Abstract

Introduction: Many individuals who previously received negative genetic test results are eligible for updated testing. This study examined intention to communicate updated genetic test results to relatives in participants who previously received negative genetic test results. Methods: Women with a personal or family history of breast or ovarian cancer who tested negative for BRCA1/2 before 2013 were enrolled between April 2018 and October 2019. Proportions were calculated to assess intention to communicate updated genetic test results to living immediate family, extended family, and all family. Potential predictors of intentions from the theory of planned behavior (attitudes, subjective norms, perceived behavioral control) were assessed. The three outcomes were analyzed using generalized linear models with a quasi-binomial probability distribution. Results: 110 women completed the baseline assessment prior to updated testing. Participants intended to communicate genetic test results to 90% of immediate family, 51% of extended family, and 66% of all living relatives. Participants with higher subjective norms (aOR = 1.93, 95% CI: 1.08–3.57) had higher intentions to communicate genetic test results to extended family, while participants with more positive attitudes (aOR = 1.27, 95% CI: 1.01–1.60) had higher intentions to communicate to all family. Placing higher importance on genetic information was associated with higher intentions to communicate to immediate family (aOR = 1.40, 95% CI: 1.06–1.83). Lower subjective numeracy was associated with higher intentions to communicate to extended family (aOR = 0.50, 95% CI: 0.32–0.76). Conclusion: Attitudes and subjective norms were predictors of intention to communicate updated genetic information to at-risk biological relatives, and predictors may vary by degree of relationship.

