Your Genes: One Size Doesn't Fit All

In the September 2017 issue of JNCCN, Margaret Tempero, MD, discussed the juxtaposition of the constraints on the genetic service workforce and the increasing demand for genetic information related to cancer risk and diagnosis.1 The National Society of Genetic Counselors (NSGC) supports her call to action that healthcare providers must help individuals navigate the increasingly complex and dynamic landscape of genetics and cancer risk. The goal of this commentary, however, is to clarify misconceptions about what she noted as an increasing workforce shortage in genetic counseling and, in fact, about the genetic counseling profession itself.

Workforce shortages and barriers to care are common in many specialties in healthcare.2 However, genetic counseling is one of the fastest growing professions and is projected to reach an equilibrium of 1 patient-facing clinical genetic counselor (GC) per 100,000 people within 5 years.3,4 Additionally:

  1. GCs are available. Genetic counselors can be found in all 50 states and Canada. The NSGC has provided a Web site (www.findageneticcounselor.com) on which patients and healthcare providers can search for GCs by various criteria, including specialty and geographic location. Genetic counseling is also available via telephone or telemedicine nationwide. Although genetic counseling is generally covered by healthcare plans and is frequently required before genetic testing, health plans could significantly improve access to GCs by credentialing them to ensure that there are robust networks of GCs who can be easily identified through online directories.

  2. GCs can see patients in a timely fashion. The NSGC 2016 Professional Status Survey (N=3,005) found that 38% of patients could get an appointment with a GC within 1 week and 52% within 2 weeks. The NSGC also commissioned an informal survey earlier this year of cancer GCs specifically. Results showed that 80% of respondents (N=450) are able to accommodate STAT patients (typically those with a recent cancer diagnosis who are pending treatment decisions) in 1 to 3 days.

  3. GCs are innovating for a changing healthcare landscape. NSGC's strategic plan prioritizes improved patient access to genetic services by addressing GC efficiency and promoting the use of varied service delivery models. GCs nationwide are expanding service delivery models, such as telemedicine, telephone, and group sessions. Additionally, they are pioneering other novel efficiency efforts, including streamlined workflows, implementation of electronic collection of family history and other technologies, and the use of ancillary support staff, such as Genetic Counseling Assistants.5,6 All of this will allow GCs more time to focus on patient care. GCs are also collaborating with non-genetics healthcare providers to educate and support them as they offer risk assessment and genetic testing. NSGC is not only evaluating the implementation of traditional and novel service delivery models, but also examining outcomes measures to ascertain the effectiveness of these models.

  4. The GC workforce is growing. NSGC has a thoughtful and strategic plan to increase the size of the GC workforce over the next 3 years. This includes increasing the number of new and the size of existing genetic counseling training programs, and enhancing the network of clinical supervisors required to train the next generation of GCs. The number of new genetic counseling training programs is higher than predicted, with at least 19 new programs in development. These will probably allow for more new GCs than previously anticipated by the workforce study.7

High-quality outcomes, accessibility, and timely care for patients remain a primary focus for GCs and oncology providers alike. All healthcare providers, regardless of specialty, should keep this common goal in sight. NSGC believes that GCs should be involved, directly or indirectly, in the delivery of cancer genetics services to all patients, and recognizes that sometimes our role will be to empower, educate, and support other types of healthcare providers as they offer genetic services to the many patients who need them. At the same time, studies have shown that non-genetics healthcare providers are more likely to order genetic testing incorrectly and/or misinterpret genetic test results for hereditary cancer.810 Therefore, delivery of genetic services must be a collaborative effort to ensure high-quality patient outcomes.

NSGC is supporting efforts toward building efficient and effective service delivery models to provide quality hereditary cancer risk assessment and testing to the masses. We welcome collaboration in these efforts.

References

  • 1.

    TemperoM. Your genes: getting the best fit. J Natl Compr Canc Netw2017;15:1083.

  • 2.

    Association of American Medical Colleges. The Complexities of Physician Supply and Demand: Projections From 2015 to 2030 (2017 Update). Available At: https://aamc-black.global.ssl.fastly.net/production/media/filer_public/a5/c3/a5c3d565-14ec-48fb-974b-99fafaeecb00/aamc_projections_update_2017.pdf. Accessed October 26 2017.

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  • 3.

    U.S. Department of Labor. The 10 Fastest Growing Jobs. Available at: https://blog.dol.gov/2015/03/15/the-10-fastest-growing-jobs. Accessed October 26 2017.

    • Search Google Scholar
    • Export Citation
  • 4.

    The National Society of Genetic Counselors. Genetic Counselor Workforce Initiatives. Available at: http://www.nsgc.org/page/genetic-counselor-workforce-initiatives-532. Accessed October 26 2017.

    • Search Google Scholar
    • Export Citation
  • 5.

    CohenSAMarvinMLRileyBD. Identification of genetic counseling service delivery models in practice: a report from the NSGC Service Delivery Model task force. J Genet Couns2013;22:411421.

    • Search Google Scholar
    • Export Citation
  • 6.

    BuchananAHRahmAKWilliamsJL. Alternative delivery models in cancer genetic counseling: a mini-review. Front Oncol2016;6:120.

  • 7.

