The development of a preference-setting model for the return of individual genomic research results

J Empir Res Hum Res Ethics. 2015 Apr;10(2):107-20. doi: 10.1177/1556264615572092. Epub 2015 Feb 20.


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.

Keywords: biobank; cognitive interviews; genomic research; individual research results; participant preferences; pediatrics; qualitative research; return of results.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Anxiety
  • Biological Specimen Banks*
  • Child
  • Comprehension
  • Concept Formation
  • Decision Making*
  • Disclosure* / ethics
  • Ethics, Research
  • Female
  • Genetic Predisposition to Disease*
  • Genome
  • Genomics* / ethics
  • Humans
  • Informed Consent* / ethics
  • Informed Consent* / psychology
  • Male
  • Middle Aged
  • Models, Psychological
  • Parents* / psychology
  • Uncertainty