We have completed maintenance on DiscoverMagazine.com and action may be required on your account. Learn More

Experts Examine Use of Effective Altruism in Medicine

Can a controversial philanthropic philosophy navigate the thorny ethics of human experimentation?

By Sara HarrisonAug 4, 2023 9:15 AM
DSC-EA0923 - 01
(Credit: Tilialucida/Shutterstock)


Sign up for our email newsletter for the latest science news

This story was originally published in our Sept/Oct 2023 issue as "Effective Altruism Goes Viral" Click here to subscribe to read more stories like this one.

Paresh Patel used to be afraid of needles. Then he volunteered to catch COVID-19. When an email arrived with news that scientists at the University of Oxford in the U.K. were looking for volunteers willing to be infected with the SARS-CoV-2 virus, Patel signed up. He had already caught and survived COVID in October 2020. Other than losing his senses of smell and taste for a few days, the experience was unremarkable.

And at 27 years old, he was young, fit, and had no preexisting conditions, so he wasn’t worried about possible risks like blood clots, breathing difficulties, or even death.

“The only thing, weirdly, that I was worried about was the needles,” he says. Patel hoped that he could help scientists study the virus — and do a little amateur exposure therapy to cure his needle-phobia along the way.

When Patel signed up for the Oxford trial, he became one of nearly 40,000 people around the world who volunteered for infection through 1Day Sooner, a nonprofit that advocates for the wider adoption of human challenge trials. In these trials, participants are willingly exposed to a disease so scientists can study their immune response and test vaccines and treatments. Such cases have been integral in developing cures for malaria and yellow fever, and 1Day Sooner believed they would speed the arrival of a COVID-19 vaccine, potentially saving millions of lives.

While scientists and ethicists disagreed about whether the trials would be useful — let alone ethical — to conduct, 1Day Sooner’s founders forged ahead, organizing a congressional briefing, penning op-eds and enrolling volunteers. The system that regulates clinical trials is overly paternalistic, says Josh Morrison, president and co-founder of 1Day Sooner, which is based in the U.S. and has chapters in the U.K. and Africa. “People should have the right to make decisions that affect their lives,” he says, and informed people should be allowed to choose which risks they’re willing to take.

But things didn’t go according to plan. “In the case of the U.K. SARS-CoV-2 trial, 1Day Sooner turned out to be three days later,” says Daniel Sulmasy, director of the Kennedy Institute of Ethics at Georgetown University. “The mRNA vaccines were all out before the experiment was even done.”

1Day Sooner may have missed the chance to help accelerate the arrival of COVID vaccines, but the organization itself is still cruising along, part of a larger movement inspired by the tenets of a popular philosophy known as effective altruism (EA). EA is based on the premise that people should use their time, money and energy in ways that will do the most good for the most people. Over the last two decades, it’s grown from a niche, academic concept into a flourishing ecosystem of donors, foundations and nonprofits.

But the debate over 1Day Sooner’s approach and the organization’s struggle to create real, large-scale change exemplify some of the challenges of enacting EA’s seemingly simple principles in the real world. Calculating the most “effective” actions is a complicated endeavor. Add in the gruesome history of human medical trials, the disagreements between experts, and the immediacy of a global pandemic, and you’re left with an ethical conundrum that exposes both the movement’s promise and its potential perils.

The Against Malaria Foundation, which provides anti-malaria mosquito nets to at-risk populations, is EA’s single most common donation target. (Credit: Mile 91/Ben Langdon/Alamy Stock Photo)

Moral Obligation

Effective altruism’s philosophical roots lie in the concept of utilitarianism. In the late 18th and early 19th centuries, theorists like John Stuart Mill and Jeremy Bentham proposed that it was in society’s best interest for individuals to promote happiness and to decrease misery as much as possible. Actions, therefore, could be judged by how much happiness they yielded relative to the amount of suffering they caused. Crudely put: In utilitarianism, the ends justify the means.

Peter Singer, a philosopher and professor of bioethics at Princeton University, took these ideas a step further in 1972. In an article entitled “Famine, Affluence, and Morality,” Singer compares the Western world’s inaction during a severe famine in what was then East Bengal to standing idly by while a child drowns. Giving money to help people in dire need isn’t charity, he argued; it’s a moral obligation.

