Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

被引：4

作者：

Mitchell, Phoebe B. ^{[1
]}

Ziniel, Sonja I. ^{[3
,4
,5
]}

Savage, Sarah K. ^{[6
]}

Christensen, Kurt D. ^{[7
]}

Weitzman, Elissa R. ^{[7
,8
]}

Green, Robert C. ^{[7
,11
]}

Huntington, Noelle L. ^{[7
,9
]}

Mathews, Debra J. ^{[2
]}

Holm, Ingrid A. ^{[7
,10
]}

机构：

[1] Johns Hopkins Univ, Baltimore, MD USA

[2] Johns Hopkins Univ, Sch Med, Dept Pediat, Baltimore, MD 21205 USA

[3] Ctr Patient Safety & Qual Res, Boston, MA USA

[4] Univ Colorado, Pediat, Aurora, CO USA

[5] Childrens Hosp Colorado, Aurora, CO USA

[6] Facial Dysmorphol Anal Inc, Boston, MA USA

[7] Harvard Univ, Boston, MA 02115 USA

[8] Boston Childrens Hosp, Adolescent Young Adult Med & Informat, Boston, MA USA

[9] Boston Childrens Hosp, Boston, MA USA

[10] Boston Childrens Hosp, Boston, MA USA

[11] Brigham & Womens Hosp, Res Program Translat Genom & Hlth Outcomes G2P, 75 Francis St, Boston, MA 02115 USA

来源：

JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS | 2018年 / 13卷 / 02期

关键词：

biorepositories/biobanks; genetic research; return of results; bioethics; children and adolescent/pediatrics; GENETIC RISK-ASSESSMENT; GENOMIC RESEARCH; INCIDENTAL FINDINGS; ALZHEIMER-DISEASE; RETURN; PARTICIPANTS; COHORT; PREFERENCES; INFORMATION; ATTITUDES;

D O I：

10.1177/1556264617753483

中图分类号：

B82 [伦理学（道德学）];

学科分类号：

摘要：

The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents' preferences and intent to participate (ITP) in biobank research utilizing their child's genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences (p < .0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.

引用

页码：125 / 138

页数：14

共 22 条

[21] Too Much of a Good Thing: How Novelty Biases and Vocabulary Influence Known and Novel Referent Selection in 18-Month-Old Children and Associative Learning Models
Kucker, Sarah C.
McMurray, Bob
Samuelson, Larissa K.
COGNITIVE SCIENCE, 2018, 42 : 463 - 493
[22] Respect for autonomy. How much do patients want to know in order to make decisions?
Quadrelli, Silvia
Colt, Henri G.
Lyons, Gustavo
Cohen, Diana
MEDICINA-BUENOS AIRES, 2008, 68 (03) : 198 - 204

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