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Cancer patients' attitudes toward future research uses of their donated tissue: Preliminary results of a mail survey study.

6009 Background: Millions of tissue samples are stored in the United States, but little is known about the attitudes of tissue donors. Understanding the attitudes of those who donate tissue for use in future research would inform the design of studies using stored tissues (ST).


METHODS
Eligible subjects included cancer patients who donated remaining tissue after biopsy or surgery to the Indiana University Cancer Center Tissue Bank. All subjects signed informed consent to donate tissue. A convenience sample were approached for participation. A survey instrument was developed from literature review and expert input, and refined by focus groups.


RESULTS
243 surveys were mailed, and 196 completed surveys were returned (response rate 80.7%). Respondents were 70% married, 93% white, 54% female. 57% had completed at least some college. Average age was 60. Average time since diagnosis was 13.8 months. 81% of respondents remembered donating tissue. 61% were not at all or a little concerned about the privacy of their ST. >80% of subjects agreed that their ST could be used in future research on their type of cancer, other cancers, and other diseases,. Non-whites were less likely than whites to allow tissue to be used in research (p = 0.0128). Around 40% of respondents agreed that researchers should have to recontact them before using their ST. Non-whites and less educated subjects were more likely to want to be recontacted for each research use of their ST. 90% of subjects would allow their ST to be used by university researchers, but only 60% agreed that ST could be used by pharmaceutical companies. 39% objected to the use of STs to develop a treatment for profit. No differences were found in willingness of ST to be used in future research whether samples were identified, de-identified, or linked. 60% of respondents wanted to be notified of research results that would impact their, or their children's, health whether treatments were available or not, and whether results had been validated or not.


CONCLUSIONS
This cohort of cancer patients was very willing to allow their ST to be used in future research on all conditions, but a significant minority desired to be recontacted each time ST were used. These findings do not support policies based on a simple presumed consent model. No significant financial relationships to disclose.