© 2023 The Author(s). Published by S. Karger AG, Basel

References Laduca H, Stuenkel AJ, Dolinsky JS, Keiles S, Tandy S, Pesaran T, et al. Utilization of multigene panels in hereditary cancer predisposition testing: analysis of more than 2,000 patients. Genet Med. 2014;16(11):830–7. Lincoln SE, Kobayashi Y, Anderson MJ, Yang S, Desmond AJ, Mills MA, et al. A systematic comparison of traditional and multigene panel testing for hereditary breast and ovarian cancer genes in more than 1000 patients. J Mol Diagn. 2015;17(5):533–44. Daly MB, Pal T, Berry MP, Buys SS, Dickson P, Domchek SM, et al. Genetic/familial high-risk assessment: breast, ovarian, and pancreatic, version 2.2021, NCCN clinical practice guidelines in oncology. J Natl Compr Cancer Netw. 2021;19(1):77–102. McGivern B, Everett J, Yager GG, Baumiller RC, Hafertepen A, Saal HM. Family communication about positive BRCA1 and BRCA2 genetic test results. Genet Med. 2004;6(6):503–9. Finlay E, Stopfer JE, Burlingame E, Evans KG, Nathanson KL, Weber BL, et al. Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test. 2008;12(1):81–91. Healey E, Taylor N, Greening S, Wakefield CE, Warwick L, Williams R, et al. Quantifying family dissemination and identifying barriers to communication of risk information in Australian BRCA families. Genet Med. 2017;19(12):1323–31. Lieberman S, Lahad A, Tomer A, Koka S, BenUziyahu M, Raz A, et al. Familial communication and cascade testing among relatives of BRCA population screening participants. Genet Med. 2018;20(11):1446–54. Petersen J, Koptiuch C, Wu YP, Mooney R, Elrick A, Szczotka K, et al. Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis. Patient Educ Couns. 2018;101(11):2011–7. Alegre N, Perre PV, Bignon YJ, Michel A, Galibert V, Mophawe O, et al. Psychosocial and clinical factors of probands impacting intrafamilial disclosure and uptake of genetic testing among families with BRCA1/2 or MMR gene mutations. Psychooncology. 2019;28(8):1679–86. Cragun D, Weidner A, Tezak A, Clouse K, Pal T. Family communication of genetic test results among women with inherited breast cancer genes. J Genet Couns. 2021;30(3):701–9. Lee DSC, Meiser B, Mariapun S, Hassan T, Yip CH, Mohd Taib NA, et al. Communication about positive BRCA1 and BRCA2 genetic test results and uptake of testing in relatives in a diverse Asian setting. J Genet Couns. 2021;30(3):720–9. Conley CC, Ketcher D, Reblin M, Kasting ML, Cragun D, Kim J, et al. The big reveal: family disclosure patterns of BRCA genetic test results among young black women with invasive breast cancer. J Genet Couns. 2020;29(3):410–22. Lafrenière D, Bouchard K, Godard B, Simard J, Dorval M. Family communication following BRCA1/2 genetic testing: a close look at the process. J Genet Couns. 2013;22(3):323–35. Pollard S, Kalloger S, Weymann D, Sun S, Nuk J, Schrader KA, et al. Genetic testing for hereditary cancer syndromes: patient recommendations for improved risk communication. Health Expect. 2020;23(4):884–92. di Pietro ML, Zaçe D, Orfino A, di Raimo FR, Poscia A, de Matteis E, et al. Intrafamilial communication of hereditary breast and ovarian cancer genetic information in Italian women: towards a personalised approach. Eur J Hum Genet. 2021;29(2):250–61. Young AL, Butow PN, Tucker KM, Wakefield CE, Healey E, Williams R. Challenges and strategies proposed by genetic health professionals to assist with family communication. Eur J Hum Genet. 2019;27(11):1630–8. Taber JM, Chang CQ, Lam TK, Gillanders EM, Hamilton JG, Schully SD. Prevalence and correlates of receiving and sharing high-penetrance cancer genetic test results: findings from the health information national trends survey. Public Health Genomics. 2015;18(2):67–77. Elrick A, Ashida S, Ivanovich J, Lyons S, Biesecker BB, Goodman MS, et al. 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. 2017;26(1):173–81. Barnard P, Sharples S, Thomson BJ, Garibaldi JM. Young adults’ attitudes to sharing whole-genome sequencing information: a university-based survey. BMC Med Genomics. 2019;12(1):55. Li ST, Sun S, Lie D, Met-Domestici M, Courtney E, Menon S, et al. Factors influencing the decision to share cancer genetic results among family members: an in-depth interview study of women in an Asian setting. Psychooncology. 2018;27(3):998–1004. Ajzen I. Understanding attitudes and predicting social behavior, Englewood Cliffs. J Personal Soc Psychol. 1992;98–109. Ajzen I. Perceived behavioral control, self-efficacy, locus of control, and the theory of planned behavior. J Appl Soc Psychol. 2002;32(4):665–83. Ajzen II, Chen L, Yang X, da Cruz L, Suprapti NWS, Yasa NNK, et al. Attitudes. personality & behavior Insan Media Psikologi. 2005. Barsevick AM, Montgomery SV, Ruth K, Ross EA, Egleston BL, Bingler R, et al. Intention to communicate BRCA1/BRCA2 genetic test results to the family. J Fam Psychol. 