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

Journal of Community Genetics volume 11, pages501–504(2020)Cite this article

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.

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Funding

This work was supported by the National Cancer Institute (P30CA008748 and R25CA020449) and the Meg Berté Owen Fund. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Affiliations

  1. Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Nassim Anderson, Arash Delavar, Danielle Novetsky Friedman, Vijai Joseph, Nidha Mubdi, Charles A. Sklar, Kenneth Offit, Matthew Matasar, Nirupa Raghunathan, Zoltan Antal, David Straus, Michael Walsh, Alicia Latham & Emily S. Tonorezos

  2. School of Medicine, University of California San Diego, La Jolla, CA, USA

    Arash Delavar

  3. Duke Cancer Center, Duke University, Durham, NC, USA

    Kevin C. Oeffinger

  4. Weill Cornell Medical College, New York, NY, USA

    Kenneth Offit, Matthew Matasar, Nirupa Raghunathan, David Straus, Alicia Latham & Emily S. Tonorezos

  5. Adult Long-Term Follow-Up Program, Memorial Sloan Kettering, 485 Lexington Avenue, 2nd Floor, New York, NY, 10017, USA

    Emily S. Tonorezos

Authors
  1. Nassim Anderson
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  2. Arash Delavar
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  3. Danielle Novetsky Friedman
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  4. Vijai Joseph
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  5. Nidha Mubdi
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  6. Kevin C. Oeffinger
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  7. Charles A. Sklar
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  8. Kenneth Offit
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  9. Matthew Matasar
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  10. Nirupa Raghunathan
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  11. Zoltan Antal
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  12. David Straus
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  13. Michael Walsh
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  14. Alicia Latham
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  15. Emily S. Tonorezos
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Corresponding author

Correspondence to Emily S. Tonorezos.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

We received Institutional Review Board approval from the Memorial Sloan Kettering Cancer Center (MSKCC) to create a genetic registry for survivors of childhood and young adult cancer. Our study is in accordance with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Anderson, N., Delavar, A., Friedman, D.N. et al. Utilization of clinical genetic counseling among childhood and young adult cancer survivors in a registry trial. J Community Genet 11, 501–504 (2020). https://doi.org/10.1007/s12687-020-00478-0

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Keywords

  • Genetic testing
  • Childhood cancer
  • Young adult cancer
  • Cancer survivor