Cancer genetics testing and counseling
To schedule a genetic counseling appointment in-person or via telemedicine at Ascension St. Vincent, please call 317-338-7475.
Cancer may be caused by abnormal gene changes known as mutations. Mutations accumulate over time, leading to sporadic cancer. Sometimes environmental factors influence the accumulation of mutations. In a small percentage of families, a gene mutation can be passed on from generation to generation. Inherited mutations may predispose those who are carriers to develop particular types of cancer. Not everyone with an inherited mutation will develop cancer, although the risks are increased.
Frequently Asked Questions (FAQs)
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Who should consider genetic counseling?
If you or a close relative has had:
- Cancer at a younger age than usual (under age 50)
- A rare type of cancer (such as male breast cancer or medullary thyroid cancer)
- Multiple primary or bilateral cancers
- Multiple close relatives with cancer of the same type
- A personal diagnosis of certain cancers for which genetic testing may have implications for treatment such as triple negative breast cancer, ovarian cancer, metastatic prostate cancer or pancreatic cancer
- A relative who carries a mutation in a hereditary cancer gene
- Concern about your family history of cancer
Genetic counseling and testing for hereditary cancer is available through Ascension St. Vincent. Knowing your risk for cancer can help you make informed choices about your medical management, including enhanced surveillance, taking potential medications to lower the risk of developing certain cancers, and other optional preventive measures, such as risk-reducing surgery. For individuals diagnosed with certain types of cancer, genetic testing may influence medical treatment. Our board-certified genetic counselors work closely with your physician to help communicate findings that may be important to cancer surveillance and your medical care.
For more information about the purpose of genetic counseling, watch this video.
In-person genetic counseling services:
Genetic counseling services are available in-person at our Indianapolis campus, and via telegenetics (video consultation) from several locations around the state and from your own personal device at home.
Cancer Genetics Risk Assessment Program
Professional Office Building, Suite 324
8402 Harcourt Rd.
Indianapolis, IN, 46260
A free parking garage is conveniently located at this location.
Telegenetics (Virtual Visits)
We are now offering genetic counseling services through telegenetics (online video calls, also called virtual visist) from several Ascension Hospitals in Indiana and on your own personal device from your home.
What should I expect during the genetic counseling session?
Genetic counseling involves reviewing your personal medical and family history, discussing your risk for developing cancer, and the risk that there is a hereditary cause for cancer in your family. We will discuss genetic testing options that may be available, including the risks, benefits and limitations of testing, as well as how the information may impact medical management for you and your family members. Prior to your appointment, you will be sent a secure link via email to complete your medical and family history online. This information is used during the appointment to determine your personal risk for developing cancer as well as the likelihood that there is a genetic predisposition for cancer in your family. Completing this on-line ahead of time allows for more time during the genetic counseling session to discuss personalized risk, surveillance and testing options. Additionally, it allows the Genetic Counselor the opportunity to review your history before the appointment and prepare. Also in the email, you will find links to three short videos that are helpful to watch prior to your appointment. These videos will help explain why you have been referred for genetic counseling, what happens during the session, and some basic information on cancer genetics and testing for hereditary cancer. The purpose of these videos is to provide personal value to your experience with our program and to help make your appointment more efficient!
For more information about what happens in a genetic counseling session, watch this video.
What does genetic testing involve?
We will discuss the benefits, limitations, and potential outcomes of genetic testing during your visit and how they may have an impact on medical management for you and your family. Genetic testing may not be appropriate for everyone, and many factors need to be considered. Currently, genetic tests are available to detect a variety of hereditary cancer syndromes. These include (but are not limited to) cancers that involve the breast, colon, ovary, thyroid, kidney and prostate. Genetic testing may be done using saliva or blood. If you would like the option for testing with saliva, you should not eat or drink for 30 minutes prior to your appointment. In most cases, results take approximately 3 weeks to be completed. We usually contact you by phone with the results. If a mutation is identified with genetic testing, we will schedule a follow-up visit to discuss the test results and their implications.
