Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples

J Empir Res Hum Res Ethics. 2017 Apr;12(2):97-106. doi: 10.1177/1556264617697839.


Discussions about disclosing individual genetic research results include calls to consider participants' preferences. In this study, parents of Boston Children's Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 ( p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. Findings also suggest that preference-setting models that do not provide specific examples of results could underestimate participants' desires for information.

Keywords: biorepositories/biobanks; children and adolescent/pediatrics; genetic research; incidental findings/return of results; preferences.

Publication types

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

MeSH terms

  • Adult
  • Biological Specimen Banks*
  • Comprehension*
  • Disclosure*
  • Female
  • Genetic Predisposition to Disease
  • Genetic Research*
  • Genetic Testing*
  • Genomics
  • Hospitals
  • Humans
  • Male
  • Massachusetts
  • Middle Aged
  • Parents / psychology*
  • Patient Preference / psychology*
  • Patient Satisfaction