2008;22(2):303–12. Montgomery SV, Barsevick AM, Egleston BL, Bingler R, Ruth K, Miller SM, et al. Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial. Fam Cancer. 2013;12(3):537–46. Hesse-Biber S, Dwyer AA, Yi S. Parent of origin differences in psychosocial burden and approach to BRCA risk management. Breast J. 2020;26(4):734–8. Reid AE, Ferrer RA, Kadirvel S, Biesecker BB, Lewis KL, Biesecker LG, et al. Roles of attitudes and injunctive norms in decisional conflict and disclosure following receipt of genome sequencing results. Soc Sci Med. 2020;262:113147. Wiens ME, Wilson BJ, Honeywell C, Etchegary H. A family genetic risk communication framework: guiding tool development in genetics health services. J Community Genet. 2013;4(2):233–42. Mooney R, Espinel W, Elrick A, Kehoe K, Kohlmann W, Kaphingst KA. Uptake of genetic counseling and multi-gene panel testing among women in the intermountain West with previous negative BRCA1 and BRCA2 results contacted for updated testing. J Genet Couns. 2022;31(2):470–8. Ashida S, Goodman MS, Stafford J, Lachance C, Kaphingst KA. Perceived familiarity with and importance of family health history among a medically underserved population. J Community Genet. 2012;3(4):285–95. Hay J, Kaphingst KA, Baser R, Li Y, Hensley-Alford S, McBride CM. Skin cancer concerns and genetic risk information-seeking in primary care. Public Health Genomics. 2012;15(2):57–72. Miller IW, Epstein NB, Bishop DS, Keitner GI. The Mcmaster family assessment device: reliability and validity. J Marital Fam Ther. 1985;11(4):345–56. Epstein NB, Baldwin LM, Bishop DS. The Mcmaster family assessment device. J Marital Fam Ther. 1983;9(2):171–80. Byles J, Byrne C, Boyle MH, Offord DR. Ontario child health study: reliability and validity of the general functioning subscale of the McMaster family assessment device. Fam Process. 1988;27(1):97–104. Gotay CC, Pagano IS. Assessment of Survivor Concerns (ASC): a newly proposed brief questionnaire. Health Qual Life Outcomes. 2007;5:15. Biesecker LG, Mullikin JC, Facio FM, Turner C, Cherukuri PF, Blakesley RW, et al. The ClinSeq Project: piloting large-scale genome sequencing for research in genomic medicine. Genome Res. 2009;19(9):1665–74. McBride CM, Alford SH, Reid RJ, Larson EB, Baxevanis AD, Brody LC. Characteristics of users of online personalized genomic risk assessments: implications for physician-patient interactions. Genet Med. 2009;11(8):582–7. Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Measuring numeracy without a math test: development of the subjective numeracy scale. Med Decis Making. 2007;27(5):672–80. Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Validation of the subjective numeracy scale: effects of low numeracy on comprehension of risk communications and utility elicitations. Med Decis Making. 2007;27(5):663–71. Bolker B, R Development Core Team. Bbmle: tools for general maximum likelihood estimation. 2020. R package version 1.0.23. Collett D. Modelling survival data in medical research. 3rd ed. Boca Raton, US: CRC Press; 2015. Fehniger J, Lin F, Beattie MS, Joseph G, Kaplan C. Family communication of BRCA1/2 results and family uptake of BRCA1/2 testing in a diverse population of BRCA1/2 carriers. J Genet Couns. 2013;22(5):603–12. Dean M, Tezak AL, Johnson S, Pierce JK, Weidner A, Clouse K, et al. Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers. Patient Educ Couns. 2021;104(4):720–5. Albrechtsen RD, Goodman MS, Bather JR, Kaphingst KA. Impact of numeracy preferences on information needs for genome sequencing results. Patient Educ Couns. 2021;104(3):467–72. Kaphingst KA, Ivanovich J, Lyons S, Biesecker B, Dresser R, Elrick A, et al. Preferences for learning different types of genome sequencing results among young breast cancer patients: role of psychological and clinical factors. Transl Behav Med. 2018;8(1):71–9. Hanoch Y, Miron-Shatz T, Rolison JJ, Ozanne E. Understanding of BRCA1/2 genetic tests results: the importance of objective and subjective numeracy. Psychooncology. 2014;23(10):1142–8. Fagerlin A, Zikmund-Fisher BJ, Ubel PA. Helping patients decide: ten steps to better risk communication. J Natl Cancer Inst. 2011;103(19):1436–43. McBride CM, Koehly LM, Sanderson SC, Kaphingst KA. The behavioral response to personalized genetic information: will genetic risk profiles motivate individuals and families to choose more healthful behaviors? Annual Review of Public Health. 2010;103:89–103. Article / Publication Details

First-Page Preview

Received: March 03, 2022
Accepted: November 28, 2022
Published online: January 14, 2023

Number of Print Pages: 11
Number of Figures: 0
Number of Tables: 4

ISSN: 1662-4246 (Print)
eISSN: 1662-8063 (Online)

For additional information: https://www.karger.com/PHG

Tables