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.
He was a lively and healthy 27-year-old without any prior health issues, hence feeling unconcerned about potential dangers such as blood clotting, breathlessness, or even the prospect of death.
He admits, somewhat surprisingly, that the only thing that truly concerned him was the needles. Patel had the intention of assisting researchers in their study of the virus, while also taking the opportunity to confront his fear of needles through a self-imposed exposure therapy.
After enrolling in the Oxford trial, Patel joined the ranks of almost 40,000 individuals worldwide who selflessly offered themselves for infection as part of 1Day Sooner, a nonprofit organization that supports the expanded use of human challenge trials. These unique trials involve participants willingly subjecting themselves to a disease, enabling scientists to examine their immune response and evaluate the efficacy of vaccines and treatments. Trials of this nature have played a crucial role in the development of remedies for diseases like malaria and yellow fever, and 1Day Sooner firmly believed that they could significantly expedite the arrival of a COVID-19 vaccine, thus potentially saving countless lives.
Despite the ongoing debate among scientists and ethicists regarding the usefulness and ethical implications of conducting these trials, the founders of 1Day Sooner, an organization headquartered in the U.S. with chapters in the U.K. and Africa, moved forward undeterred. They organized a congressional briefing, wrote op-eds, and successfully recruited enthusiastic volunteers. Josh Morrison, the president and co-founder of 1Day Sooner, criticizes the paternalistic nature of the current clinical trial regulations. He firmly believes that individuals should possess the autonomy to make decisions that impact their own lives. Informed individuals should have the freedom to assess the risks involved and make their own choices accordingly.
Unfortunately, things didn’t go as smoothly as anticipated. According to Daniel Sulmasy, the director of the Kennedy Institute of Ethics at Georgetown University, the U.K. SARS-CoV-2 trial experienced a slight delay. In fact, the trial scheduled by 1Day Sooner ended up taking place three days later than originally expected. To add to the unexpected turn of events, the mRNA vaccines had already been developed and distributed even before the experiment had been completed. It seems that timing played a crucial role in this situation, leading to a surprising outcome.
1Day Sooner might have lost the opportunity to contribute to the expedited development of COVID vaccines, but the organization remains active and continues to be an integral part of a broader movement influenced by effective altruism (EA) principles. Effective altruism promotes the idea that individuals should utilize their resources, including time, finances, and efforts, in ways that maximize benefits for the greatest number of people. Throughout the past twenty years, effective altruism has evolved from an obscure academic notion into a thriving network of benefactors, philanthropic institutions, and non-profit organizations.
However, the ongoing discussion surrounding 1Day Sooner’s methodology and their difficulties in implementing significant change on a large scale highlight the difficulties of putting EA’s seemingly straightforward principles into practice. Determining the most “effective” actions is a complex process. Combining this with the dark history of human medical experiments, the conflicting opinions of experts, and the urgency of a worldwide pandemic creates an ethical dilemma that both reveals the potential of the movement and its inherent risks.
Do we have a moral obligation to do good and make ethical choices? This question has puzzled and fascinated humanity for centuries. It pertains to our inherent sense of right and wrong, and the responsibilities we have towards each other and the world we inhabit. When we consider moral obligations, we enter into a realm where perplexity and burstiness reign supreme. It’s a concept that can be complex and challenging to navigate, as it requires us to weigh our actions and decisions against a moral framework. Yet, in the midst of this complexity, lies an opportunity to explore our values and contribute positively to the society we live in. So, do we have a moral obligation? The answer lies within each of us, as we embark on a journey to define our own set of moral principles and live by them.
The concept of effective altruism is deeply influenced by the philosophical ideas of utilitarianism. Back in the late 18th and early 19th centuries, thinkers like John Stuart Mill and Jeremy Bentham put forth the notion that it is in the best interest of society for people to prioritize the promotion of happiness and the reduction of suffering. According to this perspective, the worth of actions can be assessed based on the amount of happiness they generate compared to the amount of suffering they inflict. In simpler terms, utilitarianism suggests that the outcomes of actions justify the methods employed to achieve them.
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.
Many years after, Singer’s contributions became the catalyst for Holden Karnofsky and Elie Hassenfeld, both former hedge-fund analysts. Together, they established GiveWell in 2007, a commendable organization dedicated to assessing the efficacy and impact of various charitable endeavors. In a similar vein, Toby Ord and William MacAskill, philosophy grad students inspired by Singer’s teachings, made a commitment in 2009 to donate a substantial portion of their earnings to charitable causes. Two years later, they launched a virtual community with the goal of addressing global issues, discovering and implementing effective solutions, and scrutinizing the tangible outcomes of these solutions in real-world scenarios. These ingenious initiatives now fall under the comprehensive term “effective altruism,” exemplifying the power of Singer’s enduring influence.
