Skip to main content
Top
Published in: Journal of Genetic Counseling 1/2015

01-02-2015 | Original Research

Information-Seeking and Sharing Behavior Following Genomic Testing for Diabetes Risk

Authors: Rachel Mills, Jill Powell, William Barry, Susanne B. Haga

Published in: Journal of Genetic Counseling | Issue 1/2015

Login to get access

Abstract

As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor’s office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants’ information-seeking and sharing behaviors after receiving their results in-person with a genetic counselor or online through the testing company’s website. We found that 32.6 % of participants sought information after receiving the genomic test results for T2DM; 80.8 % of those that did seek information turned to the Internet. Eighty-eight percent of participants reported that they shared their T2DM risk results, primarily with their spouse/partner (65 %) and other family members (57 %) and children (19 %); 14 % reported sharing results with their health provider. Sharing was significantly increased in those who received results in-person from the genetic counselor (p = 0.0001). Understanding patients’ interests and needs for additional information after genomic testing and with whom they share details of their health is important as more information and clinical services are available and accessed outside the clinician’s office. Genetic counselors’ expertise and experience in creating educational materials and promoting sharing of genetic information can facilitate patient engagement and education.
Literature
go back to reference Ahmed, O. H., Sullivan, S. J., Schneiders, A. G., & McCrory, P. R. (2012). Concussion information online: evaluation of information quality, content and readability of concussion-related websites. British Journal of Sports Medicine, 46(9), 675–683.PubMedCrossRef Ahmed, O. H., Sullivan, S. J., Schneiders, A. G., & McCrory, P. R. (2012). Concussion information online: evaluation of information quality, content and readability of concussion-related websites. British Journal of Sports Medicine, 46(9), 675–683.PubMedCrossRef
go back to reference Arora, N. K., Hesse, B. W., Rimer, B. K., Viswanath, K., Clayman, M. L., & Croyle, R. T. (2008). Frustrated and confused: the American public rates its cancer-related information-seeking experiences. Journal of General Internal Medicine, 23(3), 223–228.PubMedCrossRef Arora, N. K., Hesse, B. W., Rimer, B. K., Viswanath, K., Clayman, M. L., & Croyle, R. T. (2008). Frustrated and confused: the American public rates its cancer-related information-seeking experiences. Journal of General Internal Medicine, 23(3), 223–228.PubMedCrossRef
go back to reference Ashida, S., Koehly, L. M., Roberts, J. S., Chen, C. A., Hiraki, S., & Green, R. C. (2010). The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL study. European Journal of Human Genetics, 18(12), 1296–1301.PubMedPubMedCentralCrossRef Ashida, S., Koehly, L. M., Roberts, J. S., Chen, C. A., Hiraki, S., & Green, R. C. (2010). The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL study. European Journal of Human Genetics, 18(12), 1296–1301.PubMedPubMedCentralCrossRef
go back to reference Bloss, C. S., Wineinger, N. E., Darst, B. F., Schork, N. J., & Topol, E. J. (2013). Impact of direct-to-consumer genomic testing at long term follow-up. Journal of Medical Genetics, 50(6), 393–400.PubMedCrossRef Bloss, C. S., Wineinger, N. E., Darst, B. F., Schork, N. J., & Topol, E. J. (2013). Impact of direct-to-consumer genomic testing at long term follow-up. Journal of Medical Genetics, 50(6), 393–400.PubMedCrossRef
go back to reference Boston, M. M., Ruwe, E., Duggins, A., & Willging, J. P. (2005). Internet use by parents of children undergoing outpatient otolaryngology procedures. Archives of Otolaryngology, 131(8), 719–722.CrossRef Boston, M. M., Ruwe, E., Duggins, A., & Willging, J. P. (2005). Internet use by parents of children undergoing outpatient otolaryngology procedures. Archives of Otolaryngology, 131(8), 719–722.CrossRef
go back to reference Caulfield, T., & McGuire, A. L. (2012). Direct-to-consumer genetic testing: perceptions, problems, and policy responses. Annual Review of Medicine, 63, 23–33.PubMedCrossRef Caulfield, T., & McGuire, A. L. (2012). Direct-to-consumer genetic testing: perceptions, problems, and policy responses. Annual Review of Medicine, 63, 23–33.PubMedCrossRef
