Authorization of tissues from deceased patients for genetic research

Abstract

Tissues from deceased donors provide important data for genomic research and Organ Procurement Organizations (OPOs) play a significant role. To understand the decisions of families who donated for transplantation and made decisions about donation to the Genotype-Tissue Expression Project (GTEx), we examined donation decisions of family decision makers (FDMs). 413 families were interviewed by telephone. The OPO staff who made the transplant and research requests completed self-administered surveys; a total of 309 matching surveys from 99 OPO staff were obtained. 76.8% of families donated to the GTEx project. Logistic regression analysis found that FDM consent to GTEx donation was associated with endorsement of policies to promote biobanking (OR = 1.35), positive attitudes about medical research (OR = 1.1), lack of concern regarding a breach of confidentiality (OR = 1.54), comfort with tissue donation (OR = 1.24), and prior authorization to solid organ donation (OR = 3.17). OPO staff characteristics associated with GTEx donation included being female (OR = 3.57), White (OR = 4.97), comfort with hospital staff role in donation (OR = 1.61), and number of topics discussed with families (OR = 57.9). Donor type, FDM attitudes, OPO staff sociodemographics, OPO comfort with the GTEx authorization process, and intensity of discussing research-specific issues were significantly associated with GTEx donation decisions.

Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives

“…Further, the literature on perspectives of surrogate consent for donation of samples for research in deceased patients continues to evolve. (Wilson-Genderson et al, 2018) This issue may be more relevant when samples are donated during a period of critical illness and risk of mortality may be high.…”

“…Although the literature demonstrates children’s desire to be involved in decision making about participation in a biorepository (Geller, Tambor, Bernhardt, Fraser, & Wissow, 2003; Kong, Tarling, Strahlendorf, Dittrick, & Vercauteren, 2016), the appropriate role for children in the critical care setting remains unclear. Furthermore, the literature on perspectives of surrogate consent for donation of samples for research in deceased patients continues to evolve (Wilson-Genderson et al, 2018). This issue may be more relevant when samples are donated during a period of critical illness and risk of mortality may be high.…”

A mixed-methods examination of public attitudes toward vascularized composite allograft donation and transplantation

“…Specific concerns about VCA donation were also revealed. While bodily mutilation has been noted as a source of reluctance for solid organ and tissue donation, 21 , 33 – 36 respondents reacted more viscerally to the idea of the donor being “cut up,” evoking imagery from horror films. Participants further distinguished VCA donation from solid organ and tissue donation, stating the former is visibly obvious.…”

“…Incorporating VCA-related questions and concerns into future training for donation professionals is likely to create higher levels of comfort, confidence, and competence in their communication with FDM. 12,22,23,35,[55][56][57] Evidencebased training that provides suggested language and communication techniques for allaying families' concerns would ensure donation professionals are well equipped to obtain family authorization and support families' VCA donation decision-making process.…”