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Authorization of tissues from deceased patients for genetic research.

Authors :
Wilson-Genderson M
Barker KL
Gardiner HM
Mosavel M
Thomas J
Siminoff LA
Source :
Human genetics [Hum Genet] 2018 Jan; Vol. 137 (1), pp. 63-71. Date of Electronic Publication: 2017 Dec 04.
Publication Year :
2018

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.

Details

Language :
English
ISSN :
1432-1203
Volume :
137
Issue :
1
Database :
MEDLINE
Journal :
Human genetics
Publication Type :
Academic Journal
Accession number :
29204889
Full Text :
https://doi.org/10.1007/s00439-017-1855-y