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?â nd BWhy is this knowledge relevant?^The answers were cla… Show more
“…For this study, participants from the German‐speaking part of Switzerland were invited to participate. Previous research shows that awareness for the value of health and medical data for research is low among lay‐people . Therefore, at the beginning of the online questionnaire, participants were introduced to the topic with the subsequent section:Swiss citizens will soon be able to store their health and medical data (eg, nutritional behaviour and physical activity, medicines taken, blood values, genetic data) in an electronic collection.…”
Section: Methodsmentioning
confidence: 99%
“…Risk and benefit perceptions in turn are influenced by the amount of information a person has received and, thus, the knowledge that this person has of an innovative technology . It is likely that different types of knowledge impact either risk or benefit perceptions, as two types of data have been identified as the most relevant to potential data sharers:H2.1 Knowledge about the use of genetic data in research is positively associated with benefit perception.H2.2 Knowledge about privacy aspects is negatively associated with risk perception.…”
Section: Research Questions and Hypothesismentioning
confidence: 99%
“…However, in order to perceive risks or benefits, potential data sharers need to be aware of the uses of health and genetic data in medical research and have some knowledge about privacy‐related issues . Boerwinkel et al distinguished between different types of genetic literacy, such as conceptual knowledge (eg, knowledge of genetic concepts), sociocultural knowledge (ie, knowledge of applications of genetic technologies) and epistemic knowledge (ie, knowledge of meaning of genetic information). Particularly, knowledge about the uses of genetic data for research and privacy issues might have implications for people's risk and benefit perceptions and ultimately their WTS .…”
Section: Introductionmentioning
confidence: 99%
“…Boerwinkel et al distinguished between different types of genetic literacy, such as conceptual knowledge (eg, knowledge of genetic concepts), sociocultural knowledge (ie, knowledge of applications of genetic technologies) and epistemic knowledge (ie, knowledge of meaning of genetic information). Particularly, knowledge about the uses of genetic data for research and privacy issues might have implications for people's risk and benefit perceptions and ultimately their WTS . However, the impact of different types of knowledge has not been investigated systematically regarding people's perceptions of the sharing of their genetic data.…”
Section: Introductionmentioning
confidence: 99%
“…Particularly, knowledge about the uses of genetic data for research and privacy issues might have implications for people's risk and benefit perceptions and ultimately their WTS. [28][29][30] However, the impact of different types of knowledge has not been investigated systematically regarding people's perceptions of the sharing of their genetic data. A large body of evidence from other areas of research suggested that the imbalance in knowledge between experts or stakeholders and consumers might lead to different conclusions regarding risk perception, benefit perception, acceptance and behaviour.…”
Of all the information that we share, health and genetic data might be among the most valuable for researchers. As data are handled as particularly sensitive information, a number of pressing issues regarding people's preferences and privacy concerns are raised. The goal of the present study was to contribute to an understanding of people's reported willingness‐to‐share genetic data for science (WTS). For this, predictive psychological factors (eg, risk and benefit perceptions, trust, knowledge) were investigated in an online survey (N = 416). Overall, participants seemed willing to provide their genetic data for research. Participants who perceived more benefits associated with data sharing were particularly willing to share their data for research (β = .29), while risk perceptions were less influential (β = −.14). As participants with higher knowledge of the potential uses of genetic data for research perceived more benefits (β = .20), WTS can likely be improved by providing people with information regarding the usefulness of genetic data for research. In addition to knowledge and perceptions, trust in data recipients increased people's willingness‐to‐share directly (β = .24). Especially in the sensitive area of genetic data, future research should strive to understand people's shifting perceptions and preferences.
