allow politicians to slice and dice the electorate. Politicians might have a divisive message that they can target to certain demographics, such as one designed to radicalize white, middle aged men."

This profile can also be used to target you and get you to believe and share disinformation.

If this happened "you'd be getting skewed information targeted towards you based on the customization of the information environment" says Donovan.

This can be especially powerful if you're in a social media echo chamber, where many of your friends and loved one have similar beliefs so you won't see anything contradicting. "If individuals are caught in a media echo chamber and they're not seeking out a diverse set of sources, then they're going to be prone to sharing disinformation, just by the virtue that they're not lumping in the other information that is contradicting what it is that they are seeing," says Donovan. And this helps that disinformation spread to your friends and family.

The algorithms on social networks, like Facebook, also use your data and click history to determine which friends you see updates from and which particular news stories shared by those friends you see. This means you're more likely to see friends that think like you and news stories that align with your worldview, thereby creating an echo chamber.

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Furthermore, your personal data online could also be used to create fake accounts that seem more legitimate. For example, Donovan says a friend of hers had his wedding photos stolen from Flickr and used as part of a meme campaign against Hillary Clinton.

So how can you protect yourself?

1. Slow down.

"As information participants, we're not just information consumers anymore. We're participants and when we're online, we need to slow ourselves down," says Starbird. Before you retweet, go to the account and look at previous tweets. "Make sure you really want to endorse something that the account is saying."

2. If something you read online seems outrageous, double check that story with other trusted news sources.

"Stories meant to stoke rage and anger coupled with novelty — that is, you're not seeing them elsewhere — are the recipes driving people to share false stories," explains Donovan. "So you read a headline that's "Famous actor says some racial slur," don't share it out of rage if no one else is saying it's true."

3. Know it's hard sometimes to recognize fake accounts — they look real.

"As a researcher who studies this, sometimes we can spend hours — I mean 40 hours or even 100 hours — looking at specific accounts to figure out if this is a real person or if it is an impersonator or a troll from another country."

It's hard because the bad actors that create these accounts spend years "seasoning" them to fool you.

For example, Starbird knows of some accounts by Russian actors that started out simply tweeting real information during natural disasters in order to build their audience. Then, once they had the audience, they started sprinkling in fake information or calling real events fake.

Donovan knows of another account that started as a celebrity gossip profile before changing to political disinformation closer to the 2016 election.

4. When in doubt, dig a little deeper.

If you're still not sure, Donovan says you can use the Wayback machine to see if the account has changed personas in the past.

You can also download the avatar or the banner image on the social media accounts and do a reverse image search to see if the picture shows up elsewhere or if it's real.

If you still can't tell if an account is real, don't follow them.

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5. If you make a mistake, correct it.

"If we do spread something wrong, don't just delete it," says Starbird. "Actually go back and let everyone know who might have reshared your post that it was actually wrong. If it's Facebook, actually edit the post and say this is wrong. Let people know that we've made a mistake."

"Journalists have these standards of fact-checking," she continues. "Well, we're all talking about being citizen journalists now, so now we have to take on some of that responsibility if we want to have the privilege."

6. Use the 'flag' tool.

If you think you've found a fake account or you're seeing dangerous, false information online, flag it.

This is safer than trying to dispel information on your own. "If it's a serious disinformation campaign, groups of people who want to remain online will attack you in order to try to shut you down personally," says Donovan.

7. Protect your personal data while you browse online.

If a disinformer is using advertising technology to target you, using a browser that has privacy controls to limit the amount of information collected about you might help. Mozilla, for example, protects users' data by turning on privacy features by default in the Firefox browser and using the Enhanced Tracking Protection feature to prevent known parties from tracking your activity from the sites you visit, therefore limiting their ability to build a profile of you.

You can also use private browsing or incognito mode to clear cookies and your cache.

8. Remember that we all have an important role to play in stopping the spread of disinformation.

"We sometimes have this idea, just like with voting, that we're too small," says Starbird. "'Nothing I do is going to make a big impact, and yet at scale, absolutely it does. Misinformation doesn't spread itself. We spread it, as information participants."

"There is a well-founded fear that pervasive disinformation is undermining our trust in information systems, our trust in our democratic election systems and our trust in each other," she continues. "That can undermine democratic society because if we can't come together with some kind of shared reality and an acceptance of others in our country as legitimate political actors, then we can't come together to govern ourselves. In those conditions, democracy falls apart."

From Your Site Articles

We asked three people how cancer changed their lives. Here are their stories – and how cancer is changing because of them.

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Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."