Original Research

Journal of Genetic Counseling

, Volume 20, Issue 3, pp 314-322

First online:

Barriers in Identification and Referral to Genetic Counseling for Familial Cancer Risk: The Perspective of Genetic Service Providers

  • Sharon J. RolnickAffiliated withHealthPartners Research Foundation Email author 
  • , Alanna K. RahmAffiliated withInstitute for Health Research, Kaiser Permanente
  • , Jody M. JacksonAffiliated withHealthPartners Research Foundation
  • , Larissa NekhlyudovAffiliated withDepartment of Population Medicine, Harvard Medical School and Department of Medicine, Harvard Vanguard Medical Associates
  • , Katrina A. B. GoddardAffiliated withCenter for Health Research, Kaiser Permanente Northwest
  • , Terry FieldAffiliated withMeyers Primary Care Institute
  • , Catherine McCartyAffiliated withMarshfield Clinic Research Foundation
  • , Cynthia NakasatoAffiliated withKaiser Permanente Center for Health Research
  • , Douglas RoblinAffiliated withCenter for Health Research/Southeast
    • , Christopher P. AndersonAffiliated withHealthPartners Research Foundation
    • , Rodolfo ValdezAffiliated withOffice of Public Health Genomics, Office of Surveillance, Epidemiology and Laboratory Services, Centers for Disease Control and Prevention

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The purpose of this study was to obtain genetic counselors’ perspectives about the identification of appropriate patients and barriers to referral of high-risk patients for cancer genetic counseling services. Genetic service providers from eight integrated health systems were surveyed. Data analysis included descriptive statistics. Twenty-eight of 40 potential participants responded (70%). Referrals for familial cancer risk assessment overwhelmingly came from providers (89%); only 10% were self-referrals. Use of guidelines to assist providers with referral was reported by 46% of the respondents. Genetic service providers perceived patient barriers to seeking genetic counseling after referral included: risk evaluation viewed as a non-priority (72%), concerns about impact on insurability (52%), distance to appointments (48%), lack of insurance (44%), lack of patient/provider knowledge about the value of genetic counseling (36%), discouragement by family members (28%), and fear (20%). The best approaches suggested by respondents to increase appropriate referrals were attending meetings and giving presentations to oncologists, surgeons, primary care and gynecologists. The genetic service providers reported several barriers to the referral and use of genetic counseling. This finding is consistent with current literature from the providers’ perspective. Our survey adds the genetic service providers’ perspective and identifies areas of opportunity for further research and intervention as few of the perceived barriers are being addressed through current educational efforts.


Genetic counseling Genetic predisposition to disease Genetic screening Neoplasms Referral and consultation