Science Fact vs. Science Fiction: Can You Tell the Difference?
A portrait of skepticism while reading information online.
Today's growing distrust of science is not an academic problem. It can be a matter of life and death.
Take, for example, the tragic incident in 2016 when at least 10 U.S. children died and over 400 were sickened after they tried homeopathic teething medicine laced with a poisonous herb called "deadly nightshade." Carried by CVS, Walgreens, and other major American pharmacies, the pills contained this poison based on the alternative medicine principle of homeopathy, the treatment of medical conditions by tiny doses of natural substances that produce symptoms of disease.
Such "alternative medicines" take advantage of the lack of government regulation and people's increasing hostility toward science.
These children did not have to die. Numerous research studies show that homeopathy does not work. Despite this research, homeopathy is a quickly-growing multi-billion dollar business.
Such "alternative medicines" take advantage of the lack of government regulation and people's increasing hostility toward science. Polling shows that the number of people who believe that science has "made life more difficult" increased by 50 percent from 2009 to 2015. According to a 2017 survey, only 35 percent of respondents have "a lot" of trust in scientists; the number of people who do "not at all" trust scientists increased by over 50 percent from a similar poll conducted in December 2013.
Children dying from deadly nightshade is only one consequence of this crisis of trust. For another example, consider the false claim that vaccines cause autism. This belief has spread widely across the US, and led to a host of problems. For instance, measles was practically eliminated in the US by 2000. However, in recent years outbreaks of measles have been on the rise, driven by parents failing to vaccinate their children in a number of communities.
The Internet Is for… Misinformation
The rise of the Internet, and more recently social media, is key to explaining the declining public confidence in science.
Before the Internet, the information accessible to the general public about any given topic usually came from experts. For instance, researchers on autism were invited to talk on mainstream media, they wrote encyclopedia articles, and they authored books distributed by large publishers.
The Internet has enabled anyone to be a publisher of content, connecting people around the world with any and all sources of information. On the one hand, this freedom is empowering and liberating, with Wikipedia a great example of a highly-curated and accurate source on the vast majority of subjects. On the other, anyone can publish a blog piece making false claims about links between vaccines and autism or the effectiveness of homeopathic medicine. If they are skilled at search engine optimization, or have money to invest in advertising, they can get their message spread widely. Russia has done so extensively to influence elections outside of its borders, whether in the E.U. or the U.S.
Unfortunately, research shows that people lack the skills for differentiating misinformation from true information. This lack of skills has clear real-world effects: U.S. adults believed 75 percent of fake news stories about the 2016 US Presidential election. The more often someone sees a piece of misinformation, the more likely they are to believe it.
To make matters worse, we all suffer from a series of thinking errors such as the confirmation bias, our tendency to look for and interpret information in ways that conform to our intuitions.
Blogs with falsehoods are bad enough, but the rise of social media has made the situation even worse. Most people re-share news stories without reading the actual article, judging the quality of the story by the headline and image alone. No wonder research has indicated that misinformation spreads as much as 10 times faster and further on social media than true information. After all, creators of fake news are free to devise the most appealing headline and image, while credible sources of information have to stick to factual headlines and images.
To make matters worse, we all suffer from a series of thinking errors such as the confirmation bias, our tendency to look for and interpret information in ways that conform to our intuitions and preferences, as opposed to the facts. Our inherent thinking errors combined with the Internet's turbine power has exploded the prevalence of misinformation.
So it's no wonder we see troubling gaps between what scientists and the public believe about issues like climate change, evolution, genetically modified organisms, and vaccination.
What Can We Do?
Fortunately, there are proactive steps we can take to address the crisis of trust in science and academia. The Pro-Truth Pledge, founded by a group of behavioral science experts (including myself) and concerned citizens, calls on public figures, organizations, and private citizens to commit to 12 behaviors listed on the pledge website that research in behavioral science shows correlate with truthfulness.
Signers are held accountable through a crowdsourced reporting and evaluation mechanism while getting reputational rewards because of their commitment. The scientific consensus serves as a key measure of credibility, and the pledge encourages pledge-takers to recognize the opinions of experts - especially scientists - as more likely to be true when the facts are disputed.
The pledge "really does seem to change one's habits," encouraging signers to have attitudes "of honesty and moral sincerity."
Launched in December 2016, the pledge has surprising traction. Over 6200 private citizens took the pledge. So did more than 500 politicians, including members of US state legislatures Eric Nelson (PA), James White (TX), and Ogden Driskell (WY), and national politicians such as members of U.S. Congress Beto O'Rourke (TX), Matt Cartwright (PA), and Marcia Fudge (OH). Over 700 other public figures, such as globally-known public intellectuals Peter Singer, Steven Pinker, Michael Shermer, and Jonathan Haidt, took the pledge, as well as 70 organizations such as Media Bias/Fact Check, Fugitive Watch, Earth Organization for Sustainability, and One America Movement.