go back to reference Christensen, K. D., Jayaratne, T. E., Roberts, J. S., Kardia, S. L., & Petty, E. M. (2010). Understandings of basic genetics in the United States: results from a national survey of black and white men and women. Public Health Genomics, 13(7–8), 467–476.PubMedPubMedCentralCrossRef Christensen, K. D., Jayaratne, T. E., Roberts, J. S., Kardia, S. L., & Petty, E. M. (2010). Understandings of basic genetics in the United States: results from a national survey of black and white men and women. Public Health Genomics, 13(7–8), 467–476.PubMedPubMedCentralCrossRef
go back to reference Darst BF, Madlensky L, Schork NJ, Topol EJ, Bloss CS (2013) Characteristics of genomic test consumers who spontaneously share results with their health care provider. Health communication Darst BF, Madlensky L, Schork NJ, Topol EJ, Bloss CS (2013) Characteristics of genomic test consumers who spontaneously share results with their health care provider. Health communication
go back to reference EGAPP. (2007). Recommendations from the EGAPP working group: testing for cytochrome P450 polymorphisms in adults with nonpsychotic depression treated with selective serotonin reuptake inhibitors. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 9(12), 819–825.CrossRef EGAPP. (2007). Recommendations from the EGAPP working group: testing for cytochrome P450 polymorphisms in adults with nonpsychotic depression treated with selective serotonin reuptake inhibitors. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 9(12), 819–825.CrossRef
go back to reference Emslie, C., Hunt, K., & Watt, G. (2003). A chip off the old block? Lay understandings of inheritance among men and women in mid-life. Public Understanding of Science, 12(1), 47–65.CrossRef Emslie, C., Hunt, K., & Watt, G. (2003). A chip off the old block? Lay understandings of inheritance among men and women in mid-life. Public Understanding of Science, 12(1), 47–65.CrossRef
go back to reference Eysenbach, G., Powell, J., Kuss, O., & Sa, E. R. (2002). Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA : The Journal of the American Medical Association, 287(20), 2691–2700.PubMedCrossRef Eysenbach, G., Powell, J., Kuss, O., & Sa, E. R. (2002). Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA : The Journal of the American Medical Association, 287(20), 2691–2700.PubMedCrossRef
go back to reference Forrest, L. E., Burke, J., Bacic, S., & Amor, D. J. (2008). Increased genetic counseling support improves communication of genetic information in families. Genetics in Medicine, 10(3), 167–172.PubMedCrossRef Forrest, L. E., Burke, J., Bacic, S., & Amor, D. J. (2008). Increased genetic counseling support improves communication of genetic information in families. Genetics in Medicine, 10(3), 167–172.PubMedCrossRef
go back to reference Fox S (2011) The social life of health information, 2011. Prew research center’s internet & American life project. Pew research center Fox S (2011) The social life of health information, 2011. Prew research center’s internet & American life project. Pew research center
go back to reference Frost JH, Massagli MP (2008) Social uses of personal health information within patientslikeme, an online patient community: what can happen when patients have access to one another’s data. J Med Internet Res 10 (3)PubMedPubMedCentralCrossRef Frost JH, Massagli MP (2008) Social uses of personal health information within patientslikeme, an online patient community: what can happen when patients have access to one another’s data. J Med Internet Res 10 (3)PubMedPubMedCentralCrossRef
go back to reference Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., et al. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327–335.PubMedPubMedCentralCrossRef Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., et al. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327–335.PubMedPubMedCentralCrossRef
go back to reference Hesse, B. W., Nelson, D. E., Kreps, G. L., Croyle, R. T., Arora, N. K., Rimer, B. K., et al. (2005). Trust and sources of health information: the impact of the internet and its implications for health care providers: findings from the first health information national trends survey. Archives of Internal Medicine, 165(22), 2618–2624.PubMedCrossRef Hesse, B. W., Nelson, D. E., Kreps, G. L., Croyle, R. T., Arora, N. K., Rimer, B. K., et al. (2005). Trust and sources of health information: the impact of the internet and its implications for health care providers: findings from the first health information national trends survey. Archives of Internal Medicine, 165(22), 2618–2624.PubMedCrossRef
