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Journal of Genetic Counseling

, Volume 21, Issue 2, pp 345–352 | Cite as

Family Physicians’ Awareness and Knowledge of the Genetic Information Non-Discrimination Act (GINA)

  • Amanda L. LaedtkeEmail author
  • Suzanne M. O’Neill
  • Wendy S. Rubinstein
  • Kristen J. Vogel
Original Research

Abstract

Historically, physicians have expressed concern about their patients’ risk of genetic discrimination, which has acted as a barrier to uptake of genetic services. The Genetic Information Nondiscrimination Act of 2008 (GINA) is intended to protect patients against employer and health insurance discrimination. Physicians’ awareness and knowledge of GINA has yet to be evaluated. In 2009, we mailed surveys to 1500 randomly selected members of the American Academy of Family Physicians. Questions measured physicians’ current knowledge of GINA and their level of concern for genetic discrimination. In total, 401 physicians completed the survey (response rate 26.9%). Approximately half (54.5%) of physicians had no awareness of GINA. Of physicians who reported basic knowledge of GINA, the majority were aware of the protections offered for group health insurance (92.7%), private health insurance (82.9%), and employment (70.7%). Fewer physicians were aware of GINA’s limitations regarding life insurance (53.7%) and long-term care insurance (58.8%). Physicians demonstrated highest levels of concern for health insurance, life insurance, and long-term care insurance discrimination, with less concern for employer and family/social discrimination. Level of concern for the risk of genetic discrimination did not correlate significantly with awareness of GINA. Approximately 17 months after GINA was signed into federal law, physicians’ knowledge remained limited regarding the existence of this legislation and relevant details. Physicians who are aware of GINA continue to have significant concerns regarding the risk of genetic discrimination. This study reveals the need to further educate physicians about the existence of GINA and the protections offered.

Keywords

GINA Genetic Discrimination Genetic testing Insurance Government regulation Genetic privacy 

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Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Amanda L. Laedtke
    • 1
    Email author
  • Suzanne M. O’Neill
    • 2
  • Wendy S. Rubinstein
    • 3
    • 4
  • Kristen J. Vogel
    • 3
  1. 1.Genetics Center, Children’s Hospital of WisconsinMilwaukeeUSA
  2. 2.Feinberg School of MedicineNorthwestern UniversityChicagoUSA
  3. 3.Center for Medical GeneticsNorthShore University HealthSystemEvanstonUSA
  4. 4.University of Chicago Pritzker School of MedicineChicagoUSA

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