What research participants want to know about genetic research results: the impact of "genetic exceptionalism".

The disclosure of individual genetic results has generated an ongoing debate about which rules should be followed. We aimed to identify factors related to research participants' preferences about learning the results of genomic studies using their donated tissue samples. We conducted a cross-sectional survey of 279 patients from the United States and Spain who had volunteered to donate a sample for genomic research. Our results show that 48% of research participants would like to be informed about all individual results from future genomic studies using their donated tissue, especially those from the U.S. (71.4%) and those believing that genetic information poses special risks (69.7%). In addition, 16% of research participants considered genetic information to be riskier than other types of personal medical data. In conclusion, our study demonstrates that a high proportion of participants prefer to be informed about their individual results and that there is a higher preference among those research subjects who perceive their genetic information as riskier than other types of personal medical data.

Patients' attitudes to informed consent for genomic research with donated samples.

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.