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

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 conce...

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Bibliographic Details
Published in:Journal of empirical research on human research ethics 2015-04, Vol.10 (2), p.107-120
Main Authors: Bacon, Phoebe L., Harris, Erin D., Ziniel, Sonja I., Savage, Sarah K., Weitzman, Elissa R., Green, Robert C., Huntington, Noelle L., Holm, Ingrid A.
Format: Article
Language:English
Subjects:
Adult
Anxiety
Bioethics
Biological Specimen Banks
Child
Cognitive psychology
Comprehension
Concept Formation
Decision Making
Decision making models
Disclosure
Disclosure - ethics
Ethics, Research
Female
Genetic Predisposition to Disease
Genome
Genomics
Genomics - ethics
Humans
Informed Consent - ethics
Informed Consent - psychology
Male
Medical ethics
Methodological Tools
Middle Aged
Models, Psychological
Parents & parenting
Parents - psychology
Preferences
Uncertainty
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Summary: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.
ISSN:1556-2646
1556-2654
DOI:10.1177/1556264615572092