Somebody Has to Be Willing To Participate
What we can learn about humanity from COVID-19 vaccine trial volunteers
By Charlotte Stevenson and Lori Sonken
“Somebody has to be willing to participate,” said Lynn when asked why she volunteered for the Pfizer COVID-19 vaccine trial through Wake Research. A full-time graduate student in her 50’s living outside of Durham, North Carolina, she considers herself healthy and wants to be part of the solution.
Somebody has to be willing to participate.
When faced with a decision that comes down to this fact, that someone has to go first, or someone has to be the guinea pig, most of us choose to wait. It must be programmed into our genetics, our primitive survival instinct, not to be the first to volunteer for a risky new activity. Being the first caveman or woman to taste a newly discovered plant or to cross an unknown river certainly had its risks.
So who are these people, this extremely small percentage of the human population, who, when they hear the words, someone has to go first, decide to join a vaccine trial despite the risk? Who are these individuals who take a step forward when the rest of us leap backward?
Vaccines typically take years to develop, yet the race to create a COVID-19 vaccine has sped up the process significantly. The U.K, Canada and now the U.S. have approved emergency use of both the Moderna and Pfizer/BioNTech vaccines. To make this speed possible, hundreds of thousands of Americans volunteered this summer and fall for clinical trials to test vaccine safety and efficacy.
Who are these volunteers?
They are insane. Who would ever do that?
This is a comment we heard often as we searched for trial volunteers to interview. We heard other emphatic generalizations as well:
No one over 70 would ever consider doing a trial.
People just volunteer because they want the money.
We tracked down 27 trial volunteers from around the country as well as the UK enrolled in six different trials (Moderna, Johnson & Johnson, Pfizer, Oxford/AstraZeneca, Janssen through Tulane University, Stanford University, and a Pfizer trial through Yale University). Of the 16 women and 11 men we interviewed ranging in age from 17 to 79, six volunteers are in their 60s and four are in their 70s. Some are comfortable disclosing their identity but others, like Lynn, are not.
The majority are Caucasian, but some self-identify as Asian, Latinx, North African, Middle Eastern, and biracial. They range evenly in annual household income from less than $50,000 to over $200,000, with most earning between $50-$100,000. Volunteers are compensated for their time and inconvenience, albeit at different rates, ranging from a few hundred dollars to $1,600. Only two individuals said the payment played a role in their willingness to volunteer in a trial.
Vaccines made for everyone
Many volunteers share an interest in making sure their age, race, and gender are considered in vaccine development. Kris Ikejiri, a retired attorney in Grapevine Texas is 64, Asian, and a volunteer for the Pfizer trial.
“The news kept reporting that the makers needed more minorities and older people to participate in the trials to get a vaccine that would be efficacious for more of the population,” said Kris.
“I thought it was important to have women and older individuals represented as trial subjects,” said Tracey Funari, 60, a former high school math teacher participating in the Pfizer trial at Yale School of Medicine in New Haven. Tracey also mentioned she was happy to learn that Dr. Onyema Ogbuag, the leader of her trial and Director of the HIV Clinical Trials program of the Yale AIDS Program, had ensured that 40 percent of the Yale COVID-19 trial participants are people of color. Another Pfizer COVID-19 trial volunteer in her 30s from Cleveland, Ohio said, “I didn’t want to say no to the opportunity, which would assume some other body (probably a brown or black body) would volunteer on my behalf.”
Medicine and pharmaceutical product development have a long, unfortunate record of under-including minority groups like women and people of color in the development of vaccines and study of their safety, dosage, side-effects, and efficacy. There is also a sad history of abusing minorities in medical research. Perhaps the most famous example, understandably generating distrust of medical research in the African American population, is the Tuskegee Study on syphilis treatment that lasted from 1932–1972. In an extreme violation of the “informed consent” required today for all medical trial participants, hundreds of Black, male volunteers were not fully informed that they were being treated for syphilis, never given the opportunity to withdraw from the study, and not offered penicillin treatment when it became available in 1947.
A new science
Beyond ensuring equitable representation in the vaccine research, 18 of the 27 volunteers we interviewed said that making a contribution to science is a prime motivation for participating in a trial. Joining a clinical trial “can be a way of doing something good for science and society,” said Tulane professor Walter Isaacson. Isaacson joined the Pfizer clinical trial in New Orleans as a way to learn more about the RNA molecule he examines in his upcoming book on genetic engineering.
Both the Pfizer/BioNTech and the Moderna vaccines use novel biotechnology, genetic code known as messenger RNA (mRNA), instead of a virus (live or dead). The messenger RNA tells our cells to create the “spike protein” of the coronavirus which in turn triggers our immune systems to create antibodies to protect against the coronavirus. In other words, the vaccine teaches the immune system to recognize the virus that causes COVID-19 without actually exposing us (or our DNA) to the virus.
In Isaacson’s opinion, participating in a vaccine trial is no more risky than driving a car on busy Claiborne Ave. in New Orleans. More than 38,000 people die annually in car accidents, and another 4.4 million are injured seriously enough to need medical attention, according to the National Safety Council. And yet, despite these high probabilities of dying or being injured, most Americans drive cars. Daily.