Decades later, Singer’s work inspired former hedge-fund analysts Holden Karnofsky and Elie Hassenfeld. In 2007, the two started GiveWell, an organization that evaluates the effectiveness of different charities. Singer also inspired philosophy grad students Toby Ord and William MacAskill, who in 2009 pledged to give away a significant portion of their incomes to charity organizations. Two years later, they launched an online community to identify global problems, to find and implement solutions, and to study the impact of those solutions on the real world. These organizations coalesced under the umbrella term “effective altruism.”

In a nutshell, EA blends Singer’s call to action with the utilitarian idea that the good effects of an action can be quantified and compared. The movement remained a relatively small community until Dustin Moskovitz, one of the founders of Facebook and Asana, and his wife Cari Tuna, decided to give away the majority of their fortune within their lifetimes. The couple partnered with GiveWell in 2011, using the organization’s analyses to make the biggest impact possible with their money. Since then, Tuna and Moskovitz have become key figures, donating millions to EA think tanks and causes, while tweeting regularly about its principles. The philosophy has gone on to become popular among tech billionaires like Skype founding engineer Jaan Tallinn and even Elon Musk.

For 1Day Sooner co-founder Josh Morrison, the EA community and philosophy incentivize him to be the best person he can be. In 2011, Morrison was a successful but unfulfilled corporate lawyer when he decided to donate one of his kidneys to a stranger, a move inspired by Singer’s ideas. (Though he notes he’s not sure if he’s actually read any of Singer’s essays.) “It was just this incredibly positive experience for me,” he says. In an effort to keep chasing that high, he founded Waitlist Zero, a nonprofit that tries to solve the national kidney shortage by making it easier for people to donate healthy kidneys to those who need them. When COVID-19 arrived in New York, Morrison and a team of other effective altruists started 1Day Sooner.

Doctors gave placebos to Black men with syphilis (and told them they were being treated) while denying them medications like penicillin as part of the Tuskegee Syphilis Study, which ran from 1932 to 1972. (Credit: National Archives and Records Administration)

Philosophy in Action

By the end of 2020, when Patel added his name to a list of people willing to participate in the Oxford challenge trial, over 1.7 million COVID deaths had been reported to the World Health Organization. The U.K., where Patel lives, claimed some of the highest infection rates in the world as case numbers kept climbing. People wanted to help, and participating in scientific trials seemed like a real, tangible way to contribute to the greater good.

In May of 2021, Patel became the first person in the Oxford trial to be willingly infected with the SARS-CoV-2 virus. He lived in a room of Oxford’s John Radcliffe Hospital for over two weeks, working remotely by day and video-chatting with friends or watching movies in the evening. His mother worried about him, but for the most part his friends and colleagues were supportive.

Many medical ethicists, however, were not. It’s one thing to create a thought experiment; it’s quite another to put philosophy into action. Endless debates rage on Twitter and in online blogs and discussion groups like LessWrong and the Effective Altruism Forum. What problems matter the most? Which solutions merit time or money? The answers are often somewhat surprising.

For example, one of EA’s most common donation targets is the Against Malaria Foundation, an organization that distributes anti-malaria nets in Africa. The nonprofit reports distributing 200 million nets and estimates it’s prevented 150,000 deaths. At $2 per net, that’s a pretty good return on investment — and, in theory, it means that anyone can make a difference. More bang for your buck — and thus a better use of said buck, effective altruists would argue — than donating to your local food bank.

But the Oxford trial wasn’t an online debate about where to donate money. EA had moved out of the realm of theory and into a very real situation in which 1Day Sooner was asking people to risk their health and safety.

Deciding when it’s appropriate to run a human challenge trial requires balancing a complex series of variables, including a long history of medical testing on humans. Researchers have committed many abuses in the name of science and the betterment of humanity. In 1932, the U.S. government began the infamous Tuskegee Syphilis Study, in which they enlisted Black men who had already contracted the disease and denied them treatment in order to study its progression. Later, in 1946, the U.S. infected over 5,000 unsuspecting and unconsenting people in Guatemala with syphilis and other sexually transmitted diseases. And beginning in the mid-1950s, doctors at the Willowbrook State School on Staten Island coerced parents into consenting to studies that deliberately infected their developmentally disabled children with hepatitis. Those experiments would continue until the 1970s.

