title: Challenging the Sanctity of Donorism: Patient Tissue Providers as Payment-Worthy Contributors.
abstract: Many research projects rely on human biological materials and some of these projects generate revenue. Recently, it has been argued that investigators have a moral claim to share in the revenue generated by these projects, whereas persons who provide the biological material have no such claim (Truog, Kesselheim, and Joffe 2012). In this paper, we critically analyze this view and offer a positive proposal for why tissue providers have a moral claim to benefit. Focusing on payment as a form of benefit, we argue that research is a joint project and propose a contribution principle for paying participants in those joint projects. We distinguish between contributions that shape a project's revenue generating properties, grounding a claim to payment, and contributions that fail to ground such a claim. We conclude, contrary to existing arguments and practices, that some tissue providers have a moral claim to payment beyond compensation for risk and burden. This conclusion suggests that investigators, institutions, and sponsors should reconsider the fairness of their current practices.
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Johnson
authors.forename: David
authors.initials: D
authors.lastname: Wendler
mesh_terms: D035843:Biomedical Research / Q000191:economics / Q000941:ethics*; D003132:Commerce / Q000941:ethics; D006801:Humans; D028681:Moral Obligations; D012108:Research Personnel / Q000191:economics / Q000941:ethics*; D035842:Research Subjects; D009927:Tissue and Organ Procurement / Q000191:economics*