At exactly 11:04 a.m. on April 6, 2022, I stood within a medical isolation facility and gulped down a solution of Shigella flexneri bacteria, surrounded by half a dozen nurses and doctors in protective equipment. I contracted dysentery, the signature condition caused by the Shigella family.
What would possess someone to do such a thing? I drank the bespoke pathogenic cocktail as part of what's known as a "human challenge study" run by the Center for Vaccine Development at the University of Maryland, Baltimore. In a human challenge study, adult volunteers are exposed to a pathogen. The study I was involved in was intended to test an experimental vaccine. The process may sound somewhat medieval, but these studies are critical scientific tools that prioritize participant safety. From 1980 to 2021, over 15,000 volunteers have been exposed to one of dozens of diseases in such studies, and not one has died.
Dysentery can be fatal. While Shigella is treatable with antibiotics, resistance is evolving at a worrying pace, and tens of thousands of children still succumb to it every year in the developing world. Those it does not kill are often left with stunted growth.
During my 10-day inpatient quarantine, however, I was never afraid for my life. I had been thoroughly screened to make sure I was otherwise healthy, had a dedicated medical research team monitoring me 24/7, and was given antibiotics once my symptoms became severe.
Death, then, was anything but certain for me. Taxes, however, remain quite certain.
For my assistance in the development of a potentially lifesaving vaccine, I was paid $7,350. My motivations were altruistic to a degree: I wanted to pay my privilege forward. As I told Business Insider, however, I am not a complete saint and would not have done it for free.
As far as the Internal Revenue Service (IRS) is concerned, the compensation for my bout of dysentery has zero charitable component; it's just regular old income, indistinguishable from, say, freelance writing or mowing lawns. If, God forbid, I am ever audited, I hope the IRS agent believes me when I say that's just my diarrhea money.
I maintain, though, that I should not be taxed on that $7,350 at all: Treating clinical trial compensation as taxable income is just bad policy.
At the risk of sounding self-important, healthy human medical volunteers, indispensable in the development of numerous vaccines and therapeutics, probably have done more good for the world as a group than have U.S. Olympic medal winners, whom Congress exempted from taxes on their prizes. Participation in a trial for a vaccine is, at the very least, more socially valuable than mere membership in a gym.
The logic of tax breaks for medical experiment volunteers extends to the state level as well. Surely, if tax credits for donating venison and growing oysters are acceptable in Maryland, so too should be a tax credit for my diarrhea.
Research suggests that money is indeed a primary motive for healthy clinical trial participants. Altruism is also an important factor for most, but people don't usually consent to getting injected with malaria or taking a gulp of diarrheal germ juice only to feel good about themselves. It is notoriously difficult to recruit and retain clinical trial subjects in general.
It's basic marginal economics: Unquestionably, there are people for whom $7,350 is worth the risk of dysentery (not everyone in my cohort got sick), but the post-tax sum is not. At the very least, there's a base 15.3 percent self-employment tax—which knocks off just over $1,100—even before state and federal income taxes take their bite. Clinical studies certainly don't adjust compensation to make it equal across all tax brackets.
The state has already decided it has a strong interest in medical research. The federal government disburses tens of billions of dollars every year in research grants via the National Institutes of Health, and tax breaks for volunteer compensation could only help speed up the numerous clinical trials that some of that money goes toward. In short, we currently tax-disincentivize otherwise very socially and economically valuable behavior.
Why can't studies just raise their compensation rates to better attract participants? As a whole, the field of research ethics is deeply averse to paying participants "too much" money, for fear of "undue inducement"—compensation so grand that it obliterates a subject's rational ability to evaluate risk and thus eliminates their ability to provide truly informed consent. (Payment is usually a few thousand dollars at most; mine was rather high.)
In fact, some ethicists are anxious over any payment at all for research subjects. An influential survey of research professionals, bioethicists, and institutional review board (IRB) members found a "pervasive ethical concern that offering payment to subjects will influence a prospective research participant's decision to enroll or remain in a trial." An astonishing 65 percent of them "agreed that participants are coerced if the offer of payment makes them participate when they otherwise would not." Yet payments continue, of course, because without payments, research would grind to a halt.
As a paid research guinea pig, I find this whole "undue inducement" framing paternalistic. And the notion that payment equals coercion is self-evidently absurd if applied across the range of human economic relations. If a study has adequate oversight, its informed consent process should be robust enough to ensure volunteers are of sound mind and can truly evaluate the risks of participation as autonomous adults, even if they are compensated in small part for those risks.
The "undue inducement" argument is rooted in a general distrust of markets in general, especially for something so visceral as a medical study. Combined with vague regulatory guidelines, the upshot is a functional price ceiling in the name of protecting participants: IRBs will reject payment that is "too high." Yet paying $1,000 versus, say, $10,000 does not eliminate any supposedly dastardly market dynamic—it simply shifts this supposed burden to low-income people, for whom $1,000 is more likely to be worth the discomfort and opportunity cost. We already know so-called professional human guinea pigs in Phase I nonchallenge drug and vaccine studies treat the field as a sort of labor market, weighing the options at different research centers and for different studies.
In the name of protecting the economically vulnerable, then, the research ethics field appears to have decided that paying people more is unethical and bad for them.
Fortunately, a clinical trial compensation tax break could raise aggregate payment to volunteers. This idea ought to have cross-ideological appeal; a tax break for the right, more lifesaving health research for the government's dollar for the left.
Clinical trials are key steps in the development of lifesaving medical advances, and the state already assumes a role in their promotion. Taxes on volunteer compensation depress participation, thereby stalling medical progress and undermining the efforts the state already funds, not to mention the many private trials not funded by the government.
