Open AccessUtilization of clinical genetic counseling among childhood and young adult cancer survivors in a registry trial
Author(s) -
Nassim Anderson,
Arash Ghorbannia Delavar,
Danielle Novetsky Friedman,
Joseph Vijai,
Nidha Z. Mubdi,
Kevin C. Oeffinger,
Charles A. Sklar,
Kenneth Offit,
Matthew J. Matasar,
Nirupa Jaya Raghunathan,
Zoltan Antal,
David J. Straus,
Michael F. Walsh,
Alicia Latham,
Emily S. Tonorezos
Publication year - 2020
Publication title -
journal of community genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.774
H-Index - 27
eISSN - 1868-6001
pISSN - 1868-310X
DOI - 10.1007/s12687-020-00478-0
Subject(s) - referral , genetic counseling , pedigree chart , medicine , public health , clinical trial , cancer registry , childhood cancer , family medicine , genetic testing , young adult , epidemiology , cancer , pediatrics , gerontology , nursing , genetics , biology , gene
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.