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The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.生物样本库捐赠者的道德考量:非福利利益对捐赠意愿的影响。
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Family decision maker perspectives on the return of genetic results in biobanking research.家庭决策者对生物样本库研究中基因检测结果反馈的看法。
Genet Med. 2016 Jan;18(1):82-8. doi: 10.1038/gim.2015.38. Epub 2015 Apr 9.

授权使用已故患者的组织进行遗传研究。

Authorization of tissues from deceased patients for genetic research.

机构信息

Siminoff Research Group, College of Public Health, Temple University, 1700 N. Broad Street, Suite 417, Philadelphia, PA, 19121, USA.

College of Public Health, Temple University, 1700 N. Broad Street, Suite 417, Philadelphia, PA, 19121, USA.

出版信息

Hum Genet. 2018 Jan;137(1):63-71. doi: 10.1007/s00439-017-1855-y. Epub 2017 Dec 4.

DOI:10.1007/s00439-017-1855-y
PMID:29204889
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7521139/
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.

摘要

从已故供体获取的组织为基因组研究提供了重要数据,而器官获取组织(OPO)在此过程中发挥着重要作用。为了了解那些为移植而捐献器官的家庭的决定以及关于向基因型组织表达项目(GTEx)捐献的决定,我们研究了家庭决策者(FDM)的捐献决定。通过电话采访了 413 个家庭。进行移植和研究请求的 OPO 工作人员完成了自我管理的调查;共获得了来自 99 个 OPO 工作人员的 309 份匹配调查。76.8%的家庭同意将 GTEx 项目纳入捐献范围。逻辑回归分析发现,FDM 同意 GTEx 捐献与支持促进生物库建设的政策(OR=1.35)、对医学研究的积极态度(OR=1.1)、对违反保密性的担忧较小(OR=1.54)、对组织捐献的舒适度(OR=1.24)和对实体器官捐献的事先授权(OR=3.17)相关。与 GTEx 捐献相关的 OPO 工作人员特征包括女性(OR=3.57)、白人(OR=4.97)、对医院工作人员在捐献中的作用感到舒适(OR=1.61)以及与家庭讨论的话题数量(OR=57.9)。供体类型、FDM 态度、OPO 工作人员的社会人口统计学特征、OPO 对 GTEx 授权过程的舒适度以及对研究特定问题的讨论强度与 GTEx 捐献决策显著相关。