Patients’ Attitudes to Informed Consent for Genomic Research With Donated Samples

Abstract

This international self-administered survey describes the attitudes of 279 patients, who had previously donated samples, regarding informed consent for future genomic research on donated tissue and explores factors associated with these attitudes. Most of the patients supported a fairly broad consent unless research was industry-sponsored. In multivariate analysis, support for broad informed consent was highest among neurology patients and patients who had already given a broad informed consent. There was a trend for Spaniards to be more supportive for a broad informed consent than their US counterparts. Exploring these opinions may help improve consent and explain why some patients reject broader forms of consent.