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Dec 21, 2011 Commentary
Science journalism and digital storytelling

by Nico Pitrelli

Among the most interesting aspects of the changes in the media ecosystem a leading role is played by the impact of digital and networking technologies on the ways news reports are built. In this Jcom commentary, the issues of the relationship between digital storytelling and professional news production will focus on science journalism. The commentary will deal with theoretical reflections and practical examples of innovative experiences in which different narration methods were exploited for scientific information.

Volume 10 • Issue 04 • 2011

Sep 21, 2011 Commentary
From symptomatic to pre-symptomatic patient: the tide of personal genomics

by Marina Levina and Roswell Quinn

Personal Genomics Companies are an emerging form of biotechnology startup that bring rapidly advancing whole genome technologies to a variety of commercial venues. With a combination of direct-to-consumer marketing, social media, and Web 2.0 applications these companies seek to create novel uses, including entertainment, for what is described as predictive medicine – that is the use of genetic marketers to create health forecasts that would allow individual’s healthcare to be tailored to their individual genomic data. In this brief piece, the authors use a critical cultural approach to question how this combination of genomics research, marketing, and communications technologies may alter both patient experiences and research processes. In it we argue these companies radically expand the definition of a patient by claiming all consumers are simply pre-symptomatic patients. Moreover, by placing genomic data on both the marketplace and cyberspace, personal genomic companies seek to create new avenues of research that alter how we define (and access) research agendas and human subjects. Therefore, beyond commonly discussed issues of ethics and privacy rights, Personal Genomics has the potential to alter both healthcare priorities and distribution.

Volume 10 • Issue 03 • 2011

Sep 21, 2011 Commentary
Predictive or preposterous? The marketing of DTC genetic testing

by Timothy Caulfield

Direct-to-consumer (DTC) genetic testing has generated a great deal of social controversy. While the degree to which DTC testing actually causes harm remains uncertain, there is a consensus that the information provided by these companies should be accurate. Unfortunately, this is often not the case. Indeed, there are misrepresentations associated with all forms of testing, be it for superficial cosmetic services, athletic ability or disease predisposition. Countering this phenomenon will require a wide range of actions, including the use of formal regulatory mechanisms, the education of primary healthcare providers (in order to give them the tools necessary to advise patients and respond to questions) and more aggressive action by the genetic research community.

Volume 10 • Issue 03 • 2011

Sep 21, 2011 Commentary
Know your genes. The marketing of direct-to-consumer genetic testing

by Alessandro Delfanti

Genetic testing promises to put the ability to decide about our life choices in our hands, as well as help solve crucial health problems by preventing the insurgence of diseases. But what happens when these exams are managed by private companies in a free market? Public communication and marketing have proven to be crucial battlefields on which companies companies need to engage in order to emerge. This issue of JCOM tries to shed some light on the communication and marketing practices used by private companies that sell direct-to-consumer genetic testing, from single genetic mutations to whole genome sequencing.

Volume 10 • Issue 03 • 2011

Sep 21, 2011 Commentary
Genomics' problem of communication

by Jenny Reardon

Since opening their doors in late 2006, personal genomics (PG) companies have faced skepticism and criticism from influential academic and government circles. While this has posed a clear problem of communication for these companies — one of effective promotion — I argue that the communication problem these companies face runs much deeper. It is a problem that lies at the heart of any genomics: the very understanding of communication and information around which genomics is built. While the value of genomic information for persons has been widely questioned, questions about the very notion of information that undergirds the production of genomic information rarely, if ever, has been broached. I suggest that making significant inroads into the vexing debates about PG would be greatly aided by addressing these more fundamental questions about the nature of information, and its genomic qualities.

Volume 10 • Issue 03 • 2011

Sep 21, 2011 Commentary
DCGT: the individual's benefits above all

by Donato Ramani and Chiara Saviane

Easy, cheap, efficient as online service often are. Direct to Consumer Genetic Testing (DCGT) represents a big evolution towards personalised medicine. If the phenomenon seems to be unstoppable, the first aim of its present and future developments should be the customers’ benefits. A certified quality of the services provided, a clear communication and a well-structured support to customers should be the critical conditions that could transform those online services in something really important: for the individual’s health and the society as a whole.

Volume 10 • Issue 03 • 2011

Sep 21, 2011 Commentary
Of deterritorialization, healthism and biosocialities: the companies' marketing and users' experiences of online genetics

by Pascal Ducournau and Claire Beaudevin

Since the early 2000s, anybody can buy genetic tests, directly sold on the Internet. These tests provide information about susceptibilities to some diseases and/or about ancestry. Thus, this article deals with a new e-market, whose scientific basis (validity of the tests) and status (as medical devices or consumer goods) are currently controversial. On one hand, we describe the tests and the advertisement and marketing strategies used by the companies (we made an inventory of about 40); on the other hand, we discuss several aspects on the basis of interviews conducted with users: first, the entanglement of these strategies with the global context of healthism and the emphasis put on individuals’ empowerment regarding health decisions — “individualized biopolitics”. In addition, this article broaches the new kind of biosocial networks appearing in these tests’ wake: some users indeed gather on the basis of a genetic proximity, as is it put forward by their results.

Volume 10 • Issue 03 • 2011

Jun 21, 2011 Commentary
The Internet phenomenon

by Domenico Laforenza, Maurizio Martinelli and Davide Gualerzi

The Internet has become a worldwide phenomenon. It is undeniable that the Net has forcefully entered everyday life, ceasing to be a useful tool only for a small circle of researchers and academics, to become a new and versatile means of mass communication. And measuring Internet access and calculating the number of Internet users is not easy. By using the domain names registered in the “.it” as an endogenous metric, the Institute of Informatics and Telematics of the Italian National Research Council (IIT-CNR) carried out a research on Internet diffusion in Italy taking into account some major categories of users (enterprises, non-profit organizations, individuals, professionals and public bodies) and territorial distribution (nation, macro-area, region and province). This research has made it possible to carry out an initial analysis of the digital divide in Italy.

Volume 10 • Issue 02 • 2011

Jun 21, 2011 Commentary
Science and the Internet: be fruitful and multiply?

by Sveva Avveduto

What role and citizenship has the scientific thought on the web, or rather on the social side of the web? Does it benefit from the debate between peers and with the general public, or else does it only risk to become a monologue? How to deal with the number of instruments the Internet is able to provide in making, discussing and disseminating research? These are some of the questions tackled by the reflections from scholars and experts which were the basis for our debate.

Volume 10 • Issue 02 • 2011

Jun 21, 2011 Commentary
Access to news on line: myths, risks and facts

by Lella Mazzoli

Although the debates on the Internet (sceptical, enthusiastic and finally more mature ones) in our country started in the mid 90s, it is only over the past few years that the Internet, especially thanks to social networks, has become a daily practice for millions of Italians. Television still is the main medium to spread information, but as it becomes increasingly cross-bred with the Internet (and other media too), the information-spreading process deeply changes. This creates, also in our country, the preconditions for the development of a web public (an active and connected one), founded on the new practices of multitasking and participatory information.

Volume 10 • Issue 02 • 2011