Assessing Stakeholder Perceptions of the Utility of Genetic Information for the Clinical Care of Mental Health Disorders: We Have a Will but Need to See the Way

Abstract

Academic stakeholders’ (primarily mental health researchers and clinicians) practices and attitudes related to the translation of genetic information into mental health care were assessed. A three-part survey was administered at two large, urban universities. Response frequencies were calculated. Participants (N = 64) reported moderate levels of translational practice, adequate levels of genetic knowledge, and variable levels of genetic competence. They held positive attitudes toward translating genetic information about mental health broadly but negative attitudes about the impact that such information would have on specific aspects of care. The current study lays the groundwork for further inquiry into translating genetic information to mental health care.

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References

  1. Andreassen, O. A. (2017). EHealth provides a novel opportunity to exploit the advantages of the Nordic countries in psychiatric genetic research, building on the public health care system, biobanks, and registries. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics. doi:10.1002/ajmg.b.32561

  2. Arnett, D. K., Baird, A. E., Barkley, R. A., Basson, C. T., Boerwinkle, E., Ganesh, S. K., et al. (2007). Relevance of genetics and genomics for prevention and treatment of cardiovascular disease: A scientific statement from the American Heart Association Council on Epidemiology and Prevention, the Stroke Council, and the Functional Genomics and Translational Biology Interdisciplinary Working Group. Circulation,115, 2878–2901.

    PubMed  Google Scholar 

  3. Atkins, M. S., Rusch, D., Mehta, T. G., & Lakind, D. (2016). Future direction for dissemination and implementation science: Aligning ecological theory and public health to close the research to practice gap. Journal of Clinical Child and Adolescent Psychology,45, 215–226.

    PubMed  Google Scholar 

  4. Austin, J. C. (2019). Evidence-based genetic counseling fo psychiatric disorders: A road map. Cold Spring Harbor Perspectives in Medicine, 1–14.

  5. Baldwin, J. A., Williamson, H. J., Eaves, E. R., Levin, B., Burton, D. L., & Massey, O. T. (2017). Broadening measures of success: Results of a behavioral health translational research training program. Implementation Science,12(92), 1–11. https://doi.org/10.1186/s13012-017-0621-9.

    Article  Google Scholar 

  6. Belsky, D. W., Moffitt, T. E., & Caspi, A. (2012). Genetics in population health science: Strategies and opportunities. American Journal of Public Health,103, S73–S83.

    Google Scholar 

  7. Besterman, A. D., Moreno-De-Luca, D., & Nurnberger, J. I. (2019). 21st-century genetics in psychiatric residency training. How do we get there? JAMA Psychiatry,76, 1541–1546.

    Google Scholar 

  8. Brownson, R. C., Colditz, G. A., & Proctor, E. K. (2018). Dissemination and Implementation Research in Health: Translating Science to Practice. New York, NY: Oxford University Press.

    Google Scholar 

  9. Chambers, D. A., & Azrin, S. T. (2013). Partnership: A fundamental component of dissemination and implementation research. Psychiatric Services,64, 509–511.

    PubMed  Google Scholar 

  10. Chan, I. S., & Ginsberg, G. S. (2011). Personalized medicine: Progress and promises. Annual Review of Genomics Human Genetics,121, 2176–2244.

    Google Scholar 

  11. Centers for Disease Control and Prevention [CDC]. (2007). Evaluating family history for preventative medicine and public health. Available at http://www.talkhealthhistory.org/pdf/CDC%20-%20Evaluating%20FHH%20for%20Preventive%20Medicine%20%20Public%20Health.pdf

  12. Collins, F. S., & Varmus, H. (2015). A new initiative on precision medicine. New England Journal of Medicine,372, 793–795.

    CAS  PubMed  Google Scholar 

  13. Cornel, M. C., & El, C. G. (2017). Barriers and facilitating factors for implementation of genetic services: A Public Health Perspective. Frontiers in Public Health. https://doi.org/10.3389/fpubh.2017.00195.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Cornetta, K., & Brown, C. G. (2013). Balancing personalized medicine and personalized care. Academic Medicine,88(3), 309–313.

