Genetic Counselors' Role in Oncofertility 

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Oncofertility Educational Resources for Genetic Counselors

Oncofertility Patient Resources

Refer a Patient to a Fertility Preservation Specialist

Billing & Insurance Information


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Genetic Counselors' Role in Oncofertility

The American Society of Clinical Oncology recommends that members of the oncology health care team, including genetic counselors, discuss the effects of cancer treatment on future fertility with all patients of reproductive age (and parents/guardians of minors). The Oncofertility Consortium provides educational resources for genetic counselors to assist with fertility preservation communication strategies and facilitation of options discussions with patients. 

In addition to discussing fertility preservation options with patients of reproductive age with recent cancer diagnoses, genetic counselors have a unique opportunity to discuss fertility preservation options with patients who are at increased risk of developing cancer, due to a hereditary cancer syndrome or significant family history of cancer, but do not currently have a cancer diagnosis. It is important to discuss fertility preservation at this time due to the increased risk of developing a young-onset cancer as well as the proven cancer risk-reducing surgical options available to patients that impact fertility (e.g. prophylactic bilateral salpingo oophorectomy).

Volk et al. (2012)[1] conducted a research study to estimate genetic counselors’ attitudes, knowledge, and discussion of fertility preservation in referred breast and ovarian cancer patients, including BRCA1 and BRCA2 mutation-positive patients. A total of 218 genetic counselors participated in the research study, citing an average of 15.5 breast or ovarian cancer patients per month and 2.4 BRCA1/2 mutation-positive patients per month. Of these, more than 50% had a basic understanding of embryo cryopreservation, egg cryopreservation, ovarian tissue cryopreservation, and emergency IVF, and were aware of fertility preservation research. Several study themes emerged, including the general belief that fertility preservation discussions are important and part of the role of the genetic counselor. Similarly, most genetic counselors believe PGD should be discussed with every BRCA1/2 mutation positive patient[2]. The Ethics Committee of the ASRM has also stressed the importance of involving an experienced genetic counselor before patients undertake PGD, given the complexity of the scientific, psychological, and social issues involved in this arena[3].

Women with BRCA1/2 mutations have expressed a strong desire for assistance with the decision-making in oncofertilty and PGD and report the need for health care professionals with expertise across a variety of topics including BRCA1/2 risk management, fertility, and psychosocial counseling [4]- three areas in which genetic counselors possess expertise. In fact, women with BRCA1/2 mutations identified genetic counslors as the preferred professionals with whom to discuss reproductive options [5].


Learn More About Genetic Counselors' Role in Oncofertility

Learn More About Oncofertility Communication Strategies for High Risk Patient Populations

Fertility Preservation Clinical Information


Non-Malignant Conditions

Genetic counselors practicing in pediatric and adult clinical settings may provide care to patients diagnosed with non-malignant conditions which may threaten fertility. Genetic counselors are in a position to discuss the effects of genetic conditions on fertility as well as available fertility preservation options and make appropriate referals. Learn more about the non-malignant conditions (or treatments) that threaten fertility as well as the fertilty preservation options available to patients.

The Center for Reproductive Health After Disease

Non-Malignant Condition Summaries

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Implement a Fertility Preservation Program

The Oncofertility Consortium and National Physicians Cooperative provide resources to assist providers intereted in implementing a fertility preservation program. 

Implement a Fertility Preservation Program


Subscribe to the Oncofertility Consortium Blog

Stay up to date on fertility preservation news, research break-throughs, and publications.

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More Ways to Get Involved

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Resources for Genetic Counselors

The Oncofertility Decision Tool Web Portal

The Decision Tool Web Portal is a library of existing oncofertility decision aids designed to help genetic counselors stay up to date on fertility preservation techniques and technology; learn communication strategies for discussing fertility preservation options with patients of all ages and their family members; and access print and online patient educational resources. Many tools are specific to the high risk patient population, and therefore are particularly helpful for genetic counselors who may be the first health care provider with an opportunity to address future fertility concerns with young women concerned about future cancer risk. 


Access the Oncofertility Decision Tool Web Portal


Oncofertility Education

The Oncofertility Consortium® offers many educational resources for genetic counselors in addition to our web portal, such as virtual grand rounds on young adult survivorship issues, clinical information for reproductive specialists, fertility preservation pocket guides, and a guide to fertility preservation for high risk patients.


Virtual Grand Rounds

Fertility Preservation Clinical Information

Provider Pocket Guides to Fertility Preservation

Fertility Preservation Guide for High Risk Patients


Refer a Patient

To refer a patient for a fertility preservation consultation, call the Oncofertility Consortium® FERTline at 312-503-FERT or 866-708-FERT and print out this flyer to give to your patient.



Patient Resources

The Oncofertility Consortium® works with many advocacy organizations and support groups to provide young cancer patients with support and assistance regarding fertility, reproductive health, and quality of life throughout survivorship. You may be interested in connecting patients with community and online resources.


Community Resources

Online Resources

Patient Fact Sheets


Billing & Insurance Information

Patients are often concerned about the cost of fertility preservation procedures. To learn more about oncofertility and insurance coverage, read Incorporating Insurance Education into the Fertility Preservation Process from Oncofertility Communication (2014) or check out the Oncofertility Consortium® blog post on Insurance Coverage for Fertility Preservation.

The Oncofertility Consortium also provides billing resources for providers, including:

  • Letter of Medical Necessity Template
  • Letter of Appeal Template
  • V Codes for Fertility Preservation
  • ASCO and ASRM guidelines


Billing & Insurance Resources


Do you have patients interested in fertility preservation and in need of financial aid? Fertile Action can help! Fertile Action offers financial aid for women with recent cancer diagnoses interested in fertility preservation. The advocacy organization provides additional financial information and resources, as well as online support groups for patients.


More Ways to Get Involved

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[1] Volk, A., Aufox, S., Fallen, T., Beaumont, J., & Woodruff, T. K. (2012). Genetic Counselor Attitudes, Knowledge and Discussions of Fertility Preservation in the Hereditary Breast and Ovarian Cancer Clinc. Northwestern University. Unpublished manuscript.

[2] Morrison, S., Hiller, E., Gabree, M., & Roche, P. (2010). Opinions, knowledge, and attitudes of genetic counselors in the United States about preimplantation genetic diagnosis for BRCA1/2 mutation carriers. Brandeis University. Unpublished manuscript.

[3] Ethics Committee of American Society for Reproductive Medicine. (2013). Use of preimplantation genetic diagnosis for serious adult onset conditions: a committee opinion. Fertil Steril, 100(1), 54-57. 

[4] Quinn, G. P., Vadaparampil, S. T., Tollin, S., Miree, C. A., Murphy, D., Bower, B., & Silva, C. (2010). BRCA carriers' thoughts on risk management in relation to preimplantation genetic diagnosis and childbearing: when too many choices are just as difficult as none. Fertil Steril, 94(6), 2473-2475. 

[5] Quinn, G., Vadaparampil, S., Wilson, C., King, L., Choi, J., Miree, C., & Friedman, S. (2009). Attitudes of high-risk women toward preimplantation genetic diagnosis. Fertil Steril, 91(6), 2361-2368. 

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