The disclosure of incidental genomic findings: An "ethically important moment" in pediatric research and practice

Martha Driessnack, Sandra Daack-Hirsch, Nancy Downing, Alyson Hanish, Lisa L. Shah, Mohammed Alasagheirin, Christian M. Simon, Janet K. Williams

Research output: Contribution to journalArticle

20 Scopus citations

Abstract

Although there are numerous position papers on the issues and challenges surrounding disclosure of incidental genomic findings involving children, there is very little research. To fill this gap, the purpose of this study was to explore the perspectives of multiple professional (N=103) and public (N=63) stakeholders using both interviews and focus groups. Using qualitative analysis, we identified one overarching theme, "It's hard for us; it's hard for them," and three subthemes/questions: "What to disclose?," "Who gets the information?," and "What happens later?" Perspectives differed between professional (Institutional Review Board chairs, clinicians, and researchers) and public stakeholders. While professionals focused on the complexities of what to disclose, the lay public stated that parents should have all information laid out for them. Professionals pondered multiple parent and child situations, while the public identified parents as informational gatekeepers who know their children best. Professionals described the potential requirement for follow-up over time as a logistical "nightmare," while the public believed that parents have the responsibility for managing their children's health information over time. However, the parent role as gatekeeper was seen as time limited and in need of professional support and backup. Our findings present a case for needed dialogue around what we propose as an "ethically important moment," with the goal of protecting and respecting the viewpoints of all stakeholders when policies regarding children are developed.

Original languageEnglish (US)
Pages (from-to)435-444
Number of pages10
JournalJournal of Community Genetics
Volume4
Issue number4
DOIs
StatePublished - Oct 1 2013

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Keywords

  • Children
  • Gatekeepers
  • Genomics
  • Incidental findings

ASJC Scopus subject areas

  • Epidemiology
  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

Cite this

Driessnack, M., Daack-Hirsch, S., Downing, N., Hanish, A., Shah, L. L., Alasagheirin, M., Simon, C. M., & Williams, J. K. (2013). The disclosure of incidental genomic findings: An "ethically important moment" in pediatric research and practice. Journal of Community Genetics, 4(4), 435-444. https://doi.org/10.1007/s12687-013-0145-1