Skip to main content
Top
Published in: Journal of Genetic Counseling 3/2016

01-06-2016 | Original Research

Impact of Genetic Counseling and Testing on Altruistic Motivations to Test for BRCA1/2: a Longitudinal Study

Authors: Rahul Garg, Joseph Vogelgesang, Kimberly Kelly

Published in: Journal of Genetic Counseling | Issue 3/2016

Login to get access

Abstract

Despite the importance of altruism in an individual’s participation in genetic counseling and testing, little research has explored the change in altruistic motivations to test over time. This study analyzed altruistic motivations to test and change in altruistic motivations after genetic counseling and testing among individuals (N = 120) at elevated risk for BRCA1/2 mutations. The perceived benefits of genetic testing were assessed and utilized in a mixed-methods, repeated measures design at three time points: pre-counseling, counseling and post-genetic testing, along with transcripts of genetic counseling sessions. Qualitative analysis using an immersion/crystallization method resulted in six common perceived benefits of testing: cancer prevention, awareness, family’s survival, relief from anxiety, for science, and future planning. Perceived benefits were then coded into three categories according to Hamilton’s kin selection theory: altruistic motivation, personal motivation, and motivation for mutual benefit. At pre-counseling, those with a personal cancer history (p = 0.003) and those with one or more children (p = 0.013), were significantly more likely to cite altruistic motivations to test. Altruistic motivations significantly increased post-counseling (p = 0.01) but declined post-testing (p < 0.001). Labov’s narrative analysis further elucidated the context of altruistic and personal motivations. The possibility of a positive test result might have led those with personal history of cancer to have altruistic motivations for testing. Genetic counseling may have increased altruistic motivations to help family and may be a prime opportunity to discuss other forms of altruism.
Literature
go back to reference Berry, D. A., Parmigiani, G., Sanchez, J., Schildkraut, J., & Winer, E. (1997). Probability of carrying a mutation of breast-ovarian cancer gene BRCA1 based on family history. Journal of the National Cancer Institute, 89(3), 227–238.CrossRefPubMed Berry, D. A., Parmigiani, G., Sanchez, J., Schildkraut, J., & Winer, E. (1997). Probability of carrying a mutation of breast-ovarian cancer gene BRCA1 based on family history. Journal of the National Cancer Institute, 89(3), 227–238.CrossRefPubMed
go back to reference Borkan, J. (1999). Immersion/crystallization. In B. F. Crabtree, & W. L. Miller (Eds.), Doing qualitative research (2nd ed., pp. 179–194). Thousand Oaks: Sage. Borkan, J. (1999). Immersion/crystallization. In B. F. Crabtree, & W. L. Miller (Eds.), Doing qualitative research (2nd ed., pp. 179–194). Thousand Oaks: Sage.
go back to reference Boudreault, P., Baldwin, E. E., Fox, M., Dutton, L., Tullis, L., Linden, J., & Palmer, C. G. (2010). Deaf adults' reasons for genetic testing depend on cultural affiliation: Results from a prospective, longitudinal genetic counseling and testing study. Journal of Deaf Studies and Deaf Education, 15(3), 209–227.CrossRefPubMedPubMedCentral Boudreault, P., Baldwin, E. E., Fox, M., Dutton, L., Tullis, L., Linden, J., & Palmer, C. G. (2010). Deaf adults' reasons for genetic testing depend on cultural affiliation: Results from a prospective, longitudinal genetic counseling and testing study. Journal of Deaf Studies and Deaf Education, 15(3), 209–227.CrossRefPubMedPubMedCentral
go back to reference Brandt, R., Hartmann, E., Ali, Z., Tucci, R., & Gilman, P. (2002). Motivations and concerns of women considering genetic testing for breast cancer: A comparison between affected and at-risk probands. Genetic Testing, 6(3), 203–205.CrossRefPubMed Brandt, R., Hartmann, E., Ali, Z., Tucci, R., & Gilman, P. (2002). Motivations and concerns of women considering genetic testing for breast cancer: A comparison between affected and at-risk probands. Genetic Testing, 6(3), 203–205.CrossRefPubMed
go back to reference Chen, S., & Parmigiani, G. (2007). Meta-analysis of BRCA1 and BRCA2 penetrance. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 25(11), 1329–1333.CrossRef Chen, S., & Parmigiani, G. (2007). Meta-analysis of BRCA1 and BRCA2 penetrance. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 25(11), 1329–1333.CrossRef
