My name is Jake. I live in DC. I used to work in foreign affairs, primarily Chinawatching, and then as an investigative researcher (think due diligence, political mudslinging, corporate accountability, etc.). Then, I got dysentery as part of a human challenge trial. I tweeted about it like a maniac, went viral, and now I'm here. Life is funny.
Feel free to reach out via Twitter DM or LinkedIn, or email me at jake dot eberts @ 1daysooner dot org.
Unless it's very obviously about 1Day Sooner stuff, assume what I post here is my own personal opinion.
Shoutout to the 130-ish people in the UK who volunteered to be infected with malaria in two separate studies at various stages of the R21 development process! Those studies helped identify Matrix-M as the ideal adjuvant, and also provided insight into the optimal dose/vaccination schedule.
I feel motivated as a former due diligence/investigative research guy to expand briefly on where my frustration came from. I think it's hard to understate how stunning a failure of due diligence this was in the first round.
Due diligence for corporate work involves much more than Googling, but, like, the first step is often just Googling. When you Google Nya Dagbladet, the Swedish Wikipedia page pops up. (The English one did not exist last year.)
Skimming the page as it existed circa fall 2022 thru Google Translate should have immediately raised several red flags, even for people not familiar with Swedish politics. These flags obviously would be taken with a grain of salt, because it's Wikipedia, but it stuns me that they were ignored at first. These immediately apparent flags include:
Some of those flags don't immediately check out — e.g., the ethnopluralist label is cited to the paper's about page, but is not specifically there (nor was it there in archived version of the website). But unless we assume the Wikipedia page is a straight up hit job — which is unlikely, and would be ruled out by checking even a few of the references — then proper due diligence research would have started with a very, very heavy level of scrutiny.
But it sounds like what happened is they merely checked the Nya Dagbladet website and proposal and didn't see anything suspicious (again, a due diligence failure, but the website is not quite as blatant at first glance as say, Breitbart News), and wrote off the evidence of far-right ties and views because "quality of public discourse worldwide has degraded so badly" such that you can't be sure.
The baseline Wikipedia + sources check took about twenty minutes to do, including typing this up here. Strong due diligence work is really important. I get that they ultimately did not give the grant, but to me, it's very disturbing that it even made it past the first half-hour sniff test.
If you're not already aware of the University of Chicago's Scav, I'd highly recommend poaching some ideas from them if you ever need inspiration. (E.g., Item 10 from 2021: "A collection of baseball cards for members of the Los Angeles Biblically Accurate Angels baseball team" or Item 262, 2015, "a series of cartoons [drawn] on at least 30 tissues such that when they are rapidly pulled out of a tissue box, they create an animation.")
It's great that you know the results. While relatively minor in the grand scheme of things, it's frustrating that trials, at least here in the US, don't often share results with participants, even though it's theoretically as simple as a mass email along the lines of "here's what we learned" — presumably an email they're already sending to colleagues, funders, etc., in some form. I had to ask the people running the Shigella trial for my data (not available yet, but I really wanna see if I got the placebo or not)!
Hi! These are all valid concerns, and I'll note that many of them are covered in the study eligibility criteria (see NCT05123222). People are excluded if there is any "[e]vidence of clinically significant neurologic, cardiac, pulmonary, hepatic, rheumatologic, autoimmune, or renal disease", among many other factors.
The approx. 2.0 per 10,000 Guillain-Barré incidence estimate is based on the published scientific literature. The 2018 review (Romero, Delorey, Sjevar & Johansson 2018) covers outbreaks or sub-outbreaks in 11 places. Like I stated above, I was unable to find comprehensive estimates for other neurological conditions, which occur with lower frequency. If you have more recent estimates, I'd be happy to update.
Whether or not someone participates is, of course, up to them. I was able to get work done during my inpatient Shigellosis stay and enjoyed the experience, to the extent you can "enjoy" getting awful diarrhea. I don't think this is very much a waste of human capital for everyone — plenty of people may have downtime they're willing to donate to a cause. For Zika, the productivity loss is probably relatively minor (if you can work remotely) for reasons outlined in the post. I do not agree that it would be a "very bad use" of EA human capital, which I think is a pretty high bar.
Participation in any medical study involving exposure to a pathogen necessarily entails risk and no one should ever feel pressured to participate in any study, especially if they're worried about potential health consequences. I'll note that several trials are run even though there are no rescue treatments, e.g. Covid-19, in which 1Day Sooner has had several volunteers, and norovirus. It is often precisely because treatments are lackluster that these sort of trials are important. There have been no deaths in a human challenge trial to our knowledge since at least 1980 (Adams-Phipps et al. 2022, based on research 1Day Sooner commissioned) (this, of course, is not predictive of what happens in a Zika challenge trial, but does underscore that these trials are generally designed with participant safety as the foremost priority).
I agree with this! People get filtered out of the studies for reasons completely beyond their control, even if they really want to join. You just can't help it if your white blood cell count is a tad too low or you have a slight fever the day of study admission.