Abstract
Anecdotal accounts suggest some patients have experienced negative outcomes as a result of receiving genetics services from non-genetics providers, but empirical evidence of these incidents and their outcomes is limited. This study examined genetic counselors’ perceptions of the occurrence of such incidents in the state of Minnesota. Twenty-five genetic counselors completed an on-line survey and 20 also participated in a semi-structured telephone interview. The interviewees recalled and described 37 specific incidents they perceived as having negative outcomes for patients and/or their families. Inductive and cross-case analysis revealed common themes including: adverse psychosocial effects, inadequate genetic counseling, genetic testing and screening errors, medical mismanagement, negative shifts in attitudes toward medical providers, and unnecessary use of health care resources. Commonly mentioned strategies for preventing/mitigating negative outcomes included: educational outreach and awareness programs for medical providers and the general public, standardized testing and screening processes, and implementing mechanisms for reporting and addressing adverse events. Additional findings, practice and policy implications, and research recommendations are discussed.
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References
American College of Surgeons Commission on Cancer (2012). Cancer program standards 2012: Ensuring patient-centered care. Retrieved from http://www.facs.org/cancer/coc/programstandards2012.pdf
ARUP Laboratories (2011). Value of genetic counselors in the laboratory. Retrieved from http://www.aruplab.com/files/resources/genetics/White-paper-1-value-of-GCs-in-lab.pdf
Baars, M. J. H., Henneman, L., & ten Kate, L. P. (2005). Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Genetics in Medicine, 7(9), 605–610.
Brierley, K. L., Campfield, D., Ducaine, W., Dohany, L., Donenberg, T., Shannon, K., et al. (2010). Errors in delivery of cancer genetics services: implications for practice. Connecticut Medicine, 74(7), 413–423.
Brierley, K. L., Blouch, E., Cogswell, W., Homer, J. P., Pencarinha, D., Stanislaw, C. L., et al. (2012). Adverse events in cancer genetic testing: medical, ethical, legal, and financial implications. The Cancer Journal, 18(4), 303–309.
Deftos, L. J. (1998). The evolving duty to disclose the presence of genetic disease to relatives. Academic Medicine, 73(9), 962–968.
Douglas, H. A., Hamilton, R. J., & Grubs, R. E. (2009). The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. Journal of Genetic Counseling, 18(5), 418–435.
Giardiello, F. M., Brensinger, J. D., Petersen, G. M., Luce, M. C., Hylind, L. M., Bacon, J. A., et al. (1997). The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. The New England Journal of Medicine, 336(12), 823–827.
Greendale, K., & Pyeritz, R. E. (2001). Empowering primary care health professionals in medical genetics: how soon? how fast? how far? American Journal of Medical Genetics, 106(3), 223–232.
Harvey, E. K., Fogel, C. E., Peyrot, M., Christensen, K. D., Terry, S. F., & McInerney, J. D. (2007). Providers’ knowledge of genetics: a survey of 5915 individuals and families with genetic conditions. Genetics in Medicine, 9(5), 259–267.
Hayflick, S. J., Eiff, M. P., Carpenter, L., & Steinberger, J. (1998). Primary care physicians’ utilization and perceptions of genetics services. Genetics in Medicine, 1(1), 13–21.
Hill, C. E., Thompson, B. J., & Williams, E. N. (1997). A guide to conducting consensual qualitative research. The Counseling Psychologist, 25(4), 517–572.
Hofman, K. J., Tambor, E. S., Chase, G. A., Geller, G., Faden, R. R., & Holtzman, N. A. (1993). Physicians’ knowledge of genetics and genetic tests. Academic Medicine, 68(8), 625–632.
Lindor, R. A., & Marchant, G. E. (2011). A review of medical malpractice claims related to clinical genetic testing. Journal of Clinical Oncology, 29(suppl). abstract 6073.
Myers, M. F., Chang, M., Jorgensen, C., Whitworth, W., Kassim, S., Litch, J. A., et al. (2006). Genetic testing for susceptibility to breast and ovarian cancer: evaluating the impact of a direct-to-consumer marketing campaign on physicians’ knowledge and practices. Genetics in Medicine, 8(6), 361–370.
