The dawn of consumer‐directed testing

Genetic counseling careers continue to evolve, yet there remains a lack of information about hiring trends in the genetic counseling profession. In this study, job advertisements in the United States and Canada were analyzed, using the National Society of Genetic Counselors (NSGC) Job Connections and the American Board of Genetic Counseling (ABGC) eBlasts from 2014 to 2016 to appraise job roles, qualifications, settings, specialties, and type. NSGC had 1875 advertised openings from 2014 to 2016, while ABGC had 373 advertised openings. Jobs containing a “counseling” role increased as a percentage from 2014 to 2016 when advertised by NSGC (χ2 = 25.52, p < 0.000001) but decreased each year from 2014 to 2016 as a percentage when advertised through ABGC (χ2 = 14.29, p = 0.0008). In the ABGC job postings, it was noted that 36% of job postings were advertised for other specialties (not solely cancer, pediatric, or prenatal) in 2014, and increased to 67% in 2016 (χ2 = 10.09, p = 0.02). Examining the job specialties posted by ABGC and NSGC, several new or unique roles were found in the job advertisements such as ophthalmology counselor, variant curator, rare diseases information specialist, and clinical policy analyst. Roles for temporary, contract or fellowship positions are possibly becoming more common, along with small upturns in positions that are off‐site or remote. In analyzing the changing workforce, there was a statistically significant decrease identified in jobs advertised by NSGC in the laboratory setting from 28% in 2014 to 17% in 2016 (χ2 = 24.12, p = 0.000024). This information on the evolving career of genetic counseling is valuable for the current workforce and training programs as they adapt with the changing landscape of the profession.

Section: Discussionmentioning

confidence: 92%

“…where experienced genetic counselors are moving into newer roles and leaving openings in clinic settings, or patients are becoming more aware of genetic information due to things such as direct to consumer testing (Ramos & Weissman, 2018).…”

Section: Job Setting and Specialtymentioning

confidence: 99%

Genetic counseling job market in the United States and Canada: An analysis of job advertisements 2014–2016

Burns

Swanson

Hoskovec

et al. 2019

“…These new kinds of counseling relationships have raised questions about conflicts of interest (Stoll, Mackison, Allyse, & Michie, ). In addition, a new class of so‐called ‘consumer‐initiated’ testing has become available, granting access to genetic testing with indirect or minimal involvement of a healthcare provider (Ramos & Weissman, ). These developments place new responsibilities on genetic counselors to serve as intermediaries between the commercial interests of for‐profit laboratories and patients seeking testing.…”

Section: An Adapted Ethical Frameworkmentioning

confidence: 99%

An ethical framework for genetic counseling in the genomic era

Jamal

Schupmann

Berkman

2019

Since the inception of their profession, genetic counselors have helped patients and families adapt to varied circumstances and make decisions influenced by powerful emotions. In doing so, they have had to reconcile ethical principles with the diverse values of their patients. While this challenge is not unique in medicine, it has preoccupied genetic counselors disproportionately because such a large share of genetic counseling work involves nuanced discussions about reproductive choices and the impact of difference and disability on people's lives. Historically, the profession of genetic counseling has relied on 'nondirectiveness' to guide practice. Nondirectiveness has been defined in various ways: as a counseling method designed to be value-neutral (Caplan, 1993); as the prevention of coercion or persuasion in genetic counseling(Hamby & Biesecker, 2000); as a commitment not to impose one's own values on patients (Fine, 1993); and as a counseling strategy that supports autonomous decision-making (Bartels, LeRoy, McCarthy, & Caplan, 1997). The original ethical justification for practicing nondirectively was to respect individual patient autonomy, construed largely as non-interference in patient decision-making (Stern, 2009). This ethos grew out of a genuine respect for persons, particularly concerning reproductive choice and disability rights. The profession's emphasis on nondirectiveness has also been understood as an effort to distance genetic counseling from the morally fraught history of eugenics (Resta, 1997).

“…Genetic counselor training and resources are needed for those who want to incorporate this type of consultation into their current practice or into a new service provision model (Hooker et al, 2014;Ramos & Weissman, 2018;Sturm et al, 2018). Currently, few counselors offer this service, according to the NSGC Find A Genetic Counselor Resource.…”

Section: Developing Training and Resourcesmentioning

confidence: 99%

Genetic counseling for consumer‐driven whole exome and whole genome sequencing: A commentary on early experiences

Schmidt¹,

Maas²,

Altmeyer³

2019

Counseling after consumer‐driven whole exome sequencing (WES) and whole genome sequencing (WGS) presents challenges for genetic counselors as availability of this testing increases. There are no standard practice guidelines and limited resources for genetic counselors in this area, but consumer demand for counseling and data interpretation exists and is likely to grow along with testing opportunities. In this paper, we comment upon our experiences as three independent, private practice genetic counselors who have provided counseling services for clients with WES/WGS reports and data. In our counseling experience, we have encountered three main types of client motivation for seeking testing and counseling: generally healthy individuals who are curious to learn more about their genomic data, individuals with family histories of various conditions, and/or who want to better understand specific disease risks, and individuals who are ill, undiagnosed and searching for an understanding of their ailments. Research is needed to better understand client motivations for undergoing testing and counseling, as well outcomes of counseling sessions. In addition to improvements in variant identification, classification and bioinformatics, there is a need for practice guidelines, counseling resources, service delivery models, and efforts to increase awareness and access to genetic counseling services.