“Putting your body on the line to advance science is scary but it feels like you can pat yourself on the back because you’re contributing to science, especially with the mRNA. It’s new and never been used,” said Jonathan Gonzalez-Smith, 32, Baltimore-based health researcher.
An easy-to-forget history
Those seeking to contribute to science may remember people died from infectious diseases that now have cures or vaccines. There are great resources for a deeper look at disease and vaccination history in the U.S. (like immunize.org, historyofvaccines.org, and the CDC), but just a few significant dates and numbers begins to give a picture of how much disease and death was occurred, even just a few generations ago, without the vaccines we are accustomed to today:
- Measles: Around World War I, about 6,000 people, mostly children under the age of five, died annually from measles, according to the Centers for Disease Control. A vaccine for measles was not available until 1963. Even just before the vaccine, 400–500 people died and 48,000 were hospitalized every year, including 1,000 with encephalitis (brain-swelling). Even today, 1–3 children out of 1,000 who get measles will die, despite modern care.
- Diphtheria: In 1923, the first diphtheria vaccine was licensed. Just two years prior, the U.S. reported 15,520 deaths, mostly children. Incredibly deadly, diphtheria kills 1 out of 5 children infected. Due to vaccination, it is rare to find a case of diphtheria in the U.S today.
- Yellow Fever: In 1935, the first yellow fever vaccine was licensed in the U.S. Before then, outbreaks were devastating in communities. An outbreak of yellow fever in Philadelphia in 1793 killed about 10 percent of the city’s population. There still is no cure for yellow fever, and the disease kills 30,000 people globally each year.
- Polio: Prior to the polio vaccine in 1955, polio disabled (paralyzed) about 35,000 people a year; yet the U.S. is polio-free since 1979 because of vaccination.
- Rubella: In 1964, a viral rubella epidemic swept the U.S. resulting in 12.5 million cases, thousands of fetal and neonatal deaths, and approximately 20,000 newborns with congenital rubella syndrome (which includes deafness, eye defects, cardiac defects, mental retardation, bone lesions, and other abnormalities). The first rubella vaccine was licensed in the U.S. in 1969.
- Smallpox: In 1977, doctors found what became the last case of naturally-acquired smallpox in Somalia, and the world was declared smallpox-free by 1980. Smallpox had a 30 percent death rate and it is estimated that over 300 million people died of it in the 20th century alone. Smallpox is still the only human disease to have been completely eradicated from the planet by vaccination.
- Pneumococcal disease: In 2000, a pneumococcal vaccine was licensed for children in the U.S. Since then, pneumococcal disease in children has dropped by nearly 80 percent in the United States. There are still about 2,000 serious cases of invasive pneumococcal disease a year in children under five; about 120 die from the infection, and many are left with permanent injuries like deafness, brain damage, or loss of arms or legs.
- And don’t forget tetanus, hepatitis A, hepatitis B, whooping cough, mumps, and rabies.
I will do it
The 27 volunteers we interviewed joined a COVID-19 vaccine trial to contribute to scientific progress or to right the historical wrongs of excluding women, people of color, or older people from medical research. However, their number one reason — a remarkably simple one — was just wanting to do something helpful for humanity, regardless of any personal risk to themselves. All but five identified an urge to help others as the most important reason.
“I joined the study because I had otherwise felt feckless in the face of this worldwide scourge,” said Cynthia Levinson, 75, who joined the Pfizer/BioNTech trial in Austin, Texas.
“I want to protect people I care about who are in higher-risk categories than I am,” said Nancy Holzner, an instructor at Ithaca College in Ithaca, New York.
“I thought it would be hard for them to find people willing,” said a multi-racial, female in her 30s in the Pfizer trial in Los Angeles.
Somebody has to be willing to participate.
Such a simple reason and yet, so bold. Almost all of the people we interviewed acknowledged some personal risk to themselves; only four volunteers believed there is no risk in being part of a vaccine trial. Most told us they did their research, weighed the risk of negative side effects or actually contracting COVID-19, and opted to do what they felt is best for humanity.
While it seems that the worst displays of humanity — selfishness, greed, ignorance, bigotry — get mainstream or social media attention, understanding the reasons these volunteers agreed to participate in recent COVID-19 vaccine trials illustrates some of the best displays of humanity — generosity, bravery, and selflessness — that too often are silent and hidden.
No need to debate whether altruism exists. These volunteers accepted personal discomfort and risk and focused squarely on the benefit of their actions for more vulnerable loved ones, older people, minorities, and humanity as a whole. Their participation speaks volumes for the quality of their collective character. We owe respect and likely a big ‘thank you’ to these rare individuals who step forward when the rest of us step back.
About the Authors
Lori Sonken is a freelance writer. Her stories have appeared in the Cornell Chronicle, National Parks Traveler, and the Ithaca Times, among other publications.
Charlotte Stevenson, M.S. is a freelance science writer and editor. Currently contracts include NOAA Sea Grant at the University of Southern California, Stanford School of Medicine, and the Center for Marine Biodiversity and Conservation at Scripps Institute of Oceanography. She has also published recently with Medium’s Age of Awareness.