National Society of Genetic Counselors (2010). 2010 Professional Status Survey: Work environment. Retrieved from http://www.nsgc.org/MemberCenter/LeadershipCenter/tabid/190/Default.aspx?EntryId=286
O’Shea, R., Murphy, A. M., Treacy, E., Lynch, S. A., Thirlaway, K., & Lambert, D. (2011). Communication of genetic information by other health professionals: the role of the genetic counsellor in specialist clinics. Journal of Genetic Counseling, 20(2), 192–203.
Pelias, M. Z. (2004). Medicolegal aspects of prenatal diagnosis. In A. Milunsky (Ed.), Genetic disorders and the fetus: Diagnosis, prevention, and treatment (pp. 1105–1134). Baltimore: Johns Hopkins University Press.
Ready, K. J., Daniels, M. S., Sun, C. C., Peterson, S. K., Northrup, H., & Lu, K. H. (2010). Obstetrics/gynecology residents’ knowledge of hereditary breast and ovarian cancer and Lynch syndrome. Journal of Cancer Education, 25, 401–404.
Schmerler, S. (2008). Lessons learned: Risk management issues in genetic counseling. New York: Springer.
Scholefield, J. H., Johnson, A. G., & Shorthouse, A. J. (1998). Current surgical practice in screening for colorectal cancer based on family history criteria. British Journal of Surgery, 85(11), 1543–1546.
Sifri, R. D. (2002). Cancer risk assessment from family history: gaps in primary care practice. Journal of Family Practice, 51(10), 856.
Singh, H., Schiesser, R., Anand, G., Richardson, P. A., & El-Serag, H. B. (2010). Underdiagnosis of Lynch syndrome involves more than family history criteria. Clinical Gastroenterology and Hepatology, 8(6), 523–529.
Suther, S., & Goodson, P. (2003). Barriers to the provision of genetic services by primary care physicians: a systematic review of the literature. Genetics in Medicine, 5(2), 70–76.
Task Force on Genetic Testing. (1998). In N. A. Holtzman & M. S. Watson (Eds.), Promoting safe and effective genetic testing in the United States: Final report of the task force on genetic testing. Baltimore: Johns Hopkins University Press.
Watson, E. K., Shickle, D., Qureshi, N., Emery, J., & Austoker, J. (1999). The ‘new genetics’ and primary care: GPs’ views on their role and their educational needs. Family Practice, 16(4), 420–425.
Wideroff, L., Vadaparampil, S. T., Greene, M. H., Taplin, S., Olson, L., & Freedman, A. N. (2005). Hereditary breast/ovarian and colorectal cancer genetics knowledge in a national sample of US physicians. Journal of Medical Genetics, 42(10), 749–755.
Williams, G. L., Gray, J., & Beynon, J. (2007). Cancer genetics clinics and the surgeon: a valuable role for family history screening. Annals of the Royal College of Surgeons of England, 89(2), 127–129.
Wood, M. E., Stockdale, A., & Flynn, B. S. (2008). Interviews with primary care physicians regarding taking and interpreting the cancer family history. Family Practice, 25(5), 334–340.
Acknowledgments
This study was done in partial fulfillment of the requirements for the first author’s Master of Science degree from the University of Minnesota. We would like to express our sincere appreciation to the genetic counselors who completed the online survey and to those who also shared their time and expertise in the interviews. We thank Rebecca Anderson, JD, MS, CGC, for providing feedback during the piloting of the survey and interview and Keith Dunder, Esq. for offering background on legal issues and cases related to genetics services. Dr. Christina Palmer served as Action Editor on the manuscript review process and publication decision.
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Bensend, T.A., Veach, P.M. & Niendorf, K.B. What’s the Harm? Genetic Counselor Perceptions of Adverse Effects of Genetics Service Provision by Non-Genetics Professionals. J Genet Counsel 23, 48–63 (2014). https://doi.org/10.1007/s10897-013-9605-3
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DOI: https://doi.org/10.1007/s10897-013-9605-3