Variability in conceptualizations and measurement of genetic literacy

Future Forecasting for Research and Practice in Genetic Literacy

“…Less commonly, other definitions included the skill domains of applying genetic information to societal or professional contexts or print skills related to genetic information. Based on the findings of the scoping review and our review of related areas of literacy (e.g., health literacy, media literacy), we proposed a consensus definition of genetic literacy: “sufficient knowledge and understanding of genetic information to allow for effective communication and application of learned information and informed decision-making in personal, societal, and professional contexts” [2].…”

“…Future studies could investigate how different domains of genetic knowledge [8] relate to use of genomic information. However, our prior analysis of genetic literacy definitions [2] has shown that it is important in future work not to use “literacy” and “knowledge” as synonyms in the genetics context. Empirical studies should carefully consider cognitive skill domains of information processing, communication, and application in addition to knowledge.…”

“…We have also shown that preferences for numeric information (vs. words) affects interest in learning different types of test results from genome sequencing among women diagnosed with breast cancer at a young age [14], as well as how much information patients would want about those test results [15]. Our recent survey research indicated that commonly used measures of health literacy, numeracy, and genetic literacy are only weakly to moderately related [2]. These findings together suggest that these are distinct constructs, highlighting the need for greater clarity in our understanding of how different literacy and numeracy constructs (e.g., genetic literacy, health literacy, numeracy, graph literacy, oral literacy) contribute to the reach and utilization of genomic technologies.…”

“…With few exceptions [16], the measures have not assessed skills related to understanding, interpreting, or utilizing genetic information. In addition, the areas of conceptual knowledge assessed by these measures varied widely, with little rationale for the selection of facts assessed [2]. Measures have included domains such as knowledge of the basics of DNA structure and function, patterns of heredity, genetic technologies, genetic mutations, gene-environment interactions, family health history, and genetic laws, privacy, and ethics [2].…”

“…Future research could consider types of validity beyond face validity as well as reliability. The literature would also benefit from clearly describing adaptations to measures, as well as the reliability and validity of the adapted measures [2]. In order to advance public health translation of genomic discoveries, development and validation of a reliable measure of genetic literacy that is consistent with a consensus definition and can be utilized across modes of administration is needed.…”