Thus, the tax on my dysentery money must go—preferably before I file this year.
Article/Archive
What would possess someone to do such a thing? I drank the bespoke pathogenic cocktail as part of what's known as a "human challenge study" run by the Center for Vaccine Development at the University of Maryland, Baltimore. In a human challenge study, adult volunteers are exposed to a pathogen. The study I was involved in was intended to test an experimental vaccine. The process may sound somewhat medieval, but these studies are critical scientific tools that prioritize participant safety. From 1980 to 2021, over 15,000 volunteers have been exposed to one of dozens of diseases in such studies, and not one has died.
Dysentery can be fatal. While Shigella is treatable with antibiotics, resistance is evolving at a worrying pace, and tens of thousands of children still succumb to it every year in the developing world. Those it does not kill are often left with stunted growth.
During my 10-day inpatient quarantine, however, I was never afraid for my life. I had been thoroughly screened to make sure I was otherwise healthy, had a dedicated medical research team monitoring me 24/7, and was given antibiotics once my symptoms became severe.
Death, then, was anything but certain for me. Taxes, however, remain quite certain.
For my assistance in the development of a potentially lifesaving vaccine, I was paid $7,350. My motivations were altruistic to a degree: I wanted to pay my privilege forward. As I told Business Insider, however, I am not a complete saint and would not have done it for free.
As far as the Internal Revenue Service (IRS) is concerned, the compensation for my bout of dysentery has zero charitable component; it's just regular old income, indistinguishable from, say, freelance writing or mowing lawns. If, God forbid, I am ever audited, I hope the IRS agent believes me when I say that's just my diarrhea money.
I maintain, though, that I should not be taxed on that $7,350 at all: Treating clinical trial compensation as taxable income is just bad policy.
At the risk of sounding self-important, healthy human medical volunteers, indispensable in the development of numerous vaccines and therapeutics, probably have done more good for the world as a group than have U.S. Olympic medal winners, whom Congress exempted from taxes on their prizes. Participation in a trial for a vaccine is, at the very least, more socially valuable than mere membership in a gym.
The logic of tax breaks for medical experiment volunteers extends to the state level as well. Surely, if tax credits for donating venison and growing oysters are acceptable in Maryland, so too should be a tax credit for my diarrhea.
Research suggests that money is indeed a primary motive for healthy clinical trial participants. Altruism is also an important factor for most, but people don't usually consent to getting injected with malaria or taking a gulp of diarrheal germ juice only to feel good about themselves. It is notoriously difficult to recruit and retain clinical trial subjects in general.
It's basic marginal economics: Unquestionably, there are people for whom $7,350 is worth the risk of dysentery (not everyone in my cohort got sick), but the post-tax sum is not. At the very least, there's a base 15.3 percent self-employment tax—which knocks off just over $1,100—even before state and federal income taxes take their bite. Clinical studies certainly don't adjust compensation to make it equal across all tax brackets.
The state has already decided it has a strong interest in medical research. The federal government disburses tens of billions of dollars every year in research grants via the National Institutes of Health, and tax breaks for volunteer compensation could only help speed up the numerous clinical trials that some of that money goes toward. In short, we currently tax-disincentivize otherwise very socially and economically valuable behavior.
Why can't studies just raise their compensation rates to better attract participants? As a whole, the field of research ethics is deeply averse to paying participants "too much" money, for fear of "undue inducement"—compensation so grand that it obliterates a subject's rational ability to evaluate risk and thus eliminates their ability to provide truly informed consent. (Payment is usually a few thousand dollars at most; mine was rather high.)
In fact, some ethicists are anxious over any payment at all for research subjects. An influential survey of research professionals, bioethicists, and institutional review board (IRB) members found a "pervasive ethical concern that offering payment to subjects will influence a prospective research participant's decision to enroll or remain in a trial." An astonishing 65 percent of them "agreed that participants are coerced if the offer of payment makes them participate when they otherwise would not." Yet payments continue, of course, because without payments, research would grind to a halt.
As a paid research guinea pig, I find this whole "undue inducement" framing paternalistic. And the notion that payment equals coercion is self-evidently absurd if applied across the range of human economic relations. If a study has adequate oversight, its informed consent process should be robust enough to ensure volunteers are of sound mind and can truly evaluate the risks of participation as autonomous adults, even if they are compensated in small part for those risks.
The "undue inducement" argument is rooted in a general distrust of markets in general, especially for something so visceral as a medical study. Combined with vague regulatory guidelines, the upshot is a functional price ceiling in the name of protecting participants: IRBs will reject payment that is "too high." Yet paying $1,000 versus, say, $10,000 does not eliminate any supposedly dastardly market dynamic—it simply shifts this supposed burden to low-income people, for whom $1,000 is more likely to be worth the discomfort and opportunity cost. We already know so-called professional human guinea pigs in Phase I nonchallenge drug and vaccine studies treat the field as a sort of labor market, weighing the options at different research centers and for different studies.
In the name of protecting the economically vulnerable, then, the research ethics field appears to have decided that paying people more is unethical and bad for them.
Fortunately, a clinical trial compensation tax break could raise aggregate payment to volunteers. This idea ought to have cross-ideological appeal; a tax break for the right, more lifesaving health research for the government's dollar for the left.
Clinical trials are key steps in the development of lifesaving medical advances, and the state already assumes a role in their promotion. Taxes on volunteer compensation depress participation, thereby stalling medical progress and undermining the efforts the state already funds, not to mention the many private trials not funded by the government.
Thus, the tax on my dysentery money must go—preferably before I file this year.
Article/Archive