To put it simply, Effective Altruism (EA) combines Singer’s call to action with the idea that the positive effects of an action can be measured and compared. Initially, EA was a small community until Dustin Moskovitz, co-founder of Facebook and Asana, and his wife Cari Tuna, committed to donating the majority of their wealth during their lifetime. In 2011, they joined forces with GiveWell, utilizing the organization’s analyses to maximize the impact of their charitable contributions. Tuna and Moskovitz have since become influential figures, generously donating to EA think tanks and causes, while actively promoting its principles through regular tweets. This philosophy has gained popularity among tech tycoons, attracting the likes of Jaan Tallinn, Skype’s founding engineer, and even Elon Musk himself.
Josh Morrison, one of the founders of 1Day Sooner, has found inspiration from the EA community and philosophy, driving him to become his best self. Back in 2011, Morrison, then a successful but unsatisfied corporate lawyer, made the bold decision to donate one of his kidneys to a complete stranger. This act of altruism was influenced by the ideas of philosopher Peter Singer, even though Morrison admits he may not have directly read Singer’s essays. Reflecting on his kidney donation experience, he describes it as an overwhelmingly positive and fulfilling journey. Determined to continue chasing that sense of fulfillment, Morrison established Waitlist Zero, a nonprofit organization aimed at addressing the national kidney shortage by facilitating easier kidney donations. When the COVID-19 pandemic hit New York, Morrison joined forces with a group of effective altruists and together they launched 1Day Sooner, an initiative dedicated to exploring the feasibility of safely accelerating vaccine development.
Philosophy in Action is a captivating and thought-provoking concept that involves taking practical steps to live a fulfilling and meaningful life. It focuses on the idea of putting philosophical principles into practice and applying them to real-life situations. By adopting this approach, individuals can actively engage in decision-making processes, taking into account their values, beliefs, and personal experiences. Just like a lively conversation between friends, Philosophy in Action encourages an informal and relatable way of thinking, allowing individuals to explore the depths of their thoughts and emotions. With its emphasis on active involvement and personal reflection, Philosophy in Action invites everyone to embark on a journey of self-discovery and growth, offering a path towards a more enriched and satisfying existence. So, let’s dive in and explore the wonders and complexities of this captivating philosophy!
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 2021, Patel made a bold move by becoming the pioneer in the Oxford trial to intentionally expose himself to the SARS-CoV-2 virus. Throughout a span of more than two weeks, he resided within the confines of a room at Oxford’s prestigious John Radcliffe Hospital. By day, Patel managed to carry out his work remotely, while his evenings were filled with engaging in video chats with friends or enjoying a few movies. Although his mother expressed concern, his peers and acquaintances showed remarkable support for his decision.
Medical ethicists often find themselves in disagreement when it comes to putting philosophical ideas into practice. While it is relatively easy to create hypothetical scenarios and thought experiments, actually implementing these principles is a different story. On platforms like Twitter, online blogs, and discussion groups such as LessWrong and the Effective Altruism Forum, there are ongoing debates regarding which problems should be prioritized and which solutions are worth investing time and resources in. Interestingly, the conclusions reached in these discussions are often unexpected and may challenge conventional thinking.
One organization that EA regularly supports is the Against Malaria Foundation, which operates in Africa to provide mosquito nets that help prevent the spread of malaria. They have already distributed a staggering 200 million nets, and their efforts are estimated to have saved around 150,000 lives. When you think about it, spending just $2 for a net that has such a profound impact is truly remarkable. It goes to show that every individual has the power to make a significant difference. In comparison, supporting your local food bank, while still a noble cause, may not have the same level of impact. So, if you’re looking to maximize the effectiveness of your donations, effective altruists argue that supporting organizations like the Against Malaria Foundation truly gives you more bang for your buck.
However, the Oxford test did not involve an internet discussion on which charity to contribute funds to. EA had transitioned from abstract reasoning to an actual scenario where 1Day Sooner urged individuals to jeopardize their well-being and security.
Determining the appropriate circumstances to conduct a human challenge trial involves a delicate balance of multiple factors while taking into account the extensive history of medical tests performed on people. Throughout the course of history, there have been numerous instances where researchers have taken advantage of individuals in the pursuit of scientific knowledge and the advancement of society. For instance, the notorious Tuskegee Syphilis Study, initiated by the U.S. government in 1932, enrolled Black men who were already afflicted with the disease and deliberately withheld treatment to observe its progression. Similarly, in 1946, the U.S. conducted unethical experiments in Guatemala, infecting over 5,000 unsuspecting individuals with syphilis and other sexually transmitted diseases without their informed consent. Additionally, during the mid-1950s, doctors at the Willowbrook State School on Staten Island coerced parents into permitting studies that purposely infected their intellectually disabled children with hepatitis. These experiments persisted until the 1970s, causing significant harm and posing ethical dilemmas.
