Utilization of clinical genetic counseling among childhood and young adult cancer survivors in a registry trial.


Journal Article

We describe utilization of clinical genetic services among survivors of childhood and young adult cancer after participation in a genetic registry. Clinical genetic counselors flagged 162 out of 1069 pedigrees (15.2%) as suggestive of inheritable cancer susceptibility, resulting in 126 (11.8%) referral letters. Following delivery of the referral letters, 19 (15.1%) participants completed clinical genetic counseling, 16 (12.7%) received testing, and four (3.2%) were found to have actionable results. Our results suggest a discordance between reported willingness to undergo genetic counseling and real-world utilization.

Full Text

Duke Authors

Cited Authors

  • Anderson, N; Delavar, A; Friedman, DN; Joseph, V; Mubdi, N; Oeffinger, KC; Sklar, CA; Offit, K; Matasar, M; Raghunathan, N; Antal, Z; Straus, D; Walsh, M; Latham, A; Tonorezos, ES

Published Date

  • October 2020

Published In

Volume / Issue

  • 11 / 4

Start / End Page

  • 501 - 504

PubMed ID

  • 32676930

Pubmed Central ID

  • 32676930

International Standard Serial Number (ISSN)

  • 1868-310X

Digital Object Identifier (DOI)

  • 10.1007/s12687-020-00478-0


  • eng

Conference Location

  • Germany