Part of our work has included pushing for higher compensation in general, both because we believe it can make recruitment easier (and faster) but also because we think that pay should be more commensurate with the social value generated. I and a few other former human challenge volunteers wrote this paper published in Clinical Infectious Diseasescalling for US$20,000 in compensation as a baseline. That’s far higher than the norm for challenge studies; the highest I’ve seen is under $8,0000.
Re: Why EAs specifically, we delve into that a bit in footnote 9. In short, the study is still in a stage where it can be modified to substantially increase potential QALYs/DALYs saved. The voices of prospective participants could be very, very persuasive to researchers, regulators, ethicists when considering study design. Non-EAs are certainly capable of advocating and supporting changes as well, but we think EAs are much more likely to a) grasp the case for certain changes and b) be willing to advocate for them.
No one should feel like they’re obligated to be in a study as an EA (or as a “normie,” though I dislike that dichotomy with EAs). There are certainly people for whom time is better spent elsewhere, EA or not. But not everyone on the forum necessarily works for an EA organization, and there are also certainly people who feel they’d have spare capacity and time that they’d like to commit to this sort of thing.
This isn’t something I would do for personal medical reasons—but if it were, I would be much more interested in assurance of appropriate compensation if something went wrong than the amount of automatic compensation. For example, if I were to get really, really unlucky and die or become disabled from this somehow, I’d want to see most of my (public-sector law) salary covered at least until my son graduated college.
That could be tricky here; if I were to develop disabling liver trouble 10-15 years down the road, how would we know if the Hep C infection had anything to do with it? Maybe the risks of downstream unmeasurable ill effects are low enough to ignore here, though. Alternatively, there could be a rebuttable (or even irrebutable) presumption that if I develop significant liver trouble in the next X years, that was related to the Hep C infection. After all, presumably only those who were extremely unlikely to have liver trouble in the near to medium term were allowed to volunteer for this.
Woops, link fixed (here it is again). That article is part of a dedicated supplement to HCV challenge/CHIM.
Speaking in my personal capacity, I agree — I’d love for insurance/that sort of compensation to be the norm. That does not happen enough in medical research, challenge or otherwise.
I can see why an insurance agency would be very wary. Establishing causation of cancer in general is hard. Even if someone were screened and in perfect liver health during the CHIM, that doesn’t mean they won’t later adopt common habits (e.g. smoking or excessive drinking) that are risk factors for liver cancer.
Relatedly, another article in Clinical Infectious Diseasesreviewed liver cancer risks due to CHIM, concluding that “[a]lthough it is difficult to precisely estimate HCC risk from an HCV CHIM, the data suggest the risk to be very low or negligible.” This was based on analysis of three separate cohorts/datasets of people who had previously been infected with hepatitis C in other contexts. Still, the risk cannot be discounted entirely, and there are risks other than liver cancer that our FAQ document discusses, too.
Perhaps a workaround could be to establish some sort of trust that pays out to any former CHIM participant who develops liver cancer not obviously traceable to something like alcohol abuse disorder, and have this fund liquidate its assets after a certain number of decades. That would be very novel, expensive, and probably legally complicated, and I don’t think it’s been raised before.
Part of our work has included pushing for higher compensation in general, both because we believe it can make recruitment easier (and faster) but also because we think that pay should be more commensurate with the social value generated. I and a few other former human challenge volunteers wrote this paper published in Clinical Infectious Diseases calling for US$20,000 in compensation as a baseline. That’s far higher than the norm for challenge studies; the highest I’ve seen is under $8,0000.
Re: Why EAs specifically, we delve into that a bit in footnote 9. In short, the study is still in a stage where it can be modified to substantially increase potential QALYs/DALYs saved. The voices of prospective participants could be very, very persuasive to researchers, regulators, ethicists when considering study design. Non-EAs are certainly capable of advocating and supporting changes as well, but we think EAs are much more likely to a) grasp the case for certain changes and b) be willing to advocate for them.
No one should feel like they’re obligated to be in a study as an EA (or as a “normie,” though I dislike that dichotomy with EAs). There are certainly people for whom time is better spent elsewhere, EA or not. But not everyone on the forum necessarily works for an EA organization, and there are also certainly people who feel they’d have spare capacity and time that they’d like to commit to this sort of thing.
Link doesn’t work for me.
This isn’t something I would do for personal medical reasons—but if it were, I would be much more interested in assurance of appropriate compensation if something went wrong than the amount of automatic compensation. For example, if I were to get really, really unlucky and die or become disabled from this somehow, I’d want to see most of my (public-sector law) salary covered at least until my son graduated college.
That could be tricky here; if I were to develop disabling liver trouble 10-15 years down the road, how would we know if the Hep C infection had anything to do with it? Maybe the risks of downstream unmeasurable ill effects are low enough to ignore here, though. Alternatively, there could be a rebuttable (or even irrebutable) presumption that if I develop significant liver trouble in the next X years, that was related to the Hep C infection. After all, presumably only those who were extremely unlikely to have liver trouble in the near to medium term were allowed to volunteer for this.
Woops, link fixed (here it is again). That article is part of a dedicated supplement to HCV challenge/CHIM.
Speaking in my personal capacity, I agree — I’d love for insurance/that sort of compensation to be the norm. That does not happen enough in medical research, challenge or otherwise.
I can see why an insurance agency would be very wary. Establishing causation of cancer in general is hard. Even if someone were screened and in perfect liver health during the CHIM, that doesn’t mean they won’t later adopt common habits (e.g. smoking or excessive drinking) that are risk factors for liver cancer.
Relatedly, another article in Clinical Infectious Diseases reviewed liver cancer risks due to CHIM, concluding that “[a]lthough it is difficult to precisely estimate HCC risk from an HCV CHIM, the data suggest the risk to be very low or negligible.” This was based on analysis of three separate cohorts/datasets of people who had previously been infected with hepatitis C in other contexts. Still, the risk cannot be discounted entirely, and there are risks other than liver cancer that our FAQ document discusses, too.
Perhaps a workaround could be to establish some sort of trust that pays out to any former CHIM participant who develops liver cancer not obviously traceable to something like alcohol abuse disorder, and have this fund liquidate its assets after a certain number of decades. That would be very novel, expensive, and probably legally complicated, and I don’t think it’s been raised before.