    The Association of Genetic Counseling Program Directors. Program Directory. Available at: https://agcpd.org/ProgramDirectory.aspx. Accessed October 26 2017.

    • Search Google Scholar
    • Export Citation
  • 8.

    ChambersCVAxell-HouseDBMillsG. Primary care physicians' experience and confidence with genetic testing and perceived barriers to genomic medicine. J Fam Med2015;2:1024.

    • Search Google Scholar
    • Export Citation
  • 9.

    HaidleJLSternanDLDickersonJA. Genetic counselors save costs across the genetic testing spectrum. Am J Manag Care2017;23(10Spec No):SP428430.

    • Search Google Scholar
    • Export Citation
  • 10.

    KurianAWLiYHamiltonAS. Gaps in incorporating germline genetic testing into treatment decision-making for early-stage breast cancer. J Clin Oncol2017;35:22322239.

    • Search Google Scholar
    • Export Citation

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Mary E. Freivogel, MS, CGC, is immediate Past President of the National Society of Genetic Counselors and Senior Director of Clinical Operations at Invision Sally Jobe Breast Centers in the Denver area. In 2009, she was hired as the first genetic counselor at this organization, which now has a robust Genetic Services department with 3 genetic counselors, 1 nurse practitioner, and 1 medical assistant.

Ms. Freivogel has led the implementation of processes that efficiently identify patients at high-risk for breast cancer and communicate this risk to these patients and their referring physicians. She has presented information at various professional meetings and published on this topic in national peer-reviewed journals. She is actively involved with the National Accreditation Program for Breast Centers and the National Consortium of Breast Centers, as well as the American Cancer Society, with regard to breast cancer risk assessment efforts. She is passionate about the genetic counseling profession and believes that genetic counselors have an infinite number of talents and unique contributions to provide to breast cancer risk assessment efforts and countless other areas.

The ideas and viewpoints expressed in this commentary are those of the author and do not necessarily represent any policy, position, or program of NCCN.

Stephanie A. Cohen, MS, LCGC, is a board-certified and licensed genetic counselor at St. Vincent Hospital in Indianapolis, Indiana. She earned her MS degree in genetic counseling at the University of Michigan. Ms. Cohen's current focus of expertise is cancer genetics. In this role, she developed a stand-alone Cancer Genetics Risk Assessment program that now includes 3 full-time genetic counselors and a genetic counseling assistant. She has been working to improve access to cancer genetic services by implementing a collaborative process, using a network of genetic counselor extenders throughout the St. Vincent Health system across the state of Indiana.

She has an appointment as Adjunct Assistant Professor at Indiana University and is active in training genetic counseling students by serving as a clinical supervisor, research advisor, and coinstructor for a graduate level cancer genetics course. She is active in several groups within the National Society of Genetic Counselors, currently acting as chair of the Service Delivery Model subcommittee. She has multiple publications in the field of cancer genetics and genetic counseling service delivery.

References

  • 1.

    TemperoM. Your genes: getting the best fit. J Natl Compr Canc Netw2017;15:1083.

  • 2.

    Association of American Medical Colleges. The Complexities of Physician Supply and Demand: Projections From 2015 to 2030 (2017 Update). Available At: https://aamc-black.global.ssl.fastly.net/production/media/filer_public/a5/c3/a5c3d565-14ec-48fb-974b-99fafaeecb00/aamc_projections_update_2017.pdf. Accessed October 26 2017.

    • Search Google Scholar
    • Export Citation
  • 3.

    U.S. Department of Labor. The 10 Fastest Growing Jobs. Available at: https://blog.dol.gov/2015/03/15/the-10-fastest-growing-jobs. Accessed October 26 2017.

    • Search Google Scholar
    • Export Citation
  • 4.

    The National Society of Genetic Counselors. Genetic Counselor Workforce Initiatives. Available at: http://www.nsgc.org/page/genetic-counselor-workforce-initiatives-532. Accessed October 26 2017.

    • Search Google Scholar
    • Export Citation
  • 5.

    CohenSAMarvinMLRileyBD. Identification of genetic counseling service delivery models in practice: a report from the NSGC Service Delivery Model task force. J Genet Couns2013;22:411421.

    • Search Google Scholar
    • Export Citation
  • 6.

    BuchananAHRahmAKWilliamsJL. Alternative delivery models in cancer genetic counseling: a mini-review. Front Oncol2016;6:120.

  • 7.

    The Association of Genetic Counseling Program Directors. Program Directory. Available at: https://agcpd.org/ProgramDirectory.aspx. Accessed October 26 2017.

    • Search Google Scholar
    • Export Citation
  • 8.

    ChambersCVAxell-HouseDBMillsG. Primary care physicians' experience and confidence with genetic testing and perceived barriers to genomic medicine. J Fam Med2015;2:1024.

    • Search Google Scholar
    • Export Citation
  • 9.

    HaidleJLSternanDLDickersonJA. Genetic counselors save costs across the genetic testing spectrum. Am J Manag Care2017;23(10Spec No):SP428430.

    • Search Google Scholar
    • Export Citation
  • 10.

    KurianAWLiYHamiltonAS. Gaps in incorporating germline genetic testing into treatment decision-making for early-stage breast cancer. J Clin Oncol2017;35:22322239.

    • Search Google Scholar
    • Export Citation

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