    PubMed  PubMed Central  Google Scholar 

  15. Costain, G., Esplen, M. J., Toner, B., Scherer, S. W., Meschino, W. S., Hodgkinson, K. A., et al. (2014a). Evaluating genetic counseling for individuals with schizophrenia in the molecular age. Schizophrenia Bulletin,40(1), 78–87. https://doi.org/10.1093/schbul/sbs138.

    Article  PubMed  Google Scholar 

  16. Costain, G., Esplen, M. J., Toner, B., Hodgkinson, K. A., & Bassett, A. S. (2014b). Evaluating genetic counseling for family members of individuals with schizophrenia in the molecular age. Schizophrenia Bulletin,40(1), 88–99. https://doi.org/10.1093/schbul/sbs124.

    Article  PubMed  Google Scholar 

  17. Cox, J. R., Martinez, R. G., & Southam-Gerow, M. A. (2019). Treatment integrity in psychotherapy research and implications for the delivery of quality mental health services. Journal of Consulting and Clinical Psychology,87, 221–233.

    PubMed  Google Scholar 

  18. Cross-Disorder Group of the Psychiatric Genomics Consortium. (2013). Genetic relationship between five psychiatric disorders estimated from genome-wide SNPs. Nature Genetics,45, 984–995.

    PubMed Central  Google Scholar 

  19. Crowley, M., Scott, J. T. B., & Fishbein, D. (2017). Translating preention research for evidence-based policymaking: Results from the research-to-policy collaboration pilot. Prevention Science. https://doi.org/10.1007/s11121-017-0833-x.

    Article  Google Scholar 

  20. De Vaus, D. (2002). Analyzing social science data. London, UK: SAGE Publishing.

    Google Scholar 

  21. Dick, D. M. (2017). Commentary for special issue of Prevention Science ‘Using genetics in prevention: Science fiction or science fact?’. Prevention Science. https://doi.org/10.1007/s11121-017-0828-7.

    Article  Google Scholar 

  22. Ebomoyi, W. E. (2013). Genomic epidemiology of cardiovascular disease, adoption of the health belief model to increase screening for known risk factors and use of natural approaches to enhance heart health. Journal Cardiovascular Diseases & Diagnosis, 01(05). DOI:10.4172/2329–9517.1000127

  23. Fernandez, C. V., Strahlendorf, C., Avard, D., Knoppers, B. M., O’Connell, C., Bouffet, E., et al. (2013). Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting. Genetics in Medicine,25, 558–564.

    Google Scholar 

  24. Finn, C. T., & Smoller, J. W. (2006). Genetic counseling in psychiatry. Harvard Review of Psychiatry,14(2), 109–121.

    PubMed  Google Scholar 

  25. Gil, F., Méndez, I., Sirgo, A., Llort, G., Blanco, I., & Cortés-Funes, H. (2003). Perception of breast cancer risk and surveillance behaviours of women with family history of breast cancer: A brief report on a Spanish cohort. Psycho-Oncology,12(8), 821–827.

    PubMed  Google Scholar 

  26. Ginsberg, G. S., & Willard, H. F. (2009). Genomics and personalized medicine: Foundations and applications. Translational Research,154, 278–287.

    Google Scholar 

  27. Glasgow, R. E., Vinson, C., Chambers, D., Khoury, M. J., Kaplan, R. M., & Hunter, C. (2012). National Institutes of Health approaches to dissemination and implementation science: Current and future directions. American Journal of Public Health,102, 1274–1281.

    PubMed  PubMed Central  Google Scholar 

  28. Gray, M. L., & Bonventre, J. V. (2002). Training PhD researchers to translate science to clinical medicine: Closing the gap from the other side. Nature Medicine,8, 433–436.

    CAS  PubMed  Google Scholar 

  29. Hamilton, S. P. (2018). The promise of psychiatric pharmacogenomics. Society of Biological Psychiatry,77, 29–35.

    Google Scholar 

  30. Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Information,42, 377–381.

    Google Scholar 

  31. Hudson, K., Javitt, G., & Byers, P. (2007). ASH statement on direct-to-consumer genetic testing in the United States. Obstetrics & Gynecolog,110, 1392–1395.

  32. Hoop, J. G., Salva, G., Roberts, L. W., Zisook, S., & Dunn, L. B. (2010). The current state of genetics traingn in psychiatric residency: Views of 235 U.S. educators and trainees. Academic Psychiatry,34, 109–114.

