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We thank the authors of the five commentaries for their careful and highly constructive consideration of our paper,1 which has enabled us to develop our proposal.
General points
Participation in research has traditionally been viewed as altruistic. Over time, payments for inconvenience and lost wages have been allowed, as have small incentives, usually in kind. The problem, particularly with controlled human infection model (CHIM) research or ‘challenge studies’, is that they are unpleasant and time-consuming. Researchers want to offer carrots to incentivise participation (as Fernandez Lynch and Largent suggest2).
We are proposing that research participation be viewed as a job with the full suite of financial entitlements of fairly remunerated work, including payment for risk and labour law protections. This would be a significant shift from current practice and standards.
Ambuehl, Ockenfels and Roth have grasped this basic point and have beautifully elaborated how a fair price could be arrived at using economic theory. They build on our proposal helpfully and suggest
‘(1) salary for time involvement that is adjusted to account for the amount of discomfort experienced during participation, (2) insurance against ex post adverse outcomes and (3) ex ante compensation for risks that cannot be compensated ex post (such as death).’3
This effectively addresses Fernandez Lynch and Largent’s2 concern (echoed by Jamrozik and Selgelid4) that compensation for risk is inappropriate for harms which do not eventuate. However, because death cannot be compensated for, there must be payment for risk of death, as Ambuehl, Ockenfels and Roth convincingly argue.3
Indeed, the three-part model suggested by Ambuehl, Ockenfels and Roth makes us realise that job model would be a better title for our model than a payment for risk model.
The alternative to a properly remunerated job model is the original altruistic model. However, this …
Footnotes
Funding JS and AG were supported by the Wellcome Trust (203132/Z/16/Z and 104848/Z/14/Z). JS and AG are members of the Oxford Martin Programme for Collective Responsibility for Infectious Disease. Through his involvement with the Murdoch Children’s Research Institute, JS was supported by the Victorian Government’s Operational Infrastructure Support Program. AG was supported by an AHRC/UKRI grant (AH/V006819/1).
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Commissioned; internally peer reviewed.
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