The first time I heard of 23andMe I was reading an article on “Internazionale”, few years ago. Founded by Anne Wojcicki, the company provides a series of data and statistics about individuals’ genome to everyone who is keen enough to send his/her own spit to be examined. For those who might not know, Wojcicki is Sergei Brin’s wife, one of Google’s chiefs and one of the main investors of the project.

At the time the article I was reading was published, the analysis of the saliva by 23andMe cost thousand of dollars and people raised funds online to do it and discover the secrets of their own helices. Now the price has decreased to $399 and it can get as low as $99 only if you agree to get a yearly subscription to Personal Genome Service, an additional update service.

This type of service is not only offered by 23andMe but also by other companies, even though, compared to its competitors, 23andMe has better visibility and more efficient means thanks to its connections with Google. Principally located in the USA, consumer-oriented genetics is an emerging market in which an increasing amount of people is starting to invest. Initially for few, this field has been growing fast for two reasons. On one hand the product is very appealing.

A lot of people are in fact willing to know their susceptibility to certain diseases, or want to find remote relatives. On the other hand, the online promotion has been very efficient and Internet inspired its crowd-sourcing techniques. In fact, it is thanks to the customer shift into a willing donor of information (similar to a Google user that generates free value for the company), that private corporations have found legitimacy even in scientific fields, bringing data collection methods to greatly accelerate the progress of scientific research.

numero66_ Me Myself 02

By looking at it, it becomes clear that the 23andMe‘s website has been designed to convey scientific legitimacy. Its background is white, with green details that remind an hospital environment. Moreover, it is an intuitive and fun web 2.0 tool, with colored icons, elegant rounded fonts etc. In addition, the slogan “genetics just got personal” written in lower case font, and the tweets stream on the homepage, immediately conveys the Silicon Valley enthusiasm 2.0 that permeates the entire operation.

In any case, after reading the first article on “Internazionale” I kind of forgot about 23andMe. In January 2011, however, at the conference held by the “Media, Communication and Cultural Studies Association” in Salford, I came across a presentation by Kate O’Riordan, a researcher at CESAGen ( presentation was about the convergence of web 2.0 platforms with consumer-oriented genetics.

In that occasion O’Riordan, whose book The Genome Incorporated: Constructing Biodigital Identity analyses the penetration of genomic studies into media and society, explained how new media have become a key tool not only to make research more popular but also to structurally change some of its dynamics.

Given the decrease of prices in the last few years, it is inevitable to imagine a near future in which genes scanning will be free or almost free, in which widgets and customized apps will be used on blogs or Facebook to share our biological profiles. Science fiction dystopian scenarios, eugenics societies where you need a certain genetic pedigree to find a job, inevitably come to mind. Considering the current situation however, of course these are highly unlikely scenarios and sensationalist exaggerations. But it is still important to keep this field monitored in future.

numero66_ Me Myself 03

In order to better understand the positive or negative implications of this constant implementation of consumer-oriented genetics in our everyday life, I asked a few questions to Ms. O’Riordan.

Nicola Bozzi: Could you explain how did you start working on the subject of your book, The Incorporated Genome? What kind of research are you conducting at CESAGen?

Kate O’Riordan: At CESAGen I worked on public engagement and genes media culture, genetics and cloning, with a team of researchers made by Maureen McNeil, Joan Haran and Jenny Kitzinger. Since 2004, we are following these fields on media, interviewing scientists and journalists, and talking with people through groups, events and exhibitions, and through a research project on Mass Observation When we wrote the first part of the research we focused on human cloning partly because in the UK the cloning phenomena started to be considered a common practice instead of being simply fiction, and therefore it also become a key element of our research.

The book was born because of the great amount of material I collected and because I have been studying this field and the social aspects of genomics for a long time. I had the idea that media were a fundamental channel for genomics to enter our daily life. At the same time I had the impression that there was a huge gap in the literature related to the topic, and between genomics as science and its reception in people’s daily life. On one hand genomics was still seen as an incomprehensible techno science and on the other