Literature DB >> 26412739

Challenging the Sanctity of Donorism: Patient Tissue Providers as Payment-Worthy Contributors.

Rebecca A Johnson, David Wendler.   

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.

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Year:  2015        PMID: 26412739     DOI: 10.1353/ken.2015.0021

Source DB:  PubMed          Journal:  Kennedy Inst Ethics J        ISSN: 1054-6863


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Authors:  David Wendler; Annette Rid
Journal:  Bioethics       Date:  2017-02       Impact factor: 1.898

2.  Patient perspectives on compensation for biospecimen donation.

Authors:  Samuel C Allen; Minisha Lohani; Kristopher A Hendershot; Travis R Deal; Taylor White; Margie D Dixon; Rebecca D Pentz
Journal:  AJOB Empir Bioeth       Date:  2018-04-26

3.  Who Owns the Data in a Medical Information Commons?

Authors:  Amy L McGuire; Jessica Roberts; Sean Aas; Barbara J Evans
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

  3 in total

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