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Making a family decision to donate the brain for genomic research: lessons from the genotype-tissue expression project (GTEx)
Cell and Tissue Banking ( IF 1.4 ) Pub Date : 2021-01-02 , DOI: 10.1007/s10561-020-09890-9
Laura A Siminoff 1 , Deborah Mash 2 , Maureen Wilson-Genderson 3 , Heather M Gardiner 4 , Maghboeba Mosavel 5 , Laura Barker 3
Affiliation  

This study sheds light on the attitudes and circumstances that influence decisions by families to donate the brain of a deceased family member for research. This study, a part of the Genotype-Tissue Expression (GTEx) project, interviewed families of patients who had authorized organ and/or tissue donation for transplantation. A total of 384 family decision makers (FDMs) who decided to donate organs and/or tissues for transplantation were also asked to donate to GTEx. Of these, 297 families were asked to donate their loved one’s whole brain and 87 families responded to a hypothetical request for brain donation. The decision to donate the brain to GTEx, actually or hypothetically, was the major outcome measure. The majority of the FDMs would choose to donate the brain, 78%. Unwillingness to donate the brain was associated with four attitudes: (1) the FDM unwillingness to donate their own tissues for research (OR 1.91, 95% CI .67 to 2.96; p = .05), (2) concern with potential for-profit use of tissues (OR 2.12, 95% CI 1.2 to 3.7; p = .008), (3) reported squeamishness about tissue donation (OR 1.34, 95% CI 1.1 to 1.7; p = .006), and (4) belief that FDMs should have a say in how the donated tissues are used (OR 1.36, 95% CI 1.13 to 1.5; p = .01). Organ and tissue donors may present a plenteous source of brains for research. Family concerns about tissue use and collection should be addressed by requesters.



中文翻译:


家庭决定捐献大脑用于基因组研究:基因型组织表达项目 (GTEx) 的经验教训



这项研究揭示了影响家庭捐献已故家庭成员大脑用于研究的决定的态度和环境。这项研究是基因型组织表达 (GTEx) 项目的一部分,采访了已授权器官和/或组织捐赠用于移植的患者家属。共有 384 名决定捐献器官和/或组织进行移植的家庭决策者 (FDM) 也被要求向 GTEx 捐献。其中,297 个家庭被要求捐献其亲人的整个大脑,87 个家庭回应了假设的大脑捐献请求。无论实际上还是假设,将大脑捐赠给 GTEx 的决定是主要的结果衡量标准。大多数 FDM 会选择捐献大脑,占 78%。不愿意捐献大脑与四种态度相关:(1) FDM 不愿意捐献自己的组织用于研究(OR 1.91,95% CI .67 至 2.96; p = .05),(2) 担心潜在的-组织的利润使用(OR 2.12,95% CI 1.2 至 3.7; p = .008),(3) 据报道对组织捐赠感到不安(OR 1.34,95% CI 1.1 至 1.7; p = .006),以及 (4)相信 FDM 应该对如何使用捐赠的组织有发言权(OR 1.36,95% CI 1.13 至 1.5; p = 0.01)。器官和组织捐赠者可以为研究提供充足的大脑来源。请求者应解决家庭对组织使用和收集的担忧。

更新日期:2021-01-02
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