Genetic Knowledge Among Participants in the Coriell Personalized Medicine Collaborative

Abstract

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.

Outcomes of a Randomized Controlled Trial of Genomic Counseling for Patients Receiving Personalized and Actionable Complex Disease Reports

“…Furthermore, the more comprehensive assessment of family history through genomic counseling allowed for disease risk to be modified in a significant percentage of cases. Our study participants demonstrated similarly high levels of genetic knowledge to that reported in the larger CPMC cohort (Schmidlen et al, 2016) as well as that found by Haga et al, who also studied genetic knowledge in the context of common, complex diseases (Haga et al, 2013). In a highly educated population of patients provided with genetics/genomics education during recruitment and with access to online genetics/genomics educational material prior to genomic counseling, we did not find significant improvement in genetics/genomics knowledge or numeracy following genomic counseling.…”

“…The CPMC web portal also offers text and multimedia format educational materials and tools that enable study participants to learn more about basic genetics concepts, complex disease genetics, pharmacogenetics, family history risk, relative risk and health condition specific summaries detailing disease etiology, risk factors, treatment and available preventative or risk reducing actions. Results from primary outcomes of various trials related to the CPMC have been previously reported (Gordon et al, 2012; Schmidlen et al, 2016; Schmidlen et al, 2014; Sweet et al, 2016). …”

Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults: A Qualitative Study

“…Discussions differ over whether DTC-PG risk information would improve health behavior and disease prevention or might result in psychological distress and will ultimately lead to increased healthcare consumption for clarifying tests. First results based on populations of early adopters indicate increased healthcare consumption [18], diverse findings in terms of behavior change and self-efficacy [19-21] and differing levels of understanding of genetic information, and increasing anxiety based on demographics, literacy, and education [22, 23]. Some argue, in order to help the customer and to minimize misunderstanding, the commercial companies should provide adequate information regarding genetic counseling and what it means.…”

Counselees’ Perspectives of Genomic Counseling Following Online Receipt of Multiple Actionable Complex Disease and Pharmacogenomic Results: a Qualitative Research Study

“…Results from primary outcomes of various trials related to the CPMC have been previously reported (Gordon et al, 2012; Schmidlen T, 2016; Schmidlen et al, 2014; Sweet K, 2016). For this qualitative interview study, participants were either from the Ohio State University chronic disease cohort (OSU-CPMC) comprised of individuals diagnosed with either hypertension or congestive heart failure (n=199) or the CPMC cohort.…”