go back to reference Claes, E., Denayer, L., Evers-Kiebooms, G., Boogaerts, A., & Legius, E. (2004). Predictive testing for hereditary non-polyposis colorectal cancer: Motivation, illness representations and short-term psychological impact. Patient Education and Counseling, 55(2), 265–274.CrossRefPubMed Claes, E., Denayer, L., Evers-Kiebooms, G., Boogaerts, A., & Legius, E. (2004). Predictive testing for hereditary non-polyposis colorectal cancer: Motivation, illness representations and short-term psychological impact. Patient Education and Counseling, 55(2), 265–274.CrossRefPubMed
go back to reference Collins, F. S., & Varmus, H. (2015). A new initiative on precision medicine. New England Journal of Medicine, 372(9), 793–795.CrossRefPubMed Collins, F. S., & Varmus, H. (2015). A new initiative on precision medicine. New England Journal of Medicine, 372(9), 793–795.CrossRefPubMed
go back to reference Coyne, I. T. (1997). Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? Journal of Advanced Nursing, 26(3), 623–630.CrossRefPubMed Coyne, I. T. (1997). Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? Journal of Advanced Nursing, 26(3), 623–630.CrossRefPubMed
go back to reference d’Agincourt-Canning, L. (2006). Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice. Qualitative Health Research, 16(1), 97–118.CrossRefPubMed d’Agincourt-Canning, L. (2006). Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice. Qualitative Health Research, 16(1), 97–118.CrossRefPubMed
go back to reference Durfy, S. J., Bowen, D. J., McTiernan, A., Sporleder, J., & Burke, W. (1999). Attitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington. Cancer Epidemiology, Biomarkers & Prevention: A Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology, 8(4), 369–375. Durfy, S. J., Bowen, D. J., McTiernan, A., Sporleder, J., & Burke, W. (1999). Attitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington. Cancer Epidemiology, Biomarkers & Prevention: A Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology, 8(4), 369–375.
go back to reference Erskine, K. E., Hidayatallah, N. Z., Walsh, C. A., McDonald, T. V., Cohen, L., Marion, R. W., & Dolan, S. M. (2014). Motivation to pursue genetic testing in individuals with a personal or family history of cardiac events or sudden cardiac death. Journal of Genetic Counseling, 23(5), 849–859.CrossRefPubMedPubMedCentral Erskine, K. E., Hidayatallah, N. Z., Walsh, C. A., McDonald, T. V., Cohen, L., Marion, R. W., & Dolan, S. M. (2014). Motivation to pursue genetic testing in individuals with a personal or family history of cardiac events or sudden cardiac death. Journal of Genetic Counseling, 23(5), 849–859.CrossRefPubMedPubMedCentral
go back to reference Esplen, M. J., Madlensky, L., Butler, K., McKinnon, W., Bapat, B., Wong, J., & Gallinger, S. (2001). Motivations and psychosocial impact of genetic testing for HNPCC. American Journal of Medical Genetics, 103(1), 9–15.CrossRefPubMed Esplen, M. J., Madlensky, L., Butler, K., McKinnon, W., Bapat, B., Wong, J., & Gallinger, S. (2001). Motivations and psychosocial impact of genetic testing for HNPCC. American Journal of Medical Genetics, 103(1), 9–15.CrossRefPubMed
go back to reference Euhus, D. M., Smith, K. C., Robinson, L., Stucky, A., Olopade, O. I., Cummings, S., et al. (2002). Pretest prediction of BRCA1 or BRCA2 mutation by risk counselors and the computer model BRCAPRO. Journal of the National Cancer Institute, 94(11), 844–851.CrossRefPubMed Euhus, D. M., Smith, K. C., Robinson, L., Stucky, A., Olopade, O. I., Cummings, S., et al. (2002). Pretest prediction of BRCA1 or BRCA2 mutation by risk counselors and the computer model BRCAPRO. Journal of the National Cancer Institute, 94(11), 844–851.CrossRefPubMed
go back to reference Foster, K. R., Wenseleers, T., & Ratnieks, F. L. W. (2006). Kin selection is the key to altruism. Trends in Ecology & Evolution, 21(2), 57–60.CrossRef Foster, K. R., Wenseleers, T., & Ratnieks, F. L. W. (2006). Kin selection is the key to altruism. Trends in Ecology & Evolution, 21(2), 57–60.CrossRef
go back to reference Geller, G., Doksum, T., Bernhardt, B. A., & Metz, S. A. (1999). Participation in breast cancer susceptibility testing protocols: Influence of recruitment source, altruism, and family involvement on women’s decisions. Cancer Epidemiology, Biomarkers & Prevention: A Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology, 8(4), 377–383. Geller, G., Doksum, T., Bernhardt, B. A., & Metz, S. A. (1999). Participation in breast cancer susceptibility testing protocols: Influence of recruitment source, altruism, and family involvement on women’s decisions. Cancer Epidemiology, Biomarkers & Prevention: A Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology, 8(4), 377–383.