To combat these offenses, Congress passed the National Research Act in 1974, which requires institutional review boards to evaluate when it’s appropriate to use human subjects, and the U.K. has similar rules. The requirements are numerous and notably different from EA’s criteria. To justify a challenge trial, researchers must show there isn’t another way to gather their desired data; the study must be well designed; the disease has to be self-limiting, meaning that it won’t have any serious, long-term complications; and there has to be some kind of rescue therapy to keep participants from dying. Beyond that, the participants need to be representative of the population scientists want to treat, without placing additional burdens on already vulnerable communities like the homeless, children and the elderly.

Although many laws — both in the U.S. and abroad — have been adopted since the horrors of Willowbrook and Tuskegee, among others, American ethicists remain wary of repeating history. Those previous, egregious mistakes were instrumental in creating the current research structure. While idealists like Morrison might call the system paternalistic, Sulmasy says those protections are crucial.

(Credit: Jarun011/iStock via Getty Images)

Most of the time, medical ethicists debate the merits of human challenge experiments on a case-by-case basis — and they don’t always agree. “It’s going to be a calculus that good people of goodwill come to different conclusions about,” says Jeffrey Kahn, director of the Johns Hopkins Berman Institute of Bioethics. In the U.K., an ethics review committee of 18 experienced members decided that the Oxford COVID-19 trials would reveal new information and that researchers could manage the risks of long COVID and serious infection by carefully vetting participants and studying them in highly controlled hospital settings. But Kahn and others believe that in 2021, the Oxford trials were dangerous and unnecessary. There was no rescue therapy and no way to predict whether participants would develop long COVID. “It’s rolling dice,” Kahn says. “That’s crazy.”

Sulmasy agrees. “It’s true that nobody died in the initial SARs-CoV-2 trial. But could someone have died? I think the answer is yes. And anybody who denies that is sadly mistaken,” he says. Now, with treatments like Paxlovid and Remdesivir, Sulmasy believes these trials would be much safer and more ethical to run. And yet, ironically, the need is no longer as crucial.

Challenge trials often end up running into a paradox: Though there’s a lot to learn from infecting participants with a deadly disease, actually doing so may be unethical. Meanwhile, a less serious disease may not merit the trials at all. And scientists don’t know enough about an unknown disease to make a good judgment about whether it’s appropriate to give to volunteers.

Seventy-one vitals checks, 31 nose and throat swabs, 17 days in a hospital room and eight blood tests later, Patel walked out of John Radcliffe Hospital with a negative PCR test and a less-crippling aversion to needles — though he admits they still make him nervous. He doesn’t regret the experience, but he hasn’t jumped at the chance to enroll in any other trials.

Meanwhile, 1Day Sooner continues to push on, writing op-eds in scientific journals, drafting policy recommendations, enrolling volunteers for a hepatitis C challenge trial, and lobbying to make challenge trials part of the U.S.’s national pandemic preparedness plan. Morrison continues to argue that informed participants should be able to choose whether to take on the risks challenge trials pose. “When there’s disagreement among experts, then you should default to the people who are directly affected,” he says. For him, the moral accounting is clear: Millions of people die of diseases like tuberculosis, hepatitis C and COVID-19, and challenge trials could make a difference.

Nonetheless, participating in challenge trials isn’t a simple choice. 1Day Sooner and EA more broadly operate on the assumption that people can make decisions about themselves freely with good data and evidence to guide them. But signing up for a challenge trial isn’t just a personal decision. Human trials and vaccine research involve immense funding from governments, foundations and research centers. That funding is a kind of implicit endorsement, and it adds a layer of weight and pressure on research participants: Do this for the good of the country, the economy and humanity.

Kahn uses the same comparison that Peter Singer used five decades ago: Imagine a child is drowning. Governments don’t set up fences to keep people from rushing in to save them. On the other hand, there’s no institutional pressure pushing people to dive in either. When governments start asking people to risk their lives for the good of others, there needs to a consensus that the payoff is big enough to even merit the request. “People want to sacrifice themselves and be called heroic,” Kahn says, but that doesn’t mean institutions should ask them to lay down on the sword.

1 free article left
Want More? Get unlimited access for as low as $1.99/month

Already a subscriber?

Register or Log In

1 free articleSubscribe
Discover Magazine Logo
Want more?

Keep reading for as low as $1.99!


Already a subscriber?

Register or Log In

More From Discover
Recommendations From Our Store
Shop Now
Stay Curious
Our List

Sign up for our weekly science updates.

To The Magazine

Save up to 70% off the cover price when you subscribe to Discover magazine.

Copyright © 2024 Kalmbach Media Co.