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Journal of Genetic Counseling
Published in: Journal of Genetic Counseling 5/2016

01-10-2016 | Original Research

Impact of Genomic Counseling on Informed Decision-Making among ostensibly Healthy Individuals Seeking Personal Genome Sequencing: the HealthSeq Project

Authors: Sabrina A. Suckiel, Michael D. Linderman, Saskia C. Sanderson, George A. Diaz, Melissa Wasserstein, Andrew Kasarskis, Eric E. Schadt, Randi E. Zinberg

Published in: Journal of Genetic Counseling | Issue 5/2016

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Abstract

Personal genome sequencing is increasingly utilized by healthy individuals for predispositional screening and other applications. However, little is known about the impact of ‘genomic counseling’ on informed decision-making in this context. Our primary aim was to compare measures of participants’ informed decision-making before and after genomic counseling in the HealthSeq project, a longitudinal cohort study of individuals receiving personal results from whole genome sequencing (WGS). Our secondary aims were to assess the impact of the counseling on WGS knowledge and concerns, and to explore participants’ satisfaction with the counseling. Questionnaires were administered to participants (n = 35) before and after their pre-test genomic counseling appointment. Informed decision-making was measured using the Decisional Conflict Scale (DCS) and the Satisfaction with Decision Scale (SDS). DCS scores decreased after genomic counseling (mean: 11.34 before vs. 5.94 after; z = −4.34, p < 0.001, r = 0.52), and SDS scores increased (mean: 27.91 vs. 29.06 respectively; z = 2.91, p = 0.004, r = 0.35). Satisfaction with counseling was high (mean (SD) = 26.91 (2.68), on a scale where 6 = low and 30 = high satisfaction). HealthSeq participants felt that their decision regarding receiving personal results from WGS was more informed after genomic counseling. Further research comparing the impact of different genomic counseling models is needed.
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Literature
Ahman, A., Runestam, K., & Sarkadi, A. (2010). Did I really want to know this? pregnant women’s reaction to detection of a soft marker during ultrasound screening. Patient Education and Counseling, 81(1), 87–93.CrossRefPubMed
Andermann, A. J., Austoker, J., Watson, E. K., Lucassen, A. M., & Mackay, J. (2002). Development and evaluation of a general information leaflet for women with a family history of breast cancer. Journal of Cancer Education: The Official Journal of the American Association for Cancer Education, 17(3), 155–160.
Bernhardt, B. A., Soucier, D., Hanson, K., Savage, M. S., Jackson, L., & Wapner, R. J. (2013). Women’s experiences receiving abnormal prenatal chromosomal microarray testing results. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 15(2), 139–145.CrossRef
Biesecker, L. G., Mullikin, J. C., Facio, F. M., Turner, C., Cherukuri, P. F., Blakesley, R. W., et al. (2009). The clinseq project: piloting large-scale genome sequencing for research in genomic medicine. Genome Research, 19(9), 1665–1674.CrossRefPubMedPubMedCentral
Bloss, C. S., Ornowski, L., Silver, E., Cargill, M., Vanier, V., Schork, N. J., et al. (2010). Consumer perceptions of direct-to-consumer personalized genomic risk assessments. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 12(9), 556–566.CrossRef
Church, G. M. (2005). The personal genome project. Molecular Systems Biology, 1–3.
Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed., ). Mahwah, NJ: Lawrence Erlbaum Associates.
Colquhoun, D. (2014). An investigation of the false discovery rate and the misinterpretation of p-values. Royal Society Open Science, 1(3), 1–16.CrossRef
DeMarco, T. A., Peshkin, B. N., Mars, B. D., & Tercyak, K. P. (2004). Patient satisfaction with cancer genetic counseling: a psychometric analysis of the genetic counseling satisfaction scale. Journal of Genetic Counseling, 13(4), 293–304.CrossRefPubMedPubMedCentral
Field, A. (2013). Discovering statistics using IBM SPSS statistics (4th ed., ). Los Angeles, Ca: Sage.
