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
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
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
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
This paper compares opinion-leading newspapers’ frames of stem cell research in the UK and South Korea from 2000 to 2008. The change of news frames, studied by semantic network analysis, in three critical periods (2000-2003/2004-2005/2006-2008) shows the media’s representative strategies in privileging news topics and public sentiments. Both political and national identity represented by each media outlet play a crucial role in framing scientific issues. A news frame that objectifies medical achievements and propagates a popular hope evolves as a common discourse in The Telegraph and The
DATE:
TEAM MEMBERS:
Leo Kim
resourceresearchProfessional Development, Conferences, and Networks
Regenerative medicine (RM) has the potential to strongly impact on society. To determine non-experts’ impressions of RM, we analyzed opinions obtained from workshops in which participants freely discussed RM. Three major features were apparent. First, non-experts were most concerned with the possible effects of RM after it has been fully realized in society. Second, non-experts expressed concerns not only about RM itself, but also about the governance and operation of the technology. Third, non-experts were not only concerned about direct influences of RM, but also about its potential indirect
Public communication on health issues on the Internet is not only a matter of popularization of medical information. It deeply deals with narration, conversation and dialogue, which are typical values in the Web 2.0. This interview will emphasize that blogs, forums, wiki are new ways in which population has been reconstructing and integrating medical knowledge. These ways are re-defining medical knowledge by means of unhinging the standard medical communication practices, based on a linear diffusion of knowledge form experts to laypeople.
In this paper we analyze the coverage of the pandemic influenza caused by the A (H1N1) virus by the main Brazilian TV news. Jornal Nacional (JN) – which can be roughly translated with National News – reaches an average of 25 million people throughout the country daily. We have observed that the attention cycle given to the new flu by JN lasted approximately five months with significant space given to the disease. Most of the news highlighted the number of illness cases and the health measures to control the infection. Only a small amount of news dealt with issues related to research and
DATE:
TEAM MEMBERS:
Flavia Natércia da Silva MedeiroLuisa Massarani
This essay reflects on three figures that can be used to make sense of the changing nature of public participation in the life sciences today: outlaws, hackers and Victorian gentlemen. Occasioned by a symposium held at UCLA (Outlaw Biology: Public Participation in the Age of Big Bio), the essay introduces several different modes of participation (DIY Bio, Bio Art, At home clinical genetics, patient advocacy and others) and makes three points: 1) that public participation is first a problem of legitimacy, not legality or safety; 2) that public participation is itself enabled by and thrives on
In this essay, I argue that the rise of personal genomics is technologically, economically, and most importantly, discursively tied to the rise of network subjectivity, an imperative of which is an understanding of self as always already a subject in the network. I illustrate how personal genomics takes full advantage of social media technology and network subjectivity to advertise a new way of doing research that emphasizes collaboration between researchers and its members. Sharing one’s genetic information is considered to be an act of citizenship, precisely because it is good for the
In the Handbook on the socialisation of scientific and technological research, edited by Wiebe Bijker and Luciano d’Andrea, ‘socialisation’ is used to both describe and prescribe the ways in which science and technology are used in society. In this comment, ‘socialisation’ is discussed from two other points of view. First, the ways in which science and technology are sometimes used to organize, structure and dominate the social are identified. Second, drawing on Merton’s norms of science, an argument is made against over-socialising science and in favour of acknowledging and preserving the
The present article investigates public understanding of HIV/AIDS related issues that touch the thought structure of common citizen, among the Indian public. Analysis is based on a representative sample collected from 10 states of India. The authors have also analysed the relative cultural distance at which men and women, as separate groups, could be placed. The relative cultural distance, for each of the selected issues, has been computed and it was found that men, as a group, are closer to scientific thought structure compared to women.
DATE:
TEAM MEMBERS:
Surjit SinghGauhar RazaS N MisraPushpa Dahiya