The Development of a Preference-Setting Model for the Return of Individual Genomic Research Results

被引：20

作者：

Bacon, Phoebe L. ^{[1
]}

Harris, Erin D. ^{[2
]}

Ziniel, Sonja I. ^{[3
,4
]}

Savage, Sarah K. ^{[4
]}

Weitzman, Elissa R. ^{[3
,4
]}

Green, Robert C. ^{[3
,5
]}

Huntington, Noelle L. ^{[3
,4
]}

Holm, Ingrid A. ^{[3
,4
]}

机构：

[1] Johns Hopkins Univ, Sch Med, Baltimore, MD USA

[2] Northeastern Univ, Boston, MA 02115 USA

[3] Harvard Univ, Sch Med, Boston, MA USA

[4] Boston Childrens Hosp, Boston, MA 02115 USA

[5] Partners Personalized Med, Boston, MA USA

来源：

JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS | 2015年 / 10卷 / 02期

基金：

美国国家卫生研究院;

关键词：

pediatrics; genomic research; individual research results; participant preferences; biobank; return of results; cognitive interviews; qualitative research; MANAGING INCIDENTAL FINDINGS; GENETIC RISK-ASSESSMENT; ALZHEIMER-DISEASE; RECOMMENDATIONS; INFORMATION; UTILITY; PARTICIPANTS; DISCLOSURE; GUIDELINES; MEDICINE;

D O I：

10.1177/1556264615572092

中图分类号：

B82 [伦理学（道德学）];

学科分类号：

摘要：

Understanding participants' preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitive interviews of parents to explore how parents conceptualize the process of setting preferences and which disease characteristics they believe to be most important when deciding what results to receive on their child. Severity and preventability of a condition were highly influential in decision making and certain groups of research results were anticipated by participants to have negative psychological effects. These findings informed the development of an educational tool and preference-setting model that can be scaled for use in the return of IRR from large biobank studies.

引用

收藏

页码：107 / 120

页数：14

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