Gonzalez-Garay, M. L., McGuire, A. L., Pereira, S., & Caskey, C. T. (2013). Personalized genomic disease risk of volunteers. Proceedings of the National Academy Of Sciences of the United States Of America, 110(42), 16957–16962.CrossRefPubMedPubMedCentral
Holmes-Rovner, M., Kroll, J., Schmitt, N., Rovner, D. R., Breer, M. L., Rothert, M. L., et al. (1996). Patient satisfaction with health care decisions: the satisfaction with decision scale. Medical Decision Making, 16(1), 58–64.CrossRefPubMed
Hooker, G. W., Ormond, K. E., Sweet, K., & Biesecker, B. B. (2014). Teaching genomic counseling: preparing the genetic counseling workforce for the genomic era. Journal of Genetic Counseling, 23(4), 445–451.CrossRefPubMedPubMedCentral
Ishiyama, I., Nagai, A., Muto, K., Tamakoshi, A., Kokado, M., Mimura, K., et al. (2008). Relationship between public attitudes toward genomic studies related to medicine and their level of genomic literacy in Japan. American Journal of Medical Genetics. Part A, 146A(13), 1696–1706.CrossRefPubMed
Kaphingst, K. A., Facio, F. M., Cheng, M. R., Brooks, S., Eidem, H., Linn, A., et al. (2012). Effects of informed consent for individual genome sequencing on relevant knowledge. Clinical Genetics, 82(5), 408–415.CrossRefPubMedPubMedCentral
Kleinveld, J. H., Ten Kate, L. P., van den Berg, M., van Vugt, J. M. G., & Timmermans, D. R. M. (2009). Does informed decision making influence psychological outcomes after receiving a positive screening outcome? Prenatal Diagnosis, 29(3), 271–273.CrossRefPubMed
Marteau, T. M., Dormandy, E., & Michie, S. (2001). A measure of informed choice. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 4(2), 99–108.CrossRef
Mills, R., & Haga, S. B. (2014). Genomic counseling: next generation counseling. Journal of Genetic Counseling, 23(4), 689–692.CrossRefPubMed
O’Connor, A. M. (1995). Validation of a decisional conflict scale. Medical Decision Making, 15(1), 25–30.CrossRefPubMed
Ormond, K. E. (2013). From genetic counseling to “genomic counseling”. Molecular Genetics & Genomic Medicine, 1(4), 189–193.CrossRef
Rimer, B. K., Briss, P. A., Zeller, P. K., Chan, E. C. Y., & Woolf, S. H. (2004). Informed decision making: what is its role in cancer screening? Cancer, 101(5 Suppl), 1214–1228.CrossRefPubMed
Sanderson, S. C., Diefenbach, M. A., Zinberg, R., Horowitz, C. R., Smirnoff, M., Zweig, M., et al. (2013). Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study. Journal of Community Genetics, 4(4), 469–482.
Sanderson, S. C., Linderman, M. D., Suckiel, S. A., Diaz, G. A., Zinberg, R. E., Ferryman, K., et al. (2015a). Motivations, concerns and preferences of personal genome sequencing research participants: baseline findings from the healthseq project. European Journal of Human Genetics.
Sanderson, S. C., Suckiel, S. A., Zweig, M., Bottinger, E. P., Jabs, E. W., & Richardson, L. D. (2015b). Development and preliminary evaluation of an online educational video about whole-genome sequencing for research participants, patients, and the general public. Genetics in Medicine.
Tercyak, K. P., Johnson, S. B., Roberts, S. F., & Cruz, A. C. (2001). psychological response to prenatal genetic counseling and amniocentesis. Patient Education and Counseling, 43(1), 73–84.CrossRefPubMed
Vassy, J. L., Lautenbach, D. M., McLaughlin, H. M., Kong, S. W., Christensen, K. D., Krier, J., et al. (2014). The MedSeq Project: a randomized trial of integrating whole genome sequencing into clinical medicine. Trials, 15(85), 1–12.
Wicklund, C., & Trepanier, A. (2014). Adapting genetic counseling training to the genomic era: more an evolution than a revolution. Journal of Genetic Counseling, 23(4), 452–454.CrossRefPubMed
Metadata
Title
Impact of Genomic Counseling on Informed Decision-Making among ostensibly Healthy Individuals Seeking Personal Genome Sequencing: the HealthSeq Project
Authors
Sabrina A. Suckiel
Michael D. Linderman
Saskia C. Sanderson
George A. Diaz
Melissa Wasserstein
Andrew Kasarskis
Eric E. Schadt
Randi E. Zinberg
Publication date
01-10-2016
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 5/2016
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-016-9935-z

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