Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research
Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research
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DOI：
10.1177/1556264615599620
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发表时间：
2015-10-01
影响因子：
1.3
通讯作者：
Huntington, Noelle L.
中科院分区：
文献类型：
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作者：
Holm, Ingrid A.;Iles, Brittany R.;Huntington, Noelle L.
在基因组生物库研究中，个体研究结果回报（IRRs）与参与者偏好的感知效益尚不清楚。我们根据疾病的可预防性和严重程度开发了一个在线偏好设置工具，用于返回IRRs，其中包括精神疾病、发育障碍、儿童期发病的退行性疾病和成人发病的疾病的IRRs选择退出选项。患者家长
The perceived benefit of return of individual research results (IRRs) in accordance to participants' preferences in genomic biobank research is unclear. We developed an online preference-setting tool for return of IRRs based on the preventability and severity of a condition, which included an opt-out option for IRRs for mental illness, developmental disorders, childhood-onset degenerative conditions, and adult-onset conditions. Parents of patients