Factors Which Impact the Delivery of Genetic Risk Assessment Services Focused on Inherited Cancer Genomics: Expanding the Role and Reach of Certified Genetics Professionals

Abstract

There is tremendous excitement about the promise of new genomic technologies to transform medical practice and improve patient care. Although the full power of genetic diagnosis has not yet been realized, paradigms of clinical decision-making are changing. In fact, recent policy level changes to promote genetic counseling by certified genetics professionals (GP) such as genetic counselors and clinical geneticists, are occurring at both the payer and state level. However, there remain opportunities to develop policies within the United States to: 1) enhance the access to the limited workforce of GPs; 2) revise reimbursement schemes such that costs to deliver these services may be recouped by institutions with GPs; and 3) protect against the potential for discrimination based on genetic information. Although many of these issues predate advances in genomic technologies, they are exacerbated by them, with increasing access and awareness as costs of testing decrease. Consequently, evolving shifts in national policies poise GPs to serve as a hub of information and may be instrumental in facilitating new models to deliver genetics-based care through promoting academic-community partnerships and interfacing with non-GPs. As we acknowledge the potential for genomics to revolutionize medical practice, the expertise of GPs may be leveraged to facilitate incorporation of this information into mainstream medicine.

Factors associated with genetic counseling and BRCA testing in a population-based sample of young Black women with breast cancer

“…Another potential factor contributing to the relatively high rate of BRCA testing observed in our study could be the influence of multiple direct-to-consumer marketing campaigns in Florida [26-28]. Additionally, marketing to community-based physicians by commercial laboratories may contribute to increasing numbers of clinicians across disciplines who order genetic tests [29,30].…”

Care delivery considerations for widespread and equitable implementation of inherited cancer predisposition testing

“…Clinical genetic service delivery varies by institution and by the types of providers who deliver these specialized services at various community hospitals or academic institutions. 50, 51, 70, 118 Based on cross-sectional data, genetic service providers are more likely than other types of healthcare practitioners to provide patients with written summary information they can share with their family members; and observational studies suggest that family sharing letters increase family communication of test results and/or relatives’ use of genetic services. 119, 120 Furthermore, one study of BRCA carriers reported lower testing rates among relatives treated at public hospitals compared to large cancer centers.…”

Trends in Unmet Need for Genetic Counseling Among Children With Special Health Care Needs, 2001–2010

“…The data do not distinguish counselors working full or part time, counselor's area of practice, or counselors working via telehealth technology, which may extend genetic counseling capacity in areas with few on-theground counselors. 34 Periodic surveys of members of the National Society of Genetic Counselors have shown an overall trend toward a decreasing percentage of genetic counselors providing direct services to pediatric patients. 33 On the other hand, providers other than genetic counselors, such as geneticists and general pediatricians, may provide some genetic counseling, and our measure of supply does not account for their services.…”