Results of the Genetic Counselor SARS‐CoV‐2 Impact Survey from the National Society of Genetic Counselors: Progress and penalty during the COVID‐19 pandemic

Abstract

The Genetic Counselor SARS‐CoV‐2 Impact Survey (GCSIS) describes the impact of the pandemic on genetic counselors and genetic counseling services. With this information, the National Society of Genetic Counselors (NSGC) can better: (1) support advocacy and access efforts for genetic counseling services at both federal‐ and state‐level; (2) promote effective billing and reimbursement for genetic counseling services provided via telemedicine; and (3) make decisions about how to best support genetic counselors. The survey was hosted on a novel data collection and analysis platform from LunaDNA and was open to all genetic counselors (n = 5,531 based on professional society membership). Survey response rate was approximately 3.8% (n = 212/5,531), with a demographic distribution broadly representative of the North American genetic counseling field. Genetic counselors remained largely employed, providing genetic counseling services throughout the pandemic, although almost one in five respondents (17%, n = 35/211) reported experiencing some degree of pandemic‐related financial hardship. Nearly all respondents (90%, n = 104/115) transitioned, at least in part, to remote work settings, with about half (47%. n = 88/189) reporting restrictions in the care they were able to provide. These shifts came at a cost: existing gaps in Medicare status for genetic counselors and attendant reimbursement concerns led to uncertainty about whether genetic counselors' work will be reimbursed. Outside of work, caregiving responsibilities increased for 34% (n = 74/212) of respondents. The results of the GCSIS amplify the importance of federal‐ and state‐level advocacy efforts for genetic counselors and their employers. They also highlight the impact of broader cultural intransigence on our majority‐female profession. During the pandemic, genetic counselors continued to provide care, but without consistent financial support or expectation of reimbursement. The ability to attract and retain talented professionals to the genetic counseling field will hinge on the success of continued advocacy efforts.

An examination of psychosocial and professional effects of the COVID‐19 pandemic on genetic counselors

“…Overall, this study recapitulates data regarding changes to professional aspects of genetic counseling practice since the spring of 2020 and elaborates on previously identified non‐professional challenges experienced by genetic counselors (Bergstrom et al, 2021; MacFarlane et al, 2021; Mauer et al, 2021; Mills et al, 2021; Mueller et al, 2021; Pan et al, 2021; Rezich et al, 2021; Shannon et al, 2021; Turchetti et al, 2021; Wessels et al, 2021). As many of the qualitative responses showed, however, the distinction between professional and non‐professional aspects of life for genetic counselors can be ambiguous.…”

“…The most appealing aspects identified were the ability to work from home, the innovative approach to health care, increasing access to care, decreased patient travel time, customer experience, ability to engage in social distancing, decreased personal travel time, and the use of technology. Pan et al (2021) described both professional and personal challenges experienced by genetic counselors during the COVID-19 pandemic. Besides changing service delivery models, their survey found 17% of participants experienced some financial hardship with some reporting decreased compensation and increased care-giving responsibilities.…”

“…Pan et al (2021) described both professional and personal challenges experienced by genetic counselors during the COVID‐19 pandemic. Besides changing service delivery models, their survey found 17% of participants experienced some financial hardship with some reporting decreased compensation and increased care‐giving responsibilities.…”

Genetics providers’ experiences using telehealth: A grounded theory approach

“…New research has emerged because of the pandemic which considers the place of genetic services in telehealth and is a welcome addition to the growing literature of genetic telehealth.These studies include research of the before and after telehealth experiences of genetic counselors in SARS-CoV-2(Mills et al, 2021), telehealth experiences across specialties in Nebraska(Rezich et al, 2021), the U.S. and Canada(Ma et al, 2021) and more. A recent SARS-CoV-2 impact study conducted by the National Society of Genetic Counselors SARS-CoV-2 Impact Survey Working Group Survey identified a significant shift in patient care provided via telehealth, accompanied by pitfalls in reimbursement for services(Pan et al, 2021). Additional research is needed to explore issues in payment for genetics work and counseling delivery.The majority of this study's sample is genetic counselors.…”