In order to tackle these transgressions, Congress enacted the National Research Act in 1974. This legislation mandates that institutional review boards assess the appropriateness of utilizing human subjects, which is similar to the regulations in the United Kingdom. The prerequisites for conducting a challenge trial are manifold and differ significantly from EA’s guidelines. To warrant such a trial, researchers must demonstrate that no other means are available to obtain the desired data. Moreover, the study must be meticulously designed, and the affliction must be self-limiting, devoid of any severe or lasting complications. Additionally, a rescue therapy must be in place to prevent harm or fatalities among the participants. Furthermore, the participants should be a representative sample of the population that scientists intend to treat. It is crucial, however, not to impose further burdens on already vulnerable communities such as the homeless, children, and the elderly.
Despite numerous regulations implemented in the United States and other countries to prevent the recurrence of events like Willowbrook and Tuskegee, there is still a sense of caution among American ethicists. These past atrocities have played a significant role in shaping the current landscape of research. While Morrison and other optimists may label the system as overly protective, Sulmasy emphasizes the importance of such safeguards in place.
Medical ethicists often engage in debates over the advantages and disadvantages of conducting human challenge experiments, with differing opinions being quite common. According to Jeffrey Kahn, the director of the Johns Hopkins Berman Institute of Bioethics, these debates arise due to the fact that individuals with good intentions may arrive at distinct conclusions. In the United Kingdom, for example, an ethics review committee made up of 18 knowledgeable members determined that the Oxford COVID-19 trials would yield valuable insights, and that the risks of long COVID and severe infection could be effectively managed by thoroughly evaluating participants and conducting the studies in carefully controlled hospital environments. However, Kahn and some other experts view the Oxford trials conducted in 2021 as both unsafe and unnecessary. They argue that since there was no rescue therapy available and no means to anticipate whether participants would experience long COVID, it was akin to taking a gamble. “That’s absolutely absurd,” concludes Kahn.
Sulmasy is in complete agreement. He acknowledges that in the initial trial of SARs-CoV-2, thankfully, no fatalities occurred. However, he strongly believes that it was indeed possible for someone to have died. Anyone who denies this fact, according to Sulmasy, is greatly mistaken. Nowadays, with the availability of treatments like Paxlovid and Remdesivir, Sulmasy is of the opinion that running such trials would be significantly safer and ethically preferable. Ironically, though, the urgency for conducting these trials is not as paramount as before.
When it comes to challenge trials, we often encounter a perplexing issue. On one hand, infecting participants with a deadly disease can offer valuable insights. However, this raises ethical concerns as intentionally causing harm is questionable. On the other hand, less severe diseases may not provide sufficient justification for conducting such trials. Moreover, when faced with an unknown disease, scientists lack the necessary knowledge to determine whether it is suitable for volunteer testing. As a result, challenge trials find themselves in a complex situation, where finding the right balance between gaining knowledge and ensuring ethical conduct is a real challenge.
After going through a series of medical procedures, including 71 vital checks, 31 swabs of the nose and throat, spending 17 days in a hospital room, and undergoing eight blood tests, Patel finally left the John Radcliffe Hospital with a negative PCR test result. Not only did he receive good news from the test, but he also managed to overcome his fear of needles to some extent, although he admits they still make him anxious. Despite the challenging journey, Patel doesn’t have any regrets about the experience. However, he hasn’t eagerly signed up for any further medical trials since then.
In the midst of it all, 1Day Sooner remains steadfast in its mission. The organization is actively promoting its cause through various avenues, including publishing thought-provoking articles in scientific journals, developing comprehensive policy recommendations, recruiting volunteers for a challenging hepatitis C trial, and advocating for the inclusion of challenge trials in the United States’ national pandemic readiness strategy. Morrison, a prominent figure in 1Day Sooner, is unwavering in his belief that individuals should have the right to make an informed decision when it comes to participating in these trials and accepting the associated risks. He argues that when experts themselves cannot reach a consensus, the voices of those directly impacted should take precedence. In his view, the moral calculus is clear: countless lives are lost to diseases like tuberculosis, hepatitis C, and COVID-19, and challenge trials have the potential to make a significant impact in combatting these health crises.
Engaging in challenge trials is not an easy decision to make. Organizations like 1Day Sooner and EA operate under the belief that individuals can freely choose for themselves with reliable information. However, signing up for a challenge trial is not solely a personal choice. It involves substantial financial support from governments, foundations, and research centers, which serves as an indirect endorsement and places additional responsibility on the participants. They are urged to consider the greater good – contributing to the well-being of the country, economy, and humankind as a whole.
In discussing the matter at hand, Kahn draws upon a fitting analogy that echoes the sentiments expressed by Peter Singer fifty years ago: Picture, if you will, a scenario in which a child is in grave danger of drowning. In such a situation, it is not customary for governing bodies to erect barriers or fences to prevent well-intentioned individuals from leaping to the child’s rescue. Conversely, there is also no inherent obligation for people to take the plunge and save the child. Thus, when governments implore individuals to put their lives on the line for the greater good, it becomes imperative to establish a consensus regarding the magnitude of the potential benefit that would justify such a request. As Kahn astutely posits, while many are willing to make personal sacrifices and seek recognition as heroes, it does not necessarily mean that institutions should actively solicit such acts of self-sacrifice.