The tissue donation experience: a comparison of donor and nondonor families.

CONTEXT: Although there has been an increase in studies examining the experiences of organ donor and nondonor families, scant empirical research specifically concerning tissue donation has been conducted. OBJECTIVE: To assess the perceptions and attitudes of both donor and nondonor next of kin to whom a tissue donation request had been directed. DESIGN: Cross-sectional, 2-group analysis of a telephone survey. SETTING AND PARTICIPANTS: Participants were 507 adults who consented to tissue donation and 507 adults who refused consent to tissue donation following the death of a family member. All donation requests were made by telephone by trained staff. MAIN OUTCOME MEASURE: The primary outcome measures were demographic and contextual information surrounding the donation request, perceptions and attitudes toward tissue donation, and reasons for donation or refusal to donate. RESULTS: Findings suggest that most tissue donor family members were satisfied with the request and donation experience. Also, there were important differences in attitudes and perceptions between donor and nondonor family members, with nondonors reporting more negative attitudes and beliefs about tissue donation.

Meeting research needs with postmortem biospecimen donation: summary of recommendations for postmortem recovery of normal human biospecimens for research.

Normal human tissues, bodily fluids, and other biospecimens of known quality are essential for research to understand the development of cancer and other diseases and to develop new diagnostics and therapies. However, obtaining normal biospecimens appropriate for contemporary large-scale molecular and genomic research is one of the most challenging biospecimen acquisition problems for scientists and biospecimen resources that support research. Recognizing this challenge, the U.S. National Cancer Institute recently convened a series of workshops and meetings focused on the acquisition of normal tissues for research and produced an extensive document, Recommendations for Postmortem Recovery of Normal Human Biospecimens for Research. This article summarizes these recommendations, addressing key ethical, operational, and scientific elements for collecting normal reference biospecimens from postmortem donors in the U.S. Awareness of these recommendations can foster more effective collaborations and mitigate potential logistical challenges, while promoting postmortem biospecimen donation options for families and increasing the availability of high quality normal biospecimens for research. The recommendations have been put into practice in the collection of normal human biospecimens for the NIH Genotype-Tissue Expression Program (GTEx), a pilot study of human gene expression and regulation in multiple tissues which will provide valuable insights into the mechanisms of gene regulation and, in the future, its disease-related perturbations (http://commonfund.nih.gov/GTEx/).