go back to reference Horrigan JB, Rainie L (2002) Counting on the Internet. Pew Internet & American Life Project. Horrigan JB, Rainie L (2002) Counting on the Internet. Pew Internet & American Life Project.
go back to reference Kim, K., & Kwon, N. (2010). Profile of e-patients: analysis of their cancer information-seeking from a national survey. Journal of Health Communication, 15(7), 712–733.PubMedCrossRef Kim, K., & Kwon, N. (2010). Profile of e-patients: analysis of their cancer information-seeking from a national survey. Journal of Health Communication, 15(7), 712–733.PubMedCrossRef
go back to reference Lachance, C. R., Erby, L. A., Ford, B. M., Allen, V. C., Jr., & Kaphingst, K. A. (2010). Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 12(5), 304–312.CrossRef Lachance, C. R., Erby, L. A., Ford, B. M., Allen, V. C., Jr., & Kaphingst, K. A. (2010). Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 12(5), 304–312.CrossRef
go back to reference Lanie, A. D., Jayaratne, T. E., Sheldon, J. P., Kardia, S. L., Anderson, E. S., Feldbaum, M., et al. (2004). Exploring the public understanding of basic genetic concepts. Journal of Genetic Counseling, 13(4), 305–320.PubMedPubMedCentralCrossRef Lanie, A. D., Jayaratne, T. E., Sheldon, J. P., Kardia, S. L., Anderson, E. S., Feldbaum, M., et al. (2004). Exploring the public understanding of basic genetic concepts. Journal of Genetic Counseling, 13(4), 305–320.PubMedPubMedCentralCrossRef
go back to reference Lea, D. H., Kaphingst, K. A., Bowen, D., Lipkus, I., & Hadley, D. W. (2011). Communicating genetic and genomic information: health literacy and numeracy considerations. Public Health Genomics, 14(4–5), 279–289.PubMed Lea, D. H., Kaphingst, K. A., Bowen, D., Lipkus, I., & Hadley, D. W. (2011). Communicating genetic and genomic information: health literacy and numeracy considerations. Public Health Genomics, 14(4–5), 279–289.PubMed
go back to reference Lehmann, L. S., Weeks, J. C., Klar, N., Biener, L., & Garber, J. E. (2000). Disclosure of familial genetic information: perceptions of the duty to inform. American Journal of Medicine, 109(9), 705–711.PubMedCrossRef Lehmann, L. S., Weeks, J. C., Klar, N., Biener, L., & Garber, J. E. (2000). Disclosure of familial genetic information: perceptions of the duty to inform. American Journal of Medicine, 109(9), 705–711.PubMedCrossRef
go back to reference Lemire, M., Sicotte, C., & Pare, G. (2008). Internet use and the logics of personal empowerment in health. Health Policy, 88(1), 130–140.PubMedCrossRef Lemire, M., Sicotte, C., & Pare, G. (2008). Internet use and the logics of personal empowerment in health. Health Policy, 88(1), 130–140.PubMedCrossRef
go back to reference Miller, L. M., & Bell, R. A. (2012). Online health information seeking: the influence of age, information trustworthiness, and search challenges. Journal of Aging and Health, 24(3), 525–541.PubMedCrossRef Miller, L. M., & Bell, R. A. (2012). Online health information seeking: the influence of age, information trustworthiness, and search challenges. Journal of Aging and Health, 24(3), 525–541.PubMedCrossRef
go back to reference Mills R, Barry W, Haga SB (2013) Public trust in genomic risk assessment for type 2 diabetes mellitus. Journal of genetic counseling [epub ahead of print] Mills R, Barry W, Haga SB (2013) Public trust in genomic risk assessment for type 2 diabetes mellitus. Journal of genetic counseling [epub ahead of print]
go back to reference Montgomery, G. H., Erblich, J., DiLorenzo, T., & Bovbjerg, D. H. (2003). Family and friends with disease: their impact on perceived risk. Preventive Medicine, 37(3), 242–249.PubMedCrossRef Montgomery, G. H., Erblich, J., DiLorenzo, T., & Bovbjerg, D. H. (2003). Family and friends with disease: their impact on perceived risk. Preventive Medicine, 37(3), 242–249.PubMedCrossRef
go back to reference NDIC (2007) Type 2 diabetes: what you need to know. ed07 edn NDIC (2007) Type 2 diabetes: what you need to know. ed07 edn
go back to reference Neelapala, P., Duvvi, S. K., Kumar, G., & Kumar, B. N. (2008). Do gynaecology outpatients use the internet to seek health information? A questionnaire survey. Journal of Evaluation in Clinical Practice, 14(2), 300–304.PubMedCrossRef Neelapala, P., Duvvi, S. K., Kumar, G., & Kumar, B. N. (2008). Do gynaecology outpatients use the internet to seek health information? A questionnaire survey. Journal of Evaluation in Clinical Practice, 14(2), 300–304.PubMedCrossRef
