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.
Filter by section: Commentary
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Sep 21, 2011 Commentary
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Sep 21, 2011 Commentary
DCGT: the individual's benefits above all
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.
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Sep 21, 2011 Commentary
Of deterritorialization, healthism and biosocialities: the companies' marketing and users' experiences of online genetics
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.
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Sep 21, 2011 Commentary
Predictive or preposterous? The marketing of DTC genetic testing
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.
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Jun 21, 2011 Commentary
Science and the Internet: be fruitful and multiply?
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.
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Jun 21, 2011 Commentary
Access to news on line: myths, risks and facts
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.
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Jun 21, 2011 Commentary
Social Networks, a Populated Picture
Man, by his very nature, puts things between himself and the environment, turning the latter into a place, a space. He arranges the environment around him on multiple levels, by projecting parts of himself and shaping the frontiers and the horizons that surround, define and represent him. This was learnt a long time ago, but a trace and a memory remain in the way man acts: when mapping reality (both physical reality and the reality explored through digital means), we observe it and find a way through it by adopting behaviours that have always been similar. What has changed in this mapping is the ability to recognise, especially the ability to interpret maps and creatively work them.
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Jun 21, 2011 Commentary
The Internet phenomenon
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.
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Mar 21, 2011 Commentary
Popularizing science in Italy: a historical perspective. An interview with Paola Govoni
The interview concerns the role of scientific books in the Italian society from the 19th century until today. Having played an important role in the formation of a national scientific community, science popularization has offered a ceaseless high-quality production during the past two centuries. On the other hand, even today scientific publications do reach only a narrow élite. In the author’s opinion, only the school system has the power to widen the public for science in Italy.
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Mar 21, 2011 Commentary
Science books and networks in the Renaissance. An interview with Adrian Johns
The interview portrays the role of scientific books during the Renaissance. Books written within the tradition of skilled technical and intellectual practice shaped the way that led to the birth of modern science. Rooted in a panorama characterized by the multiplicity of cultural authorities, scientific books deeply influenced Renaissance culture and created networks interlaced with the existing trade channels. Big single-authored works, typical in the Renaissance, thereafter would be replaced by smaller-scale publications.