go back to reference Hallowell, N., Cooke, S., Crawford, G., Lucassen, A., Parker, M., & Snowdon, C. (2010). An investigation of patients' motivations for their participation in genetics-related research. Journal of Medical Ethics, 36(1), 37–45. doi:10.1136/jme.2009.029264.CrossRefPubMed Hallowell, N., Cooke, S., Crawford, G., Lucassen, A., Parker, M., & Snowdon, C. (2010). An investigation of patients' motivations for their participation in genetics-related research. Journal of Medical Ethics, 36(1), 37–45. doi:10.​1136/​jme.​2009.​029264.CrossRefPubMed
go back to reference Hesse-Biber, S. N. (2010). Mixed methods research: Merging theory with practice. New York: Guilford Press. Hesse-Biber, S. N. (2010). Mixed methods research: Merging theory with practice. New York: Guilford Press.
go back to reference Howlader, N., Noone, A. M., Krapcho, M., Garshell, J., Miller, D., Altekruse, S. F.,... Cronin, K. A. (2015) SEER Cancer Statistics Review, 1975-2012, National cancer institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2012/, based on November 2014 SEER data submission, posted to the SEER web site. Howlader, N., Noone, A. M., Krapcho, M., Garshell, J., Miller, D., Altekruse, S. F.,... Cronin, K. A. (2015) SEER Cancer Statistics Review, 1975-2012, National cancer institute. Bethesda, MD, http://​seer.​cancer.​gov/​csr/​1975_​2012/​, based on November 2014 SEER data submission, posted to the SEER web site.
go back to reference Isaacs, C., Peshkin, B. N., Schwartz, M., Demarco, T. A., Main, D., & Lerman, C. (2002). Breast and ovarian cancer screening practices in healthy women with a strong family history of breast or ovarian cancer. Breast Cancer Research and Treatment, 71(2), 103–112.CrossRefPubMed Isaacs, C., Peshkin, B. N., Schwartz, M., Demarco, T. A., Main, D., & Lerman, C. (2002). Breast and ovarian cancer screening practices in healthy women with a strong family history of breast or ovarian cancer. Breast Cancer Research and Treatment, 71(2), 103–112.CrossRefPubMed
go back to reference Kelly, K. M., Ellington, L., Schoenberg, N., Jackson, T., Dickinson, S., Porter, K., et al. (2014). Genetic counseling content: How does it impact behavior? Journal of Behavioral Medicine, 1-11. Kelly, K. M., Ellington, L., Schoenberg, N., Jackson, T., Dickinson, S., Porter, K., et al. (2014). Genetic counseling content: How does it impact behavior? Journal of Behavioral Medicine, 1-11.
go back to reference Kirchhoff, T., Kauff, N. D., Mitra, N., Nafa, K., Huang, H., Palmer, C., & Offit, K. (2004). BRCA mutations and risk of prostate cancer in Ashkenazi Jews. Clinical Cancer Research: An Official Journal of the American Association for Cancer Research, 10(9), 2918–2921.CrossRef Kirchhoff, T., Kauff, N. D., Mitra, N., Nafa, K., Huang, H., Palmer, C., & Offit, K. (2004). BRCA mutations and risk of prostate cancer in Ashkenazi Jews. Clinical Cancer Research: An Official Journal of the American Association for Cancer Research, 10(9), 2918–2921.CrossRef
go back to reference Labov, W. (2003). Uncovering the event structure of narrative. Georgetown University Round Table, 63–83. Labov, W. (2003). Uncovering the event structure of narrative. Georgetown University Round Table, 63–83.
go back to reference Labov, W., & Waletzky, J. (1997). Narrative analysis: Oral versions of personal experience. Journal of Narrative & Life History, 7(1–4), 3–38.CrossRef Labov, W., & Waletzky, J. (1997). Narrative analysis: Oral versions of personal experience. Journal of Narrative & Life History, 7(1–4), 3–38.CrossRef
go back to reference Lehmann, L. S., Weeks, J. C., Klar, N., & Garber, J. E. (2002). A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 4(5), 346–352.CrossRef Lehmann, L. S., Weeks, J. C., Klar, N., & Garber, J. E. (2002). A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 4(5), 346–352.CrossRef