go back to reference Nelson, D. E., Kreps, G. L., Hesse, B. W., Croyle, R. T., Willis, G., Arora, N. K., et al. (2004). The health information national trends survey (HINTS): development, design, and dissemination. Journal of Health Communication, 9(5), 443–460. discussion 481–444.PubMedCrossRef Nelson, D. E., Kreps, G. L., Hesse, B. W., Croyle, R. T., Willis, G., Arora, N. K., et al. (2004). The health information national trends survey (HINTS): development, design, and dissemination. Journal of Health Communication, 9(5), 443–460. discussion 481–444.PubMedCrossRef
go back to reference NIH (2006) Small steps, big rewards: your game plan to prevent type 2 diabetes NIH (2006) Small steps, big rewards: your game plan to prevent type 2 diabetes
go back to reference Palomaki, G. E., Melillo, S., Marrone, M., & Douglas, M. P. (2013). Use of genomic panels to determine risk of developing type 2 diabetes in the general population: a targeted evidence-based review. Genetics in Medicine, 15(8), 600–611.PubMedPubMedCentralCrossRef Palomaki, G. E., Melillo, S., Marrone, M., & Douglas, M. P. (2013). Use of genomic panels to determine risk of developing type 2 diabetes in the general population: a targeted evidence-based review. Genetics in Medicine, 15(8), 600–611.PubMedPubMedCentralCrossRef
go back to reference Park, J., Chung, H., & Yoo, W. S. (2009). Is the Internet a primary source for consumer information search?: group comparison for channel choices. Journal of Retailing and Consumer Services, 16, 92–99.CrossRef Park, J., Chung, H., & Yoo, W. S. (2009). Is the Internet a primary source for consumer information search?: group comparison for channel choices. Journal of Retailing and Consumer Services, 16, 92–99.CrossRef
go back to reference Plantinga, L., Natowicz, M. R., Kass, N. E., Hull, S. C., Gostin, L. O., & Faden, R. R. (2003). Disclosure, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C(1), 51–59.PubMedPubMedCentralCrossRef Plantinga, L., Natowicz, M. R., Kass, N. E., Hull, S. C., Gostin, L. O., & Faden, R. R. (2003). Disclosure, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C(1), 51–59.PubMedPubMedCentralCrossRef
go back to reference Prudente, S., Dallapiccola, B., Pellegrini, F., Doria, A., & Trischitta, V. (2012). Genetic prediction of common diseases. Still no help for the clinical diabetologist! Nutrition, Metabolism, and Cardiovascular Diseases, 22(11), 929–936.PubMedPubMedCentralCrossRef Prudente, S., Dallapiccola, B., Pellegrini, F., Doria, A., & Trischitta, V. (2012). Genetic prediction of common diseases. Still no help for the clinical diabetologist! Nutrition, Metabolism, and Cardiovascular Diseases, 22(11), 929–936.PubMedPubMedCentralCrossRef
go back to reference Siliquini, R., Ceruti, M., Lovato, E., Bert, F., Bruno, S., De Vito, E., et al. (2011). Surfing the internet for health information: an italian survey on use and population choices. BMC Medical Informatics and Decision Making, 11, 21.PubMedPubMedCentralCrossRef Siliquini, R., Ceruti, M., Lovato, E., Bert, F., Bruno, S., De Vito, E., et al. (2011). Surfing the internet for health information: an italian survey on use and population choices. BMC Medical Informatics and Decision Making, 11, 21.PubMedPubMedCentralCrossRef
go back to reference Stoffel, E. M., Ford, B., Mercado, R. C., Punglia, D., Kohlmann, W., Conrad, P., et al. (2008). Sharing genetic test results in Lynch syndrome: communication with close and distant relatives. Clinical Gastroenterology and Hepatology, 6(3), 333–338.PubMedPubMedCentralCrossRef Stoffel, E. M., Ford, B., Mercado, R. C., Punglia, D., Kohlmann, W., Conrad, P., et al. (2008). Sharing genetic test results in Lynch syndrome: communication with close and distant relatives. Clinical Gastroenterology and Hepatology, 6(3), 333–338.PubMedPubMedCentralCrossRef
go back to reference van der Vaart, R., van Deursen, A. J., Drossaert, C. H., Taal, E., van Dijk, J. A., & van de Laar, M. A. (2011). Does the eHealth Literacy Scale (eHEALS) measure what it intends to measure? Validation of a Dutch version of the eHEALS in two adult populations. Journal of Medical Internet Research, 13(4), e86.PubMedPubMedCentralCrossRef van der Vaart, R., van Deursen, A. J., Drossaert, C. H., Taal, E., van Dijk, J. A., & van de Laar, M. A. (2011). Does the eHealth Literacy Scale (eHEALS) measure what it intends to measure? Validation of a Dutch version of the eHEALS in two adult populations. Journal of Medical Internet Research, 13(4), e86.PubMedPubMedCentralCrossRef