Will my insurance cover genetic testing?
Genetic testing is usually covered by insurance companies. We cannot establish coverage for genetic testing until we assess medical and family history during our initial genetic counseling session, as this information is important to determine which laboratory will be used, what test will be ordered and if you meet medical criteria for testing. We will work with the laboratory that provides genetic testing to ensure the best coverage possible. How much you have to pay out of pocket is determined by your insurance plan and deductible. The good news is that in most cases, the out-of-pocket cost is $100 or less. There are also options for financial assistance for those who have no insurance, and payment plans that may be investigated if testing is not fully covered by those with insurance.
The genetic counseling session is covered by many insurance companies. Genetic counseling is billed under the CPT code for genetic counseling (96040). Genetic counseling is not a covered benefit for those on Medicare, although Medicare frequently covers the cost of genetic testing and there is a financial discount for individuals who do not have coverage for the session. Ascension St. Vincent also offers a sliding scale for those who need financial assistance. You can call 1-800-582-8258, or email firstname.lastname@example.org for more information. Another useful resource is the Ascension St. Vincent Billing Services website, which has financial assistance information, contact numbers and applications.
Some insurance companies will cover virtual visits. We will attempt to pre-authorize and bill your insurance for virtual visits. Co-pay amounts may apply to virtual services when coverage is available per your payer. If coverage is not available, you agree to assume responsibility for payment.
Can I lose my health insurance if I have genetic testing?
There are state and Federal laws in place to protect against health insurance and employment discrimination with respect to genetic test results. Please note that there are no such protections in place for life insurance and long-term disability. Therefore, if you have no personal history of cancer, you may want to make sure you have your preferred life insurance in place prior to genetic testing. For more information on Genetic Discrimination/Public Policy, please see these resources:
- Genetic and Public Policy Center Genetic Alliance
- National Conference of State Legislatures
- Federal Laws
- Health Insurance and Employment Coalition for Genetic Fairness
- GINA (Genetic Information Non-discrimination Act)
Meet Our Genetic Counselors
Dawn M. Nixon, MS, LCGC
Dawn (McIlvried) Nixon is a certified and licensed Genetic Counselor who holds a Master’s degree in genetic counseling. After graduating from the Indiana University Genetic Counseling Program in 2004, she practiced genetic counseling at the University of Alabama at Birmingham (UAB) in preconception, prenatal, pediatric, and cancer genetics. She also was involved in the education of medical students and residents at UAB. Dawn began working at St.Vincent Cancer Care’s Genetic Risk Assessment Program in January 2008. She is involved in several clinical research and professional projects through the Cancer Genetics Program at St. Vincent Cancer Care. She also offers educational presentations for the medical staff and community and is involved with the National Society of Genetic Counselors (NSGC). Dawn is an Adjunct Assistant Professor of Medical and Molecular Genetics at Indiana University School of Medicine, where she gives lectures on Cancer Genetic Counseling and is involved in supervision of genetic counseling students from the Indiana University Genetic Counseling Program. – She is co-author on several publications related to service delivery in genetic counseling.
Nixon, D.M., Harwood, C.E., Kreyling, G. and Cohen, S.A. Genetic Counselor Extenders Help Meet Growing Demand for Services. Oncology Issues, July 2019, 34:4, 36-45.
Scherr, C.E., Feuston, J.L., Nixon, D.M. and Cohen, S.A. A two phase approach to developing SNAP: An iPhone application to support appointment scheduling and management for women with a BRCA mutation. Journal of Genetic Counseling, April 2018.
Cohen, S.A., Nixon, D.M., and Scherr, C.E. An iPhone Application Intervention to Promote Surveillance among Women with a BRCA mutation: Pre-Intervention Data. Journal of Genetic Counseling, April 2018.