The pledge is effective in changing behaviors. A candidate for Congress, Michael Smith, took the Pro-Truth Pledge. He later posted on his Facebook wall a screenshot of a tweet by Donald Trump criticizing minority and disabled children. However, after being called out that the tweet was a fake, he went and searched Trump's feed. He could not find the original tweet, and while Trump may have deleted it, the candidate edited his own Facebook post to say, "Due to a Truth Pledge I have taken, I have to say I have not been able to verify this post." He indicated that he would be more careful with future postings.
U.S. Army veteran and pledge-taker John Kirbow described how the pledge "really does seem to change one's habits," helping push him both to correct his own mistakes with an "attitude of humility and skepticism, and of honesty and moral sincerity," and also to encourage "friends and peers to do so as well."
His experience is confirmed by research on the pledge. Two research studies at Ohio State University demonstrated the effectiveness of the pledge in changing the behavior of pledge-takers to be more truthful with a strong statistical significance.
Taking the pledge yourself, and encouraging people you know and your elected representatives to do the same, is an easy and effective way to fight misinformation and to promote a culture that values the truth.
Patients voice hope and relief as FDA gives third-ever drug approval for ALS
On Sept. 29, the FDA approved Relyvrio, a new drug for ALS, even though a study of 137 ALS patients did not result in “substantial evidence” that Relyvrio was effective.
At age 52, Glen Rouse suffered from arm weakness and a lot of muscle twitches. “I first thought something was wrong when I could not throw a 50-pound bag of dog food over the tailgate of my truck—something I use to do effortlessly,” said the 54-year-old resident of Anderson, California, about three hours north of San Francisco.
In August, Rouse retired as a forester for a private timber company, a job he had held for 31 years. The impetus: amyotrophic lateral sclerosis, or ALS, a progressive neuromuscular disease that is commonly known as Lou Gehrig’s disease, named after the New York Yankees’ first baseman who succumbed to it less than a month shy of his 38th birthday in 1941. ALS eventually robs an individual of the ability to talk, walk, chew, swallow and breathe.
Rouse is now dependent on ventilation through a nasal mask and uses a powerchair to get around. “I can no longer walk or use my arms very well,” he said. “I can still move my wrists and fingers. I can also transfer from my chair to the toilet if I have two of my friends help me.”
It’s “shocking” that modern medicine has very little to offer to people with this devastating condition, Rouse said. But there is hope on the horizon. Yesterday, the U.S. Food and Drug Administration approved Relyvrio, a drug made up of two parts, sodium phenylbutyrate and taurursodiol, to treat patients with ALS.
“This approval provides another important treatment option for ALS, a life-threatening disease that currently has no cure,” said Billy Dunn, director of the Office of Neuroscience in the FDA’s Center for Drug Evaluation and Research, in a statement. “The FDA remains committed to facilitating the development of additional ALS treatments.”
Until this point, the FDA had approved only two other medications—Riluzole (rilutek) in 1995 and Radicava (edaravone) in 2017—to extend life in patients with ALS, which typically kills within two to five years after diagnosis. That’s why earlier this week, Rouse was optimistic about the FDA’s likely approval of a controversial new drug for ALS.
When Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months, said Richard Bedlak, director of the Duke ALS Clinic. “It is not a cure, but it is definitely a step forward.”
“The whole ALS community is extremely excited about it,” he said the day before Relyvrio’s expected approval. “We are very hopeful. We’re on pins and needles.”
A study of 137 ALS patients did not result in “substantial evidence” that Relyvrio was effective, the agency’s Peripheral and Central Nervous System Drugs Advisory Committee concluded in March. However, after some persuasion from FDA officials, patients and their families, the committee met again and decided to recommend approving the drug.
In January 2019, following an ALS diagnosis at age 58 in October the previous year, Jeff Sarnacki, of Chester, Maryland, was accepted into a trial for Relyvrio. “Because of the trial, we did experience hope and a greater sense of help than had we not had that opportunity,” said Juliet Taylor, his wife and caregiver. They both believed the drug “worked for him in giving him more time.”
In June 2019, Sarnacki chose an open-label extension, offered to patients by drug researchers after a study ends, and took the active drug until he died peacefully at home under hospice care in May 2020, five days after his 60th birthday. A retired agent with the federal Bureau of Alcohol, Tobacco, Firearms and Explosives who later worked as a security consultant, Sarnacki lived about 19 months after diagnosis, which is shorter than the typical prognosis.
