Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey

Journal of Empirical Research on Human Research Ethics : JERHRE
Michele C GornickScott Y H Kim

Abstract

The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of eight NWI scenarios on people's attitudes toward research studies being performed on samples donated to biobanks by assessing willingness to donate, attitudes toward disclosure of NWIs, impact of timing and format of disclosure (number of NWIs disclosed on a page), and participant factors associated with willingness to donate. Baseline willingness to donate to biobanks prior to any mention of NWIs was comparable with previous studies, at 85% to 89%. Most participants wanted NWI disclosures prior to donation to biobanks, but far fewer favored specific consent. Overall pattern of responses showed that as participants receive more information about NWIs, willingness to donate decreases in a scenario dependent manner. Specifically, NWI conce...Continue Reading

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Citations

May 17, 2018·Journal of Medical Internet Research·Perrine CréquitPhilippe Ravaud
Jun 7, 2018·The New England Journal of Medicine·Michelle M MelloSteven N Goodman
Aug 7, 2018·Health Affairs·Kayte Spector-BagdadyJodyn Platt
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Nov 20, 2015·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Nanibaa' A GarrisonEllen W Clayton
Mar 13, 2016·Life Sciences, Society and Policy·Raymond G De VriesScott Y H Kim

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Software Mentioned

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