Cohen, S.A., and Nixon, D.M. A collaborative approach to risk assessment services using genetic counselor extenders in a multi-system community hospital. Breast Cancer Res Treat 2016; 158(3)
Cohen, S.A., Nixon, D.M., and Scherr, C.L. Development of an iPhone Application to Support Tracking and Adherence to Recommended Guidelines for Women with a BRCA Mutation. Poster presentation at the St. Vincent Hospital Research Symposium in Indianapolis, IN (June 15th, 2016).
Cohen, S.A. and McIlvried, D.E. Do BRCA Positive Women Need Better Follow-Up? Gaining Perspective from a Midwest BRCA Population. Poster presentation at the National Society of Genetic Counselors annual education meeting at Boston MA (October 23-27, 2012).
Cohen, S.A. and McIlvried, D.E. Genetic Counselor Review of Gynecologic Pathology Reports Improves Quality of a Lynch Screening Program. Poster Presentation at the Collaborative Group of the Americas Inherited Colorectal Cancer annual education meeting at Boston MA (October 27-28, 2012)
Cohen, S.A. and McIlvried, D.E. Impact of computer-assisted data collection, evaluation and management on the cancer genetic counselor’s time providing patient care. Familial Cancer 2011; 10(2): 381-9.
McIlvried, D.E., Birhiray, R. and Lu, J. Z. Atypical identification of Lynch syndrome by immunohistochemistry and microsatellite instability testing on jejunal adenocarcinoma. Familial Cancer 2010; 9(3): 377-81. Also presented as a poster at the Collaborative Group of the Americas Inherited Colorectal Cancer (CGA-ICC) national annual education meeting at Dallas TX (October 12-13, 2010)
Cohen, S.A., McIlvried, D. E. and Schnieders, J. A collaborative approach to genetic testing: A community hospital’s experience. Journal of Genetic Counseling 2009; 18: 530-33.
Cohen, S. A. and McIlvried, D. E. Evaluating patient understanding and satisfaction of the genetic testing process for hereditary cancer: Does ordering provider make a difference? Poster presentation at the St. Vincent Annual Research Symposium, May 2009, and at the National Society of Genetic Counselors Annual Education Conference, November 2009.
McIlvried D.E., Prucka S.K., Herbst M., Barger, C. and Robin, N.H. The use of role-play to enhance medical student understanding of genetic counseling. Genetics In Medicine 2008; (10) 10: 739-44.
Prucka S.K., McIlvried D.E., Korf, B.R. Cancer risk assessment and the genetic counseling process: Using hereditary breast and ovarian cancer as an example. Invited review paper, submitted to Medical Principles and Practices, October 2007.
McIlvried D.E., Robin N., Holt R.L., Prucka S., Herbst M. and Barger, C. Medical student understanding of the genetic counseling process: Use of role-play as a unique teaching tool. National Society of Genetic Counselors Annual Education Meeting Platform Presentation and Abstract Publication in Journal of Genetic Counseling, Fall 2007.
Stephanie A. Cohen, MS, LCGC
Stephanie Cohen is a board-certified and licensed Genetic Counselor. She earned her MS degree in Genetic Counseling at the University of Michigan. She has provided cancer genetic counseling since 1998 and was instrumental in developing the Cancer Genetics Risk Assessment Program at St. Vincent Hospital. Stephanie has been very involved in the field of genetic counseling at a local and national level. She has a special interest in identifying and evaluating service delivery models to expand access to genetic counseling. She has co-authored numerous publications and given presentations across the country on the topic. She also is active in training genetic counseling students.
Nixon, D. M., Harwood, C. E., Kreyling, G., & Cohen, S. A. (2019). Genetic Counselor Extenders Help Meet Growing Demand for Services. Oncology Issues, 34(4), 36-45, doi:10.1080/10463356.2019.1622360.
Cohen, S.A., et al., Genetic Counseling and Testing in a Community Setting: Quality, Access, and Efficiency. American Society of Clinical Oncology Educational Book, 2019(39): p. e34-e44.
