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Bradbury AR, Patrick-Miller L, Egleston BL, et al. Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer. JCO Precis Oncol. 2018;2doi: 10.1200/po.17.00250.
Bradbury, A. R., Patrick-Miller, L., Egleston, B. L., Maxwell, K. N., DiGiovanni, L., Brower, J., Fetzer, D., Bennett Gaieski, J., Brandt, A., McKenna, D., Long, J., Powers, J., Stopfer, J. E., Nathanson, K. L., & Domchek, S. M. (2018). Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer. JCO precision oncology, 2. https://doi.org/10.1200/po.17.00250
Bradbury, Angela R, et al. "Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer." JCO precision oncology vol. 2 (2018). doi: https://doi.org/10.1200/po.17.00250
Bradbury AR, Patrick-Miller L, Egleston BL, Maxwell KN, DiGiovanni L, Brower J, Fetzer D, Bennett Gaieski J, Brandt A, McKenna D, Long J, Powers J, Stopfer JE, Nathanson KL, Domchek SM. Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer. JCO Precis Oncol. 2018;2. doi: 10.1200/po.17.00250. Epub 2018 Apr 16. PMID: 32095738; PMCID: PMC7039346.
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JCO Precis Oncol. 2018;2. doi: 10.1200/po.17.00250. Epub 2018 Apr 16.

Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer.

JCO precision oncology

Angela R Bradbury, Linda Patrick-Miller, Brian L Egleston, Kara N Maxwell, Laura DiGiovanni, Jamie Brower, Dominique Fetzer, Jill Bennett Gaieski, Amanda Brandt, Danielle McKenna, Jessica Long, Jacquelyn Powers, Jill E Stopfer, Katherine L Nathanson, Susan M Domchek

Affiliations

  1. Angela R. Bradbury, Kara N. Maxwell, Laura DiGiovanni, Jamie Brower, Dominique Fetzer, Jill Bennett Gaieski, Amanda Brandt, Danielle McKenna, Jessica Long, Jacquelyn Powers, Jill E. Stopfer, Katherine L. Nathanson, and Susan M. Domchek, Perelman School of Medicine at the University of Pennsylvania; Brian L. Egleston, Fox Chase Cancer Center, Temple University Health System, Philadelphia, PA; and Linda Patrick-Miller, The University of Chicago, Chicago, IL.

PMID: 32095738 PMCID: PMC7039346 DOI: 10.1200/po.17.00250

Abstract

RESULTS: Four hundred two potential participants were contacted. One hundred ninety-four participants (48%) did not respond despite multiple attempts, and 85 participants (21%) actively or passively declined. One hundred seven participants (27%) elected for predisclosure counseling and were more likely to be younger, married, and white. Ninety percent of participants who had predisclosure counseling elected to receive their genetic research results, and 89% made an informed choice. Knowledge increased significantly after predisclosure counseling, and anxiety, intrusive cancer-specific distress, uncertainty, and depression declined significantly after receipt of results. General anxiety and intrusive cancer-specific distress declined significantly for both participants with a positive result and those with a negative result. Sixty-four percent of participants had clinical confirmation testing when recommended, including all participants with a mutation in a high-penetrance gene.

CONCLUSION: Uptake of genetic research results may be lower than anticipated by hypothetical reports and small select studies. Participants who elected to receive research results with genetic providers did not experience increases in distress or uncertainty, but not all patients return for confirmation testing.

Conflict of interest statement

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationsh

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