Authors: | Anderson, N.; Delavar, A.; Novetsky Friedman, D.; Joseph, V.; Mubdi, N.; Oeffinger, K. C.; Sklar, C. A.; Offit, K.; Matasar, M.; Raghunathan, N.; Antal, Z.; Straus, D.; Walsh, M.; Latham, A.; Tonorezos, E. S. |
Article Title: | Utilization of clinical genetic counseling among childhood and young adult cancer survivors in a registry trial |
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. © 2020, Springer-Verlag GmbH Germany, part of Springer Nature. |
Keywords: | adolescent; adult; child; leukemia; young adult; major clinical study; cancer risk; follow up; cancer susceptibility; breast cancer; retinoblastoma; childhood cancer; hodgkin disease; cancer survivor; health care utilization; infant; newborn; high risk population; genetic risk; genetic screening; patient referral; genetic testing; genetic counseling; hereditary nonpolyposis colorectal cancer; beckwith wiedemann syndrome; human; male; female; priority journal; article; young adult cancer |
Journal Title: | Journal of Community Genetics |
Volume: | 11 |
Issue: | 4 |
ISSN: | 1868-310X |
Publisher: | Springer |
Date Published: | 2020-10-01 |
Start Page: | 501 |
End Page: | 504 |
Language: | English |
DOI: | 10.1007/s12687-020-00478-0 |
PROVIDER: | scopus |
PMCID: | PMC7475134 |
PUBMED: | 32676930 |
DOI/URL: | |
Notes: | Article -- Export Date: 1 October 2020 -- Source: Scopus |