Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Jan 29;8(1):85-94.
doi: 10.1093/tbm/ibx010.

Patient communication of cancer genetic test results in a diverse population

Charité N Ricker  1 , Rachel B Koff  2 , Chenxu Qu  1 , Julie Culver  1 , Duveen Sturgeon  1 , Kerry E Kingham  2 , Katrina Lowstuter  1 , Nicolette M Chun  2 , Courtney Rowe-Teeter  2 , Alexandra Lebensohn  2 , Peter Levonian  2 , Katlyn Partynski  1 , Karlena Lara-Otero  2 , Christine Hong  1 , Iva M Petrovchich  2 , Meredith A Mills  2 , Anne-Renee Hartman  3 , Brian Allen  3 , Uri Ladabaum  2 , Kevin McDonnell  1 , James M Ford  2 , Stephen B Gruber  1 , Allison W Kurian  2 , Gregory E Idos  1
Affiliations

Patient communication of cancer genetic test results in a diverse population

Charité N Ricker et al. Transl Behav Med. .

Abstract

Research on the communication of genetic test results has focused predominately on non-Hispanic White (NHW) mutation-positive families with high-risk hereditary cancer conditions. Little is known about this process for racially and ethnically diverse individuals or for those with mutations in moderate risk genes. The communication behaviors of study participants who carry a gene mutation were analyzed 3 months after disclosure of genetic test results. Participants were queried about communication of their results, as part of a prospective study of multi-gene panel genetic testing. The responses of particpants who tested positive were analyzed by race/ethnicity and by level of cancer risk (high vs. moderate). Of the 216 mutation-positive study participants, 136 (63%) responded. Self-reported race/ethnicity was 46% NHW, 41% Hispanic, 10% Asian, and 2% Black. The majority (99.0%, n = 135) had shared their results with someone and 96% had told a family member (n = 130). Hispanic respondents were less likely to have told a healthcare provider about their results than NHW (29% vs. 68%, p < .0001). Asian respondents were less likely than NHW to encourage family members to undergo testing (OR = 0.1, p = .03); but Asian family members were more likely to undergo testing (OR = 8.0, p = .03). There were no differences in communication between those with a mutation in a high- or moderate-risk gene. Three months post genetic testing, communication of results was very high; 30% reported a family member underwent genetic testing. Further studies are needed to better understand the communication process in individuals from diverse racial/ethnic backgrounds.

Keywords: Family communication; Hereditary cancer; Multi-gene panels.

PubMed Disclaimer

References

    1. Easton DF, Ford D, Bishop DT. Breast and ovarian cancer incidence in BRCA1-mutation carriers. Breast Cancer Linkage Consortium. Am J Hum Genet. 1995;56(1):265–271. - PMC - PubMed
    1. Breast Cancer Linkage Consortium. Cancer risks in BRCA2 mutation carriers. J Natl Cancer Inst. 1999;91(15):1310–1316. - PubMed
    1. Malone KE, Begg CB, Haile RW et al. . Population-based study of the risk of second primary contralateral breast cancer associated with carrying a mutation in BRCA1 or BRCA2. J Clin Oncol. 2010;28(14):2404–2410. - PMC - PubMed
    1. Watson P, Vasen HFA, Mecklin JP et al. . The risk of extra-colonic, extra-endometrial cancer in the Lynch syndrome. Int J Cancer. 2008;123(2):444–449. - PMC - PubMed
    1. Hampel H, Stephens JA, Pukkala E et al. . Cancer risk in hereditary nonpolyposis colorectal cancer syndrome: Later age of onset. Gastroenterology. 2005;129(2):415–421. - PubMed

Publication types