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Authorization of tissues from deceased patients for genetic research.
- 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.
- Subjects :
- Adult
Aged
Biological Specimen Banks legislation & jurisprudence
Biomedical Research ethics
Biomedical Research legislation & jurisprudence
Decision Making ethics
Female
Genetic Research legislation & jurisprudence
Health Knowledge, Attitudes, Practice
Humans
Male
Middle Aged
Socioeconomic Factors
Tissue Donors psychology
Tissue and Organ Procurement legislation & jurisprudence
Biological Specimen Banks ethics
Genetic Research ethics
Tissue and Organ Procurement ethics
Subjects
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