Stoll K, Kubendran S, Cohen SA. The past, present and future of service delivery in genetic counseling: Keeping up in the era of precision medicine. Am J MedGenet Part C Semin Med Genet. 2018; 00:1–14. https://doi.org/10.1002/ajmg.c.31602
Cohen, S.A. & Tucker, M.E. J Genet Counsel (2018). Movement of Genetic Counselors from Clinical to Non-clinical Positions: Identifying Driving Forces. J Genet Counseling, https://doi.org/10.1007/s10897-018-0242-8
Cohen, S.A., Scherr, C.L. & Nixon, D.M. (2018) An iPhone Application Intervention to Promote Surveillance Among Women with a BRCA Mutation: Pre-intervention Data. J Genet Counseling, doi.org/10.1007/s10897-018-0224-x
Scherr, C.L., Feuston, J.L., Nixon, D.M., Cohen S.A. (2018) A Two-Phase Approach to Developing SNAP: an iPhone Application to Support Appointment Scheduling and Management for Women with a BRCA Mutation. J Genet Counseling, doi.org/10.1007/s10897-018-0222-z
Lammert, J., Lubinski, J., Gronwald, J., Huzarski, T., Armel, S., Eisen, A., Meschino, W., Lynch, H., Snyder, C., Eng, C., Olopade, O., Ginsburg, O., Foulkes, W., Elser, C., Cohen, S., Kiechle, M., Narod, S., Kotsopoulos, J. Physical activity during adolescence and young adulthood and the risk of breast cancer in BRCA1 and BRCA2 mutation carriers (2018). Breast Cancer Res Treat, doi.org/10.1007/s10549-018-4694-1
Freivogel M, Cohen S. (2018) Your Genes: One Size Doesn't Fit All. J Natl Compr Canc Netw, doi:10.6004/jnccn.2017.7055
Goedde LN, Stupiansky NW, Lah M, Quaid KA, Cohen S. (2017). Cancer Genetic Counselors’ Current Practices and Attitudes Related to the Use of Tumor Profiling. Journal of Genetic Counseling, doi:10.1007/s10897-017-0065-z
Cohen, SA, Tucker, ME and Delk, P (2016). Genetic Counselor Workforce Issues: a Survey of Genetic Counselors Licensed in the State of Indiana. Journal of Genetic Counseling, doi:10.1007/s10897-016-0026-y.
Cohen, SA, Nixon, DM (2016). A collaborative approach to cancer risk assessment services using genetic counselor extenders in a multi-system community hospital. Breast Cancer Research Treatment, Volume 159, Issue 3, pp 527–534, DOI: 10.1007/s10549-016-3964-z.
Cohen, S. A., Tan, C. A., & Bisson, R. (2016). An individual with both MUTYH-associated polyposis and Lynch syndrome identified by multi-gene hereditary cancer panel testing: a case report. [Case Report]. Front. Genet., Volume 7, Issue 6, doi:10.3389/fgene.2016.00036.
Cohen, SA, Huziak, RC, Gustafson, S and Grubs, RE (2015). Analysis of Advantages, Limitations, and Barriers of Genetic Counseling Service Delivery Models. Journal of Genetic Counseling, Volume 25, Issue 5, pp 1010–1018, DOI: 10.1007/s10897-016-9932-2.
Redlinger-Grosse, K., Veach, P., Cohen, S., LeRoy, B., MacFarlane, I., & Zierhut, H. (2015). Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model. Journal of Genetic Counseling, 1-19, doi:10.1007/s10897-015-9864-2.
Trepanier, AM, Cohen, SA and Allain, DM (2015). Thinking Differently About Genetic Counseling Service. Current Genetic Medicine Reports, April 2015.
Cohen, S. & Leininger, A. (2014). The genetic basis of Lynch syndrome and its implications for clinical practice and risk management. The Application of Clinical Genetics, 2014:7, pp 147-158, http://dx.doi.org/10.2147/TACG.S51483.