    PubMed  Google Scholar 

  33. Howe, G. W., Beach, S. R., Brody, G. H., & Wyman, P. A. (2016). Translating genetic research into preventive intervention: the baseline target moderated mediator design. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2015.01911.

    Article  PubMed  PubMed Central  Google Scholar 

  34. International Consortium for Blood Pressure Genome-Wide Association Studies. (2011). Genetic variants in novel pathways influence blood pressure and cardiovascular disease risk. Nature,478, 103–109.

    Google Scholar 

  35. International Schizophrenia Consortium. (2009). Common polygenic variation contributes to risk of schizophrenia that overlaps with bipolar disorder. Nature,460, 748–752.

    PubMed Central  Google Scholar 

  36. International Society of Psychiatric Genetics [ISPG]. (2017). Genetic testing statement. Available from https://ispg.net/genetic-testing-statement/

  37. Jameson, J. L., & Longo, D. L. (2015). Precision medicine—personalized, problematic, and promising. Obstetrical & Gynecological Survey,70(10), 612–614.

    Google Scholar 

  38. Kessler, R. C., Chiu, W. T., Demler, O., & Walters, E. E. (2005). Prevalence, severity, and comorbidity of Twelve-month DSM-IV disorders in the National Comorbidity Survey Replication (NCS-R). Archives of General Psychiatry,62, 617–627.

    PubMed  PubMed Central  Google Scholar 

  39. Khera, A. V., & Kathiresan, S. (2017). Genetics of coronary artery disease: Discovery, biology and clinical translation. Nature Review Genetics,18, 331–344.

    CAS  Google Scholar 

  40. Khoury, M. J., Gwinn, M., Yoon, P. W., Dowling, N., Moore, C. A., & Bradley, L. (2007). The continuum of translation research in genomic medicine: How can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genetics in Medicine,9, 665–674.

    PubMed  Google Scholar 

  41. Kimball, B. C., Nowakowski, K. E., Maschke, K. J., & McCormick, J. B. (2014). Genomic data in the electronic medical record: Perspectives from a biobank community advisory board. Electronic Processes in Research Administration,9(5), 16–24.

    Google Scholar 

  42. Klitzman, R., Appelbaum, P. S., Fyer, A., Martinez, J., Buquez, B., Wynn, J., et al. (2013). Researchers' views on return of incidental genomic research results: qualitative and quantitative findings. Genetics in Medicine,15, 888–895.

    PubMed  Google Scholar 

  43. Kon, A. A. (2008). The Clinical and Translational Science Award (CTSA) Consortium and the Translational Research Model. American Journal of Bioethics,8(3), 58–60.

    PubMed  Google Scholar 

  44. Lawrence, R. E., & Applebaum, P. S. (2011). Genetic testing in psychiatry: A review of attitudes and beliefs. Psychiatry,74, 315–331.

    PubMed  PubMed Central  Google Scholar 

  45. Lydiard, J., & Nemeroff, C. B. (2019). Biomarker-guided tailored therapy. In Y.-K. Kim (ed) Frontiers in Psychiatry: Artificial Intelligence, Precision Medicine, and Other Paradign Shifts. Singapore: Springer Nature.

  46. Macdonald, D. J., Sarna, L., Weitzel, J. N., & Ferrell, B. (2009). Women’s perceptions of the personal and family impact of genetic cancer risk assessment: Focus group findings. Journal of Genetic Counseling,19(2), 148–160.

    PubMed  Google Scholar 

  47. Moldovan, R., Pintea, S., & Austin, J. (2017). The efficacy of genetic counseling for psychiatric disorders: A meta-analysis. Journal of Genetic Counseling,26, 1341–1347.

    PubMed  Google Scholar 

  48. National Center for Advancing Translational Science. (2016). Translational Science Spectrum. Available at https://ncats.nih.gov/translation/spectrum

  49. Nilsen, P. (2015). Making sense of implementation theories, models, and frameworks. Implementation Science,10, 53.

    PubMed  Google Scholar 

  50. Norman, P., & Brain, K. (2005). An application of an extended health belief model to the prediction of breast self-examination among women with a family history of breast cancer. British Journal of Health Psychology,10(1), 1–16.

