Genetic Counseling Frequently Asked Questions

Genetic Counseling for Patients

What are the goals of the GC Shared Resource?

These are the two main goals of the GC Shared Resource:

  • To provide cancer genetics expertise and genetic counseling services and interventions
  • To support the scientific research and objectives of the Cancer Center

What services does the GC Shared Resource provide?

GCSR Scope

Support/collaboration on any project related to hereditary cancer syndromes

  • Project Design/Clinical Trial Initiation
  • Recruitment/Data Collection
  • Data Analysis & Management
  • Follow Up

Project Design/Clinical Trial Initiation

  • Project feasibility
  • Study consultation/development
  • Genetic/high risk expertise
  • Grant writing assistance
  • IRB submission
  • Pilot data collection

Recruitment/Data Collection

  • Coordinator support (3+ FTEs)
  • Patient identification and consent
  • Data tracking
  • Specimen collection and coordination
  • Regulatory help

Data Analysis & Management

  • Information coordinator/genetic data expertise
  • Data use/requests: RSR/CCR databases with genetic testing dating back to 1995
  • Links to UPDB, EDW, UCR

Follow Up

  • Write up and publication
  • Return of research results to patients
  • Grant support

Our goal is to identify the resources you need to develop a successful project

  • Identify and recruit participants for genetic research
  • Provide expertise regarding study design and ethical, legal, and social issues (ELSI) critical to genetic research
  • Implement genetic counseling interventions
  • Oversee and lead the return of clinically actionable findings
  • Provide research coordination, regulatory and IRB help for hereditary cancer projects
  • Access to large hereditary cancer database for research use

Planning and appropriate consenting can minimize possible negative consequences of genetic testing. We encourage investigators to consult the GC Shared Resource in the planning stages of a project to ensure optimal design of studies and adherence to ethical principles.

Who staffs the GC Shared Resource?

The GC Shared Resource is staffed by licensed, board-certified genetic counselors, research coordinators, data managers, and other research staff.

What is the cost for using the GC Shared Resource?

The cost of the GC Shared Resource is determined based on study need or request. Many projects requiring pilot data or initial project set up may be provided at no charge. For studies requiring a genetic counseling intervention, we estimate genetic counseling effort at a set rate of patients/year per FTE.

What are some examples of the GC Shared Resource contributions to science?

Here is a summary of some recent major scientific discoveries facilitated by the GC Shared Resource and the Shared Resource services used:

  • Delivering counseling by telephone is an effective strategy for extending the reach of genetic counselors to underserved areas.
    • Identified participants meeting testing guidelines
    • Delivered study-specific, telephone-based genetic counseling interventions
    • Interpreted data and prepared manuscript
      Citations: J Clin Oncol 2016; J Oncol Practice 2016; Cancer Epidemiol Behavior Prev 2016; J Natl Cancer Inst 2014
  • Risk assessment paired with genetic testing is more impactful than family history-based risk assessment for melanoma alone.
    • Identified cohorts with CDKN2A mutations and familial melanoma families with similar risk but no identifiable genetic etiology
    • Developed standardized protocol for delivering family history- and genetic-based risk assessment
    • Modified protocol for children and adolescents
    • Interpreted data and prepared manuscript
      Citations: Transl Beha Med 2018; J Genet Couns 2018; J Community Genet 2016; J Beh Med 2015; J Beh Med 2015
  • Sulindac and erlotinib reduce development of polyps in the rectum/pouch and duodenum of individuals with familial adenomatous polyposis (FAP).
    • Identified and recruited patients with FAP
    • Coordinated molecular confirmation of diagnoses
    • Expanded families to identify other relatives with FAP and offer participation
      Citations: JAMA Oncol 2018; JAMA 2016

Governance

HCI Senior Director Oversight
Tracy Onega PhD, MS
Theresa Werner, MD

 

Faculty Advisory Committee Chair
Saundra Buys, MD

Faculty Advisory Committee Members
Deborah Neklason PhD
Matthew Firpo PhD
Erin Rothwell MS, PhD
Nicola Camp PhD
Yelena Wu PhD
Afaf Osman MD
Jennifer McNeer MD, MSCI
Alejandro Sanchez MD