genetics

Examining the nexus of science communication and science education: A content analysis of genetics news articles

Nicole A. Shea

Access to science information via communications in the media is rapidly becoming a central means for the public to gain knowledge about scientific advancements. However, little is known about what content knowledge is essential for understanding issues presented in news media. Very few empirical studies attempt to bridge science communication and science education research. This study presents findings from an inductive content analysis of genetics news articles from the New York Times’ science section. The analysis sought to characterize the genetic content knowledge anticipated as necessary to reason about featured issues. From the analysis, it is anticipated that individuals need detailed knowledge of molecular mechanisms in order to reason about such issues. Implications for supporting students’ scientific literacy in terms of the nexus of science communication and science education is discussed.

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Redefining Genomic Privacy: Trust and Empowerment

Yaniv Erlich, James B. Williams, David Glazer, Kenneth Yocum, Nita Farahany, Maynard Olson, Arvind Narayanan, Lincoln D. Stein, Jan A. Witkowski and Robert C. Kain

Fulfilling the promise of the genetic revolution requires the analysis of large datasets containing information from thousands to millions of participants. However, sharing human genomic data requires protecting subjects from potential harm. Current models rely on de-identification techniques in which privacy versus data utility becomes a zero-sum game. Instead, we propose the use of trust-enabling techniques to create a solution in which researchers and participants both win. To do so we introduce three principles that facilitate trust in genetic research and outline one possible framework built upon those principles. Our hope is that such trust-centric frameworks provide a sustainable solution that reconciles genetic privacy with data sharing and facilitates genetic research.

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It will be a disaster! How people protest against things which have not yet happened

Mathieu Quet

In the field of science and technology studies, recent works have analyzed the multiplication of promises and predictions as a major evolution of science management. The authors involved in this “sociology of technical expectations” have documented the role played by promises in the elaboration of scientific projects and their impact on the social reception of scientific issues. Yet, little attention has been paid to the predictions regarding undesirable technological futures. This article proposes therefore to analyze the discursive and argumentative practices through which journalists, scientists, and politicians denounce and propose to counter a public issue “which does not exist yet”: gene doping (no case of gene doping has been recorded to date). After a literature review of the field of the sociology of technological expectations and a presentation of the corpus, the article describes the structure of predictions and analyzes the discursive strategies according to which social actors predict a disaster in the making. The analysis is based on the study of media discourses about gene doping, in a corpus of 163 French language articles from European newspapers, published between 1998 and 2012.

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Simple genetics language as source of miscommunication between genetics researchers and potential research participants in informed consent documents

Justin Morgenstern, Robert A. Hegele, Jeff Nisker

Informed consent is based on communication, requiring language to convey meanings and ensure understandings. The purpose of this study was to investigate the use of language in informed consent documents used in the genetics research funded by Canadian Institutes of Health Research and Genome Canada. Consent documents were requested from the principal investigators in a recent round of funding. A qualitative content analysis was performed, supported by NVivo7™. Potential barriers to informed consent were identified, including language that was vague and variable, words with both technical and common meanings, novel phrases without clear meaning, a lack of definitions, and common concepts that assume new definitions in genetics research. However, we noted that difficulties in comprehension were often obscured because the words used were generally simple and familiar. We conclude that language gaps between researcher and potential research participants may unintentionally impair comprehension and ultimately impair informed consent in genomics research.

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