Genetic Knowledge Among Participants in the Coriell Personalized Medicine Collaborative
- 417 Downloads
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.
KeywordsGenetic 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.
No animal studies were carried out by the authors for this article.
- Alliance, G. (2010). Trust it or trash it? A tool to help evaluate and create genetics health information. Retrieved October 1, 2014, from https://doi.org/www.ncbi.nlm.nih.gov/books/NBK115530/.
- Calsbeek, H., Morren, M., Bensing, J., & Rijken, M. (2007). Knowledge and attitudes towards genetic testing: a 2 years follow-up study in patients with asthma, diabetes mellitus and cardiovascular disease. Journal of Genetic Counseling, 16(4), 493–504. doi: https://doi.org/10.1007/s10897-006-9085-9.CrossRefGoogle Scholar
- Center, P. R. (2002). Vital decisions: a pew internet health report. Retrieved October 1, 2014, from https://doi.org/www.pewinternet.org/~/media//Files/Reports/2002/PIP_Vital_Decisions_May2002.pdf.pdf.
- Christensen, K. D., Jayaratne, T. E., Roberts, J. S., Kardia, S. L., & Petty, E. M. (2010). Understandings of basic genetics in the United States: results from a national survey of black and white men and women. Public Health Genomics, 13(7–8), 467–476. doi: https://doi.org/10.1159/000293287.CrossRefGoogle Scholar
- Christianson, C. A., Powell, K. P., Hahn, S. E., Bartz, D., Roxbury, T., Blanton, S. H., & Genomedical, C. (2010). Findings from a community education needs assessment to facilitate the integration of genomic medicine into primary care. Genetics in Medicine, 12(9), 587–593. doi: https://doi.org/10.1097/GIM.0b013e3181ed3f97.CrossRefGoogle Scholar
- Fox, S., and Duggan, M. (2013). Pew Research Center. Retrieved October 1, 2014, from https://doi.org/www.pewinternet.org/Reports/2013/Health-online.aspx.
- Genetics., N.-N. C. f. H. P. E. i. (2007). Core competencies for all health professionals. Retrieved October 1, 2014, from https://doi.org/www.nchpeg.org/index.php?option=com_content&view=article&id=237&Itemid=84.
- Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., & Willard, H. F. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327–335. doi: https://doi.org/10.1089/gtmb.2012.0350.CrossRefGoogle Scholar
- Hurle, B., Citrin, T., Jenkins, J. F., Kaphingst, K. A., Lamb, N., Roseman, J. E., & Bonham, V. L. (2013). What does it mean to be genomically literate? National human genome research institute meeting report. Genetics in Medicine, 15(8), 658–663. doi: https://doi.org/10.1038/gim.2013.14.CrossRefGoogle Scholar
- Keller, M., Gordon, E. S., Stack, C. B., Gharani, N., Schmidlen, T. J., Mintzer, J., Pallies, J., Gerry, N., & Christman, M. F. (2010). The coriell personalized medicine collaborative: a prospective study of the utility of personalized medicine. Personalized Medicine, 7, 301–317.CrossRefGoogle Scholar
- Ratzan, S., and Parker, R. (2000). Introduction. In: National library of medicine current bibliographies in medicine: health literacy. NLM Pub. No. CBM 2000–1. In Selden CR, Zorn M, Ratzan SC, Parker RM (eds), Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.Google Scholar
- Roberts, J. S., Dolinoy, D. C., & Tarini, B. A. (2014). Emerging issues in public health genomics. Annual Review of Genomics and Human Genetics, 15, 461–480. doi: https://doi.org/10.1146/annurev-genom-090413-025514.CrossRefGoogle Scholar
- Team, R. C. (2013). R: A language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing. Retrieved from https://doi.org/www.R-project.org/.