Reaching a Consensus on the Definition of Genetic Literacy that Is Required from a Twenty-First-Century Citizen

Sci & Educ https://doi.org/10.1007/s11191-017-9934-y A RT I C L E Reaching a Consensus on the Definition of Genetic Literacy that Is Required from a Twenty-First-Century Citizen Dirk Jan Boerwinkel 1 & Anat Yarden 2 & Arend Jan Waarlo 1 # The Author(s) 2017. This article is an open access publication Abstract To determine what knowledge of genetics is needed for decision-making on geneticrelated issues, a consensus-reaching approach was used. An international group of 57 experts, involved in teaching, studying, or developing genetic education and communication or working with genetic applications in medicine, agriculture, or forensics, answered the questions: BWhat knowledge of genetics is relevant to those individuals not professionally involved in science?^ and BWhy is this knowledge relevant?^ The answers were classified in different knowledge components following the PISA 2015 science framework. During a workshop with the participants, the results were discussed and applied to seven cases in which genetic knowledge is relevant for decision-making. The analysis of these discussions resulted in a revised framework consisting of nine conceptual knowledge components, three sociocultural components, and four epistemic components. The framework can be used in curricular decisions; its open character allows for including new technologies and applications and facilitates comparisons of different cases. 1 Introduction Genetics has evolved from a unique subdiscipline of biology into an integral part of most biological research, covering multiple levels of biological organization. Results from studies in genetics influence societal practices, such as disease diagnosis and treatment, drug development, * Dirk Jan Boerwinkel Anat Yarden Arend Jan Waarlo 1 Freudenthal Institute for Science and Mathematics Education, Utrecht University, Utrecht, The Netherlands 2 Weizmann Institute of Science, Rehovot, Israel D. J. Boerwinkel et al. industrial production, forensic investigation, crop protection, and sports. It has also become clear that many genes interact to produce phenotypes, that gene expression is modulated by the environment, and that the path from gene to trait is more complex than previously thought. Thus, images of genes and genomes have changed fundamentally, and the time might come when personal genome analysis will become standard practice (Gelbart 2012). Nevertheless, few of these developments are addressed in biology education: The gap between scientific understanding of genetics and what is taught in genetic education in schools has increased (Dougherty et al. 2011). In recent years, calls for initiatives to improve the public’s genetic literacy have emerged, because it is becoming essential for today’s citizens (Christensen et al. 2010; Dougherty 2009). Accordingly, teaching and learning materials on bioinformatics, DNA microarray, genetic testing, and forensic DNA research have begun to be developed and implemented (e.g., Machluf and Yarden 2013; Campbell et al. 2006; Van Mil et al. 2010). The question is whether it is sufficient and feasible to simply add new contents to current genetic education or whether a more fundamental restructuring is necessary. To provide an appropiate account of genetics for our future citizens, this study is aimed at defining the term genetic literacy. Genetic literacy is a part of scientific literacy, which has many definitions. Functional scientific literacy is characterized by the ability to converse, read, and write coherently in a nontechnical but meaningful context (Laugksch 2000). A functional illiterate person, according to Shamos (1995), lacks an understanding of the fundamental role played by theories in the practice of science and of the unique processes that characterize it. In addition, the Btrue^ scientifically literate individual has the ability to use those scientific ways of thinking for individual and social purposes. Few articles have been written on genetic literacy for every citizen. And most literature on genetic literacy concerns health issues. Some studies have addressed the problem of insufficient preparation of healthcare providers to deal with geneticrelated issues (Houwink et al. 2012; Kaye and Korf 2013). McInerney (2002) stressed that prevention in health issues implies a partnership between providers and patients, which means that both health professionals and the public should be sufficiently literate in genetics. Jennings (2004) saw genetic literacy as a part of genetic-literate citizenship which includes both participation in societal deliberation on genetic-related issues and personal decision-making on the use of genetic-related services. Other studies describe genetic literacy more generally, focusing mainly on the undergraduate level (Bowling et al. 2008). Formulating the required genetic literacy to participate as a citizen in today’s society has consequences for policy that determines the core curriculum (Dougherty et al. 2011) and on public science communication (Pearson and Liu-Thompkins 2012). The research question investigated in this study is which genetic knowledge is needed for decision-making on genetic-related issues. Toward this end, we conducted a study combining a Delphi approach and a workshop. Delphi studies have proven to be effective in defining and solving curricular questions (Osborne et al. 2003; Bolte 2008). By asking for the genetic knowledge needed for decision-making, this study fits a conception that can be termed functional scientific literacy (Shamos 1995; Laugksch 2000). 2 Method 2.1 Phase I (December 2012) Using a consensus-reaching process, experts worked together on a definition for the term Bgenetic literacy.^ The initial phase of this study included two questions that were sent to Reaching a Consensus on the Definition of Genetic Literacy that Is... experts via e-mail: BWhat knowledge of genetics is relevant to those individuals not professionally involved in science?^ and BWhy is this knowledge relevant?^ The experts (n = 57) included science education researchers (n = 26), developers of educational materials (n = 18), teachers and teacher educators (n = 8), science communicators (n = 6), scientists—including medical geneticists, community geneticists, and genetic counseling experts—forensic science experts and agricultural experts (n = 8), and educational policy-makers (n = 3). The science education researchers and developers were all involved in research and development of genetic education. The total number of experts exceeds 57 because some of the experts had more than a single expertise. To obtain a representative group of participants, we started with a group of researchers from eight different countries who had published on genetic education and asked them to recommend other researchers, developers, teacher educators, and genetic specialists. Participants came mainly from Europe and the USA, along with three participants from Australia an (...truncated)