go back to reference van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Smit, W. M., Moens, H. J., Siesling, S., et al. (2009). Health-related Internet use by patients with somatic diseases: frequency of use and characteristics of users. Informatics for Health & Social Care, 34(1), 18–29.CrossRef van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Smit, W. M., Moens, H. J., Siesling, S., et al. (2009). Health-related Internet use by patients with somatic diseases: frequency of use and characteristics of users. Informatics for Health & Social Care, 34(1), 18–29.CrossRef
go back to reference Viswanath, K. (2005). Science and society: the communications revolution and cancer control. Nature Reviews Cancer, 5(10), 828–835.PubMedCrossRef Viswanath, K. (2005). Science and society: the communications revolution and cancer control. Nature Reviews Cancer, 5(10), 828–835.PubMedCrossRef
go back to reference Wagner Costalas, J., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., et al. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C(1), 11–18.PubMedCrossRef Wagner Costalas, J., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., et al. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C(1), 11–18.PubMedCrossRef
go back to reference Wong, L. M., Yan, H., Margel, D., & Fleshner, N. E. (2013a). Urologists in cyberspace: a review of the quality of health information from American urologists’ websites using three validated tools. Cancer Urologia Association Journal, 7(3–4), 100–107.CrossRef Wong, L. M., Yan, H., Margel, D., & Fleshner, N. E. (2013a). Urologists in cyberspace: a review of the quality of health information from American urologists’ websites using three validated tools. Cancer Urologia Association Journal, 7(3–4), 100–107.CrossRef
go back to reference Wong MCS, Hirai HW, Luk AKC, Lam TYT, Ching JYL, Griffiths SM et al. (2013) The knowledge of colorectal cancer symptoms and risk factors among 10,078 screening participants: are high risk individuals more knowledgeable? PloS one 8 (4)PubMedPubMedCentralCrossRef Wong MCS, Hirai HW, Luk AKC, Lam TYT, Ching JYL, Griffiths SM et al. (2013) The knowledge of colorectal cancer symptoms and risk factors among 10,078 screening participants: are high risk individuals more knowledgeable? PloS one 8 (4)PubMedPubMedCentralCrossRef
go back to reference Ye, Y. (2011). Correlates of consumer trust in online health information: findings from the health information national trends survey. Journal of Health Communication, 16(1), 34–49.PubMedCrossRef Ye, Y. (2011). Correlates of consumer trust in online health information: findings from the health information national trends survey. Journal of Health Communication, 16(1), 34–49.PubMedCrossRef
go back to reference Zeng, Q. T., Kogan, S., Plovnick, R. M., Crowell, J., Lacroix, E. M., & Greenes, R. A. (2004). Positive attitudes and failed queries: an exploration of the conundrums of consumer health information retrieval. International Journal of Medical Informatics, 73(1), 45–55.PubMedCrossRef Zeng, Q. T., Kogan, S., Plovnick, R. M., Crowell, J., Lacroix, E. M., & Greenes, R. A. (2004). Positive attitudes and failed queries: an exploration of the conundrums of consumer health information retrieval. International Journal of Medical Informatics, 73(1), 45–55.PubMedCrossRef
go back to reference Zhang Y, He D, Sang YM (2013) Facebook as a platform for health information and communication: a case study of a diabetes group. J Med Syst 37 (3) Zhang Y, He D, Sang YM (2013) Facebook as a platform for health information and communication: a case study of a diabetes group. J Med Syst 37 (3)
go back to reference Zulman, D. M., Kirch, M., Zheng, K., & An, L. C. (2011). Trust in the internet as a health resource among older adults: analysis of data from a nationally representative survey. Journal of Medical Internet Research, 13(1), e19.PubMedPubMedCentralCrossRef Zulman, D. M., Kirch, M., Zheng, K., & An, L. C. (2011). Trust in the internet as a health resource among older adults: analysis of data from a nationally representative survey. Journal of Medical Internet Research, 13(1), e19.PubMedPubMedCentralCrossRef
Metadata
Title
Information-Seeking and Sharing Behavior Following Genomic Testing for Diabetes Risk
Authors
Rachel Mills
Jill Powell
William Barry
Susanne B. Haga
Publication date
01-02-2015
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 1/2015
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-014-9736-1

Other articles of this Issue 1/2015

Journal of Genetic Counseling 1/2015 Go to the issue