His symptoms began with leg cramps in fall 2017 and foot drop in early 2018. A feeding tube was placed in 2019, as it became necessary early in his illness, Taylor said. He also took Radicava and Riluzole, the two previously approved drugs, for his ALS. “We were both incredulous that, so many years after Lou Gehrig’s own diagnosis, there were so few treatments available,” she said.
The dearth of successful treatments for ALS is “certainly not for lack of trying,” said Karen Raley Steffens, a registered nurse and ALS support services coordinator at the Les Turner ALS Foundation in Skokie, Ill. “There are thousands of researchers and scientists all over the world working tirelessly to try to develop treatments for ALS.”
Unfortunately, she added, research takes time and exorbitant amounts of funding, while bureaucratic challenges persist. The rare disease also manifests and progresses in many different ways, so many treatments are needed.
As of 2017, the Centers for Disease Control and Prevention estimated that more than 31,000 people in the U.S. live with ALS, and an average of 5,000 people are newly diagnosed every year. It is slightly more common in men than women. Most people are diagnosed between the ages of 55 and 75.
Most cases of ALS are sporadic, meaning that doctors don’t know the cause. There is about a one-year interval between symptom onset and an ALS diagnosis for most patients, so many motor neurons are lost by the time individuals can enroll in a clinical trial, said Richard Bedlack, professor of neurology and director of the Duke ALS Clinic in Durham, North Carolina.
Bedlack found the new drug, Relyvrio, to be “very promising,” which is why he testified to the FDA in favor of approval. (He’s a consultant and disease state speaker for multiple companies including Amylyx, manufacturer of Relyvrio.)
The “drug has different mechanisms of action than the currently approved treatments,” Bedlack said. He added that, when Relyvrio is taken in addition to Riluzole, it appears to slow functional decline by an additional 25 percent and extend life by another 6 to 10 months. “It is not a cure, but it is definitely a step forward.”
T. Scott Diesing, a neurohospitalist and director of general neurology at the University of Nebraska Medical Center in Omaha, said he hopes the drug is “as good as people anticipated it should be, because there are not too many options for these patients.”
"FDA went out on a limb in approving Relyvrio based on limited results from a small trial while a larger study remains in progress," said Florian P. Thomas, co-director of the ALS Center at Hackensack University Medical Center and the Meridian School of Medicine. "While it is definitely promising, clearly, the last word on this drug has not been spoken."
So far, Rouse's voice is holding up, but he knows the day will come when ALS will steal that and much more from him.
ALS is 100 percent fatal, with some patients dying as soon as a year after diagnosis. A few have lasted as long as 15 years, but those are the exceptions, Diesing said.
“If this drug can provide even months of additional life, or would maintain quality of life, that’s a big deal,” he noted, adding that “the patients are saying, ‘I know it’s not proven conclusively, but what do we have to lose?’ So, they would like to try it while additional studies are ongoing.” The drug has already been conditionally approved in Canada.
As his disease progresses, Rouse hopes to get a speech-to-text voice-generating computer that he can control with his eyes. So far, his voice is holding up, but he knows the day will come when ALS will steal that and much more from him. He works at I AM ALS, a patient-led community, and six of his friends have already died of the disease.
“Every time I lose a friend to ALS, I grieve and am sad but I resolve myself to keep working harder for them, myself and others,” Rouse said. “People living with ALS find great purpose in life advocating and trying to make a difference.”
Friday Five Podcast: New drug may slow the rate of Alzheimer's disease
On September 27, pharmaceuticals Biogen and Eisai announced that their drug, lecanemab, can slow the rate of Alzheimer's disease, according to a clinical trial. Today's Friday Five episode covers this story and other health research over the month of September.
The Friday Five covers important stories in health and science research that you may have missed - usually over the previous week, but today's episode is a lookback on important studies over the month of September.
Most recently, on September 27, pharmaceuticals Biogen and Eisai announced that a clinical trial showed their drug, lecanemab, can slow the rate of Alzheimer's disease. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend and the new month.
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This Friday Five episode covers the following studies published and announced over the past month:
- A new drug is shown to slow the rate of Alzheimer's disease
- The need for speed if you want to reduce your risk of dementia
- How to refreeze the north and south poles
- Ancient wisdom about Neti pots could pay off for Covid
- Two women, one man and a baby
Matt Fuchs is the editor-in-chief of Leaps.org. He is also a contributing reporter to the Washington Post and has written for the New York Times, Time Magazine, WIRED and the Washington Post Magazine, among other outlets. Follow him on Twitter @fuchswriter.