    PubMed  Google Scholar 

  51. Nurnberger, J. I., Austin, J., Berrettini, W. H., Besterman, A. D., DeLisi, L. E., Grice, D. E. Zai, G. (2019). What should a psychiatrist know about genetics? Review and recommendations from the Residency Educaiton Committee of the International Society of Psychiatric Genetics. Journal of Clinical Psychiatry, 80(1), 17nr12046.

  52. Pettus-Davis, C., Grady, M. D., Guddeback, G. D., & Scheyett, A. (2011). A practitioner’s guide to sampling in the age of evidence-based practice: Translation of research into practice. Clinical Social Work,39, 379–389.

    Google Scholar 

  53. Phillips, K., Jenkins, M., Lindeman, G., Mclachlan, S., Mckinley, J., Weideman, P., et al. (2006). Risk-reducing surgery, screening and chemoprevention practices of BRCA1 and BRCA2 mutation carriers: A prospective cohort study. Clinical Genetics,70(3), 198–206.

    PubMed  Google Scholar 

  54. Prom-Wormley, E., Clifford, J. S., Bourdon, J. L., Barr, P., Blondino, C., Ball, K. M., et al. (2019). Developing community-based health education strategies with family history: Assessing the association between community resident family history and interest in health education. Social Science in Medicine. https://doi.org/10.1016/j.socscimed.2019.02.011.

    Article  Google Scholar 

  55. R Development Core Team. R: A language and environment for statistical computing. R Foundation for Statistical Computing. Vienna, Austria; 2015. ISBN 3–900051–07–0. Retrieved from https://www.R-project.org

  56. Ramoni, R. B., Mcguire, A. L., Robinson, J. O., Morley, D. S., Plon, S. E., & Joffe, S. (2013). Experiences and attitudes of genome investigators regarding return of individual genetic test results. Genetics in Medicine,15(11), 882–887.

    PubMed  PubMed Central  Google Scholar 

  57. Rubio, D. M., Schoenbaum, E. E., Lee, L. S., Schteingart, D. E., Marantz, P. R., & Anderson, K. E., et al. (2010). Defining translational research: Implications for trainng. Academic Medicine,85, 470–475.

    PubMed  PubMed Central  Google Scholar 

  58. Salm, M., Abbate, K., Applebaum, P., Ottman, R., Chung, W., & Marder, K., et al. (2014). Use of genetic tests among neurologists and psychiatrists: Knowledge, attitudes, behaviors, and needs for training. Journal of Genetic Counseling,23, 156–163.

    PubMed  Google Scholar 

  59. Schizophrenia Working Group of the Psychiatric Genomics Consortium. (2014). Biological insights from 108 schizophrenia-associated genetic loci. Nature,511, 421–427.

    PubMed Central  Google Scholar 

  60. Schoenwald, S. K., & Hoagwood, K. (2001). Effectiveness, transportability, and dissemination of interventions: What matters when? Psychiatric Services,52, 1190–1197.

    CAS  PubMed  Google Scholar 

  61. Semaka, A., & Austni, J. (2019). Patient perspectives on the process and outcomes of psychiatric genetic counseling: An Empowering Encounter. Journal of Genetic Counseling,28, 8576–8868.

    Google Scholar 

  62. Spencer, A. L., Brosenitsch, T., Levine, A. S., & Kanter, S. L. (2008). Back to the basic sciences: An innovative approach to teaching senior medical students how best to integrate basic science and clinical medicine. Academic Medicine,83, 662–669.

    PubMed  Google Scholar 

  63. Sperber, N. R., Carpenter, J. S., Cavallari, L. H., Damschroder, L. J., Cooper-Dehoff, R. M., Denny, J. C., et al. (2017). Challenges and strategies for implementing genomic services in diverse settings: Experiences from the Implementing GeNomics In pracTicE (IGNITE) network. BMC Medical Genomics,10(35), 1–11. https://doi.org/10.1186/s12920-017-0273-2.

    Article  Google Scholar 

  64. Sullivan, P. F., Agrawal, A., Bulik, C. M., Andreassen, O. A., Børglum, A. D., Breen, G., et al. (2018). Psychiatric genomics: An update and an agenda. American Journal of Psychiatry,175(1), 15–27.

    PubMed  Google Scholar 

  65. Sullivan, P. F., Daly, M. J., & O’Donovan, M. (2012). Genetic architectures of psychiatric disorders: The emerging picture and its implications. Nature Review Genetics,13(8), 537–551.

