Journal of Genetic Counseling

, Volume 25, Issue 2, pp 385–394 | Cite as

Genetic Knowledge Among Participants in the Coriell Personalized Medicine Collaborative

  • Tara J. SchmidlenEmail author
  • Laura Scheinfeldt
  • Ruixue Zhaoyang
  • Rachel Kasper
  • Kevin Sweet
  • Erynn S. Gordon
  • Margaret Keller
  • Cathy Stack
  • Neda Gharani
  • Mary B. Daly
  • Joseph Jarvis
  • Michael F. Christman
Original Research


Genetic literacy is essential for the effective integration of genomic information into healthcare; yet few recent studies have been conducted to assess the current state of this knowledge base. Participants in the Coriell Personalized Medicine Collaborative (CPMC), a prospective study assessing the impact of personalized genetic risk reports for complex diseases and drug response on behavior and health outcomes, completed genetic knowledge questionnaires and other surveys through an online portal. To assess the association between genetic knowledge and genetic education background, multivariate linear regression was performed. 4 062 participants completed a genetic knowledge and genetic education background questionnaire. Most were older (mean age: 50), Caucasian (90 %), female (59 %), highly educated (69 % bachelor’s or higher), with annual household income over $100 000 (49 %). Mean percent correct was 76 %. Controlling for demographics revealed that health care providers, participants previously exposed to genetics, and participants with ‘better than most’ self-rated knowledge were significantly more likely to have a higher knowledge score (p < 0.001). Overall, genetic knowledge was high with previous genetic education experience predictive of higher genetic knowledge score. Education is likely to improve genetic literacy, an important component to expanded use of genomics in personalized medicine.


Genetic knowledge Genetic literacy Health literacy Education Personalized medicine 



This research was supported by grants from the William G. Rohrer Foundation, the RNR Foundation, the National Human Genome Research Institute of the National Institutes of Health (R21HG006575), the National Institute of General Medical Sciences of the National Institutes of Health Pharmacogenomics Research Network (U01 GM92655), the National Heart Lung and Blood Institute (U01 HL105198), and a generous grant from the endowment of the Coriell Institute for Medical Research. We are extremely grateful for the participants of the Coriell Personalized Medicine Collaborative for their continued participation in the study and would like to thank all of the participants who took the time to complete the genetic knowledge questionnaire. The CPMC would not be possible without the efforts of a team of staff including: Daniel Lynch, Norman Gerry, Courtney Kronenthal, Matthew Chimento, Susan Delaney, Lisa Wawak, Ashley Nasuti, Andrew Brangan, Victoria Clements, Indira Jain-Figueroa, Mark Bellafante, Philip Hodges, Leo Lnu, Shane Kushin, Joe Harrison, and Corey Zuares. Special thanks are also owed to CPMC collaborators: Amy Sturm, Joseph McElroy, and Amanda Toland at The Ohio State University; J. Scott Roberts at the University of Michigan; Fox Chase Cancer Center and The United States Air Force. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Declaration of Helsinki of 1975, as revised in 2000. Informed consent was obtained from all participants included in the study. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of Interest

Authors Schmidlen, Scheinfeldt, Zhaoyang, Kasper, Sweet, Gordon, Keller, Stack, Gharani, Daly, Jarvis, and Christman declare no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Copyright information

© National Society of Genetic Counselors, Inc. 2015

Authors and Affiliations

  • Tara J. Schmidlen
    • 1
    Email author
  • Laura Scheinfeldt
    • 1
  • Ruixue Zhaoyang
    • 1
  • Rachel Kasper
    • 1
  • Kevin Sweet
    • 2
  • Erynn S. Gordon
    • 3
  • Margaret Keller
    • 4
  • Cathy Stack
    • 5
  • Neda Gharani
    • 1
  • Mary B. Daly
    • 6
  • Joseph Jarvis
    • 1
  • Michael F. Christman
    • 1
  1. 1.Coriell Institute for Medical ResearchCamdenUSA
  2. 2.Ohio State UniversityColumbusUSA
  3. 3.23andMeMountain ViewUSA
  4. 4.American Red CrossPhiladelphiaUSA
  5. 5.Annals of Internal MedicinePhiladelphiaUSA
  6. 6.Temple HealthFox Chase Cancer CenterPhiladelphiaUSA

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