go back to reference McDonnell, S. K., Schaid, D. J., Myers, J. L., Grant, C. S., Donohue, J. H., Woods, J. E., & Hartmann, L. C. (2001). Efficacy of contralateral prophylactic mastectomy in women with a personal and family history of breast cancer. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 19(19), 3938–3943. McDonnell, S. K., Schaid, D. J., Myers, J. L., Grant, C. S., Donohue, J. H., Woods, J. E., & Hartmann, L. C. (2001). Efficacy of contralateral prophylactic mastectomy in women with a personal and family history of breast cancer. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 19(19), 3938–3943.
go back to reference National Society of Genetic Counselors. (2004) Familial cancer risk counseling: standard protocol, Retrieved 12/5/2008, from www.nsgc.org. National Society of Genetic Counselors. (2004) Familial cancer risk counseling: standard protocol, Retrieved 12/5/2008, from www.​nsgc.​org.
go back to reference Nowak, M. A., & Sigmund, K. (1998). Evolution of indirect reciprocity by image scoring. Nature, 393(6685), 573–577.CrossRefPubMed Nowak, M. A., & Sigmund, K. (1998). Evolution of indirect reciprocity by image scoring. Nature, 393(6685), 573–577.CrossRefPubMed
go back to reference Phillips, K. A., Warner, E., Meschino, W. S., Hunter, J., Abdolell, M., Glendon, G., & Goodwin, P. J. (2000). Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2. Clinical Genetics, 57(5), 376–383.CrossRefPubMed Phillips, K. A., Warner, E., Meschino, W. S., Hunter, J., Abdolell, M., Glendon, G., & Goodwin, P. J. (2000). Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2. Clinical Genetics, 57(5), 376–383.CrossRefPubMed
go back to reference Riley, B. D., Culver, J. O., Skrzynia, C., Senter, L. A., Peters, J. A., Costalas, J. W., & Trepanier, A. M. (2012). Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 21(2), 151–161. doi:10.1007/s10897-011-9462-x.CrossRefPubMed Riley, B. D., Culver, J. O., Skrzynia, C., Senter, L. A., Peters, J. A., Costalas, J. W., & Trepanier, A. M. (2012). Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 21(2), 151–161. doi:10.​1007/​s10897-011-9462-x.CrossRefPubMed
go back to reference Roberts, J. S., LaRusse, S. A., Katzen, H., Whitehouse, P. J., Barber, M., Post, S. G., & Green, R. C. (2003). Reasons for seeking genetic susceptibility testing among first-degree relatives of people with Alzheimer disease. Alzheimer disease and Associated Disorders, 17(2), 86–93.CrossRefPubMed Roberts, J. S., LaRusse, S. A., Katzen, H., Whitehouse, P. J., Barber, M., Post, S. G., & Green, R. C. (2003). Reasons for seeking genetic susceptibility testing among first-degree relatives of people with Alzheimer disease. Alzheimer disease and Associated Disorders, 17(2), 86–93.CrossRefPubMed
go back to reference Smith, J. E. (2014). Hamilton’s legacy: kinship, cooperation and social tolerance in mammalian groups. Animal Behaviour, 92, 291–304.CrossRef Smith, J. E. (2014). Hamilton’s legacy: kinship, cooperation and social tolerance in mammalian groups. Animal Behaviour, 92, 291–304.CrossRef
go back to reference Stubbs, M. (1983). Discourse analysis: The sociolinguistic analysis of natural language University of Chicago Press. Stubbs, M. (1983). Discourse analysis: The sociolinguistic analysis of natural language University of Chicago Press.
go back to reference Trivers, R. L. (1971). The evolution of reciprocal altruism. The Quarterly Review of Biology, 46(1), 35–57.CrossRef Trivers, R. L. (1971). The evolution of reciprocal altruism. The Quarterly Review of Biology, 46(1), 35–57.CrossRef
go back to reference Walker, R. S., & Bailey, D. H. (2014). Marrying kin in small-scale societies. American Journal of Human Biology, 26(3), 384–388.CrossRefPubMed Walker, R. S., & Bailey, D. H. (2014). Marrying kin in small-scale societies. American Journal of Human Biology, 26(3), 384–388.CrossRefPubMed
go back to reference West, S. A., Griffin, A. S., & Gardner, A. (2007). Social semantics: altruism, cooperation, mutualism, strong reciprocity and group selection. Journal of Evolutionary Biology, 20(2), 415–432.CrossRefPubMed West, S. A., Griffin, A. S., & Gardner, A. (2007). Social semantics: altruism, cooperation, mutualism, strong reciprocity and group selection. Journal of Evolutionary Biology, 20(2), 415–432.CrossRefPubMed
Metadata
Title
Impact of Genetic Counseling and Testing on Altruistic Motivations to Test for BRCA1/2: a Longitudinal Study
Authors
Rahul Garg
Joseph Vogelgesang
Kimberly Kelly
Publication date
01-06-2016
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 3/2016
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-015-9911-z

Other articles of this Issue 3/2016

Journal of Genetic Counseling 3/2016 Go to the issue