“…For this study, participants from the German‐speaking part of Switzerland were invited to participate. Previous research shows that awareness for the value of health and medical data for research is low among lay‐people . Therefore, at the beginning of the online questionnaire, participants were introduced to the topic with the subsequent section:Swiss citizens will soon be able to store their health and medical data (eg, nutritional behaviour and physical activity, medicines taken, blood values, genetic data) in an electronic collection.…”
Section: Methodsmentioning
confidence: 99%
“…Risk and benefit perceptions in turn are influenced by the amount of information a person has received and, thus, the knowledge that this person has of an innovative technology . It is likely that different types of knowledge impact either risk or benefit perceptions, as two types of data have been identified as the most relevant to potential data sharers:H2.1 Knowledge about the use of genetic data in research is positively associated with benefit perception.H2.2 Knowledge about privacy aspects is negatively associated with risk perception.…”
Section: Research Questions and Hypothesismentioning
confidence: 99%
“…However, in order to perceive risks or benefits, potential data sharers need to be aware of the uses of health and genetic data in medical research and have some knowledge about privacy‐related issues . Boerwinkel et al distinguished between different types of genetic literacy, such as conceptual knowledge (eg, knowledge of genetic concepts), sociocultural knowledge (ie, knowledge of applications of genetic technologies) and epistemic knowledge (ie, knowledge of meaning of genetic information). Particularly, knowledge about the uses of genetic data for research and privacy issues might have implications for people's risk and benefit perceptions and ultimately their WTS .…”
Section: Introductionmentioning
confidence: 99%
“…Boerwinkel et al distinguished between different types of genetic literacy, such as conceptual knowledge (eg, knowledge of genetic concepts), sociocultural knowledge (ie, knowledge of applications of genetic technologies) and epistemic knowledge (ie, knowledge of meaning of genetic information). Particularly, knowledge about the uses of genetic data for research and privacy issues might have implications for people's risk and benefit perceptions and ultimately their WTS . However, the impact of different types of knowledge has not been investigated systematically regarding people's perceptions of the sharing of their genetic data.…”
Section: Introductionmentioning
confidence: 99%
“…Particularly, knowledge about the uses of genetic data for research and privacy issues might have implications for people's risk and benefit perceptions and ultimately their WTS. [28][29][30] However, the impact of different types of knowledge has not been investigated systematically regarding people's perceptions of the sharing of their genetic data. A large body of evidence from other areas of research suggested that the imbalance in knowledge between experts or stakeholders and consumers might lead to different conclusions regarding risk perception, benefit perception, acceptance and behaviour.…”
Of all the information that we share, health and genetic data might be among the most valuable for researchers. As data are handled as particularly sensitive information, a number of pressing issues regarding people's preferences and privacy concerns are raised. The goal of the present study was to contribute to an understanding of people's reported willingness‐to‐share genetic data for science (WTS). For this, predictive psychological factors (eg, risk and benefit perceptions, trust, knowledge) were investigated in an online survey (N = 416). Overall, participants seemed willing to provide their genetic data for research. Participants who perceived more benefits associated with data sharing were particularly willing to share their data for research (β = .29), while risk perceptions were less influential (β = −.14). As participants with higher knowledge of the potential uses of genetic data for research perceived more benefits (β = .20), WTS can likely be improved by providing people with information regarding the usefulness of genetic data for research. In addition to knowledge and perceptions, trust in data recipients increased people's willingness‐to‐share directly (β = .24). Especially in the sensitive area of genetic data, future research should strive to understand people's shifting perceptions and preferences.
Genetics is a core topic in the biology curriculum of many countries. Learning genetics is difficult for multiple reasons, including the need to reason about complex mechanisms—and to link mechanisms—that occur at different time and space scales. Previous research in genetics education explores students' understandings of inheritance patterns or their understandings of molecular genetics; only a handful of studies examined how students understand the connection between molecular mechanisms and inheritance patterns. Moreover, we know little about how such understandings develop over the secondary and undergraduate levels. To address this gap, we conducted a cross‐sectional interview study with middle school, high school, undergraduate, and graduate students after they had experienced “status‐quo” instruction in genetics. We analyzed student responses using a cognitive model of molecular genetics that describes two key domain‐specific knowledge resources: heuristics and explanatory schemas. Our findings extended this model to account for reasoning about inheritance patterns as well as identifying the knowledge resources used by students with different levels of education. This allowed us to present a snapshot of a progression describing the gradual use of these heuristics and schemas across different grades. We discuss the implications of the tentative progression for instruction aimed at supporting reasoning across time and space scales in genetics.
Mechanisms are central in scientific explanations. However, developing mechanistic explanations is difficult for students especially in domains in which mechanisms involve abstract components and functions, such as genetics. One of the core components of genetic mechanisms are proteins and their functions. Students struggle to reason about the role of proteins while learning genetics and show limited ability to provide mechanistic explanations of genetic phenomena. In genetics education there are currently two competing theoretical frameworks regarding what domain‐specific knowledge about proteins is important for reasoning about genetic mechanisms. One framework assumes knowledge about specific protein functions in the body, a tool kit of functions; the other framework assumes more abstracted knowledge about protein interactions that are common to all protein functions. These frameworks implicate different instructional frameworks: One offers to provide concrete examples of protein functions while the other offers a more general description of protein activity. Our aim in this study was to ascertain the ways in which students' reasoning about proteins' role in genetic phenomena (both familiar and novel) relates to the two theoretical frameworks. Toward this end we engaged 7th grade students in learning about proteins functions in the mechanisms underlying genetic traits using an online simulation environment that embodied key aspects of both frameworks. We analyzed students' responses to the final test questions in which they were asked to generatively reason about the underlying mechanisms of two novel genetic traits. Our findings suggest that students use proteins in their explanations mainly when they can explain the protein function and that knowledge about a few specific functions is insufficient to support conceptualization of new functions. Moreover, knowledge of general protein activities common to most functions is also insufficient. We suggest a new combined approach to supporting students' understanding of proteins' role in genetic mechanisms.
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