Communication Preferences for Genome Sequencing Results in Breast Cancer Patients
Abstract
Communication of whole genome sequencing (WGS) results to patients is a key ethical and psychosocial issue, but more work has focused on whether to communicate results than how. Young breast cancer patients (diagnosed at < 40 years) are a key population for early application of WGS to identify cancer susceptibility alleles and mutations affecting treatment response, particularly those with a strong family history of breast cancer who do not carry a known BRCA1/2 mutation. However, little is known about their communication preferences regarding the content and delivery of WGS results. Based on an integrated conceptual framework of risk information and processing, we will examine young breast cancer patients’ communication preferences for WGS results (i.e., content, delivery format, information source, timing) and factors that may affect these preferences (i.e., genetics-related beliefs, decision-making preferences, breast cancer recurrence worry, informational norms, health literacy). We will recruit all participants through the nationwide Young Women’s Breast Cancer Research Program, focusing on four subgroups: those with a strong breast cancer family history and no identified BRCA1/2 mutation; with no identified BRCA1/2 mutation and no or moderate family history;BRCA1/2 mutation and a strong family history; and a strong family history who have not received genetic testing.
The specific aims are to:
(1) investigate communication preferences for WGS results among young breast cancer patients; and
(2) administer a survey to young breast cancer patients in order to examine (A) factors affecting communication preferences for WGS results among young breast cancer patients with a strong family history of breast cancer and no identified BRCA1/2 mutation and (B) compare communication preferences for WGS results among subgroups of young breast cancer patients.
Website
Communication Preferences for Genome Sequencing Results in Breast Cancer Patients
Codebook
Communication Preference Codebook
Data Request
Request the data by completing a data request form (must download) and this Data Request Communication Preferences survey (upload the data request form to the survey). Data requests are reviewed monthly by the project PIs Drs. Kaphingst and Goodman. All request are subject to IRB approval.
- Kaphingst, Kimberly A; Ivanovich, Jennifer; Lyons, Sarah et al. (2018) Preferences for learning different types of genome sequencing results among young breast cancer patients: Role of psychological and clinical factors. Transl Behav Med 8:71-79
- Seo, Joann; Ivanovich, Jennifer; Goodman, Melody S et al. (2017) Information Topics of Greatest Interest for Return of Genome Sequencing Results among Women Diagnosed with Breast Cancer at a Young Age. J Genet Couns 26:511-521
- Elrick, Ashley; Ashida, Sato; Ivanovich, Jennifer et al. (2017) Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age. J Genet Couns 26:173-181
- Kaphingst, K A; Ivanovich, J; Biesecker, B B et al. (2016) Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age. Clin Genet 89:378-84