Cohen, S. & Mcilvried, D. (2013). Improving Access with a Collaborative Approach to Cancer Genetic Counseling Services: A Pilot Study. Community Oncology, August 2013.
Cohen, S. (2013). Current Lynch Syndrome Tumor Screening Practices: A Survey of Genetic Counselors. Journal of Genetic Counseling, doi 10.1007/s10897-013-9603-5.
Cohen, S., Marvin, M., Riley, B., Vig, H., Rousseau, J., & Gustafson, S. (2013). Identification of Genetic Counseling Service Delivery Models in Practice: A Report from the NSGC Service Delivery Model Task Force. Journal of Genetic Counseling, 1-11, doi 10.1007/s10897-013-9588-0.
Cohen, S., Gustafson, S., Marvin, M., Riley, B., Uhlmann, W., Liebers, S., et al. (2012). Report from the National Society of Genetic Counselors Service Delivery Model Task Force: A Proposal to Define Models, Components, and Modes of Referral. Journal of Genetic Counseling, 21(5), 645-651.
Cohen, S., & McIlvried, D. (2011). Impact of computer-assisted data collection, evaluation and management on the cancer genetic counselor’s time providing patient care. Familial Cancer, 10(2), 381-389.
Cohen, S. A., McIlvried, D., & Schnieders, J. (2009). A collaborative approach to genetic testing: a community hospital's experience. J Genet Couns, 18(6), 530-533
Cohen, SA. (2009) Muir-Torre syndrome associated with a mutation in MSH6: multiple sebaceous carcinomas as the presenting feature. Community Oncology 6(9), 418-421.
Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, DeSai D, Zandvakili I, Royer R, Li S and Narod SA (2009) The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. BMC Cancer 9:86.
Emily C. Lichtenberg, MS, LCGC
Emily Lichtenberg is a board-certified and licensed Genetic Counselor. She earned her MS degree in Genetic Counseling at Indiana University. She began cancer genetic counseling in 1994 at Case Western Reserve University. She has also held genetic counseling positions at Community Hospitals and Indiana University in Indianapolis. Emily has given numerous presentations across the country on topics ranging from Cancer Genetics to Hemophilia to Fetal Alcohol Spectrum. Emily joined the Ascension St. Vincent Cancer Genetics Risk Assessment Program in February 2020.
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If you have an appointment with us (or are thinking about making one!), some useful information to know for your visit:
Why should you consider genetic counseling?
- Click here to watch a brief video.
- Genetic Counseling/Testing Information
- For those who have cancer (or had it in the past)
Insurance coverage for genetic counseling/testing
Sharing Genetic Test Information
- A helpful information sheet to give family members when sharing your genetic test results
- Release of Information (ROI) form: A form to allow others access to your genetic test results and information from your visit in our program
Informational Brochures about genetic testing
- Direct-To-Consumer (DTC) vs. Clinical Genetic Testing brochure
- Variants of Uncertain Significance (VUS) Brochure
- Germline vs. Tumor Testing Brochure
Before your genetic counseling appointment
- Click here to watch a brief video.
Registries to receive updates on genetic testing information and participate in research studies to better understand and prevent cancer:
- Prospective Registry of MultiPlex Testing (PROMPT)
- PROMPT brochure
- Inherited Cancer Registry (iCARE): For individuals who carry a known pathogenic variant (mutation) in a hereditary cancer risk gene. If you have been seen in our program, please use our code EXT-SVC when you register!
- Facing Our Risk for Cancer Empowered (FORCE): Provides a support network, available research study information and useful educational information on BRCA1, BRCA2 and other genes that involve a hereditary risk for breast cancer
- About FORCE brochure
- The National Society of Genetic Counselors (NSGC): Information on genetic counselors, who we are and what we do. If you don’t live in the state of Indiana or Illinois (we offer telemedicine!) and are trying to locate a genetic counselor near you, Find a Genetic Counselor.