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

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

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

Nassim Anderson 1, Arash Delavar 1 2, Danielle Novetsky Friedman 1, Vijai Joseph 1, Nidha Mubdi 1, Kevin C Oeffinger 3, Charles A Sklar 1, Kenneth Offit 1 4, Matthew Matasar 1 4, Nirupa Raghunathan 1 4, Zoltan Antal 1, David Straus 1 4, Michael Walsh 1, Alicia Latham 1 4, Emily S Tonorezos 5 6 7

Affiliations 

• PMID: 32676930
 
• DOI: 10.1007/s12687-020-00478-0

Abstract

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.

Keywords: Cancer survivor; Childhood cancer; Genetic testing; Young adult cancer.

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