Defining the role of a genetic counselor within pediatric hematology and oncology comprehensive care teams: Perspectives of the provider team and patients

Abstract

As genetic testing is increasingly integrated into medical care, the genetic counselor (GC) has emerged as a key member of multidisciplinary (MD) teams. Prior research has demonstrated the importance of role clarification when subspecialties are introduced to these teams given the potential differences in team member expectations regarding the division of responsibilities in clinic. To assess perceptions of a GC's role in four pediatric hematology/oncology clinics, Accreditation Council for Genetic Counseling (ACGC) competencies were used to develop two separate surveys for providers and patients and their caregivers. Providers (n = 25) perceived roles related to genetic expertise and coordination of care to be primarily the role of a GC significantly more often than psychosocial roles (p < .0001). Several potential GC roles were perceived as a shared role or the role of another provider, such as eliciting psychosocial history. Patients/caregivers (n = 70) perceived genetic–centric roles as significantly more important than roles related to coordination of care (p = .03) and psychosocial skills (p < .0001). Our findings from a pediatric specialty department suggest that GCs may maximize their potential in MD clinics by functioning as genetic subject matter experts with care coordination responsibilities related to genetic testing. Further communication between team members may be indicated to clarify the division of responsibilities.

Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda

“…Our results suggest that genetic counselling is fundamental and a requisite to the return of GGR results, but there is a major weakness in Uganda because the necessary cadre of professionals is lacking. Genetic counsellors are essential in ensuring that research participants adequately understand what the study entails and the implications of their participation [1,[31][32][33][34]. Thus, there is need for human capacity development for the ethical conduct of GGR.…”

Evaluation of barriers to referral for cancer predisposition syndromes in pediatric oncology patients in the United States

“…While our data suggest many surveyed providers consult their genetics colleagues, there is room to improve. A recent survey of pediatric HCP in a multidisciplinary oncology clinic found that providers perceive many genetic counselor roles as shared and suggests the role of genetic counselors within a multidisciplinary team may require clarification of expectations to prioritize their time and effort (Hudson et al., 2019). Genetic counselors offer a valuable set of skills to address both physician and patient‐centered barriers, and the utilization of their skills has proven beneficial in similar settings.…”

Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda

“…This is necessitated by its potential to reduce or mitigate negative out comes and misconceptions associated with GGR. This is because genetic counsellors aid in facilitating individuals to understand what the research involves before accepting to participate and availing results in a simpli ed way in a bid to facilitate participants and, or communities who may not have the capacity to understand the meaning of the ndings and the associated implications [1,[29][30][31][32]. There is need for capacity development for ethical conduct of GGR including aspects like genetic counselling.…”