    CAS  Google Scholar 

  66. Southam-Gerow, M. A., Ringelsen, H. L., & Sherrill, J. T. (2006). Integrating interventions and services research; Progress and prospects. Clinical Psychology Science Practice,V13(N1), 1–8.

    Google Scholar 

  67. Tabak, R. G., Khoong, E. C., Chambers, D. A., & Brownson, R. C. (2012). Bridging research and practice: Models for dissemination and implementation research. American Journal of Preentative Medicine,43, 337–350.

    Google Scholar 

  68. van der Laan, A. L., & Boenink, M. (2012). Beyond bench and bedside: Disentangling the concept of translational research. Health Care Analysis,23(1), 32–49.

    PubMed Central  Google Scholar 

  69. Visscher, P. M., Wray, N. R., Zhang, Q., Sklar, P., McCarthy, M. I., Brown, M. A., et al. (2016). 10 years of GWAS discovery: Biology, function, and translation. The American Journal Human Genetics,101, 5–22.

    Google Scholar 

  70. Vornanen, M., Konttinen, H., Kaariainen, H., Mannisto, S., Saloma, V., & Haukkala, A. (2016). Family history and perceived risk of diabetes, cardiovascular disease, cancer, and depression. Preventative Medicine,90, 177–183.

    Google Scholar 

  71. Wandersman, A., Duffy, J., Flaspohler, P., Noonan, R., Lubell, K., Stillman, L., et al. (2008). Bridging the gap between prevention research and practice: The interactive systems framework for dissemination and implementation. American Journal of Community Psychology,41, 171–181.

    PubMed  Google Scholar 

  72. Waldman, S. A., & Terzic, A. (2010). Clinical and translational science: From bench-bedside to global village. Clinical and Translational Science,3(5), 254–257.

    PubMed  PubMed Central  Google Scholar 

  73. Wilson, B. J., Islam, R., Francis, J. J., Grimshaw, J. M., Permaul, J. A., Allanson, J. E., et al. (2016). Supporting genetics in primary care: Investigating how theory can inform professional education. European Journal of Human Genetics,24, 1541–1546.

    PubMed  PubMed Central  Google Scholar 

  74. Wittchen, H.-U., Knappe, S., Andersson, G., Araya, R., Banos Rivera, R. M., Barkham, M., et al. (2014). The need for a behavioural science focus in research on mental health and mental disorders. International Journal of Methods in Psychiatric Research,23, 28–40.

    PubMed  Google Scholar 

  75. Zhou, Y. Z., Wilde, A., Meiser, B., Mitchell, P. B., Barlow-Stewart, K., & Schofield, P. R. (2014). Attitudes of medical genetics practitioners and psychiatrists toward communicating with patients about genetic risk for psychiatric disorders. Psychiatric Genetics,24(3), 94–101.

    PubMed  Google Scholar 

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Acknowledgements

The authors would like to acknowledge the input of the then-graduate students who helped with the development of this survey, including the now-Drs. Elizabeth Do, Sage Hawn, Dana Lapato, Elizabeth Long, Ashlee Moore, Cassie Overstreet, and Jeanne Savage. We would also like to thank Dr. Brad Verhulst for his help administering the survey to his colleagues at Michigan State University.

Funding

JLB was formerly supported by the National Institute of Mental Health training grant T32MH020030 to complete the survey. She was supported by National Institute on Drug Abuse Grant T32DA015035 to complete revisions of this manuscript.

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Correspondence to Jessica L. Bourdon.

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Jessica L. Bourdon, John M. Hettema, Elizabeth C. Prom-Wormley, and Michael A. Southam-Gerow declare that they have no conflicts of interest.

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The authors followed all ethical guidelines when conducting research related to this study.

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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000.

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Informed consent was not necessary for this study because it was declared exempt. Participation in the study was voluntary.

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Bourdon, J.L., Hettema, J.M., Prom-Wormley, E.C. et al. Assessing Stakeholder Perceptions of the Utility of Genetic Information for the Clinical Care of Mental Health Disorders: We Have a Will but Need to See the Way. Adm Policy Ment Health (2020). https://doi.org/10.1007/s10488-020-01058-7

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Keywords

  • Translational science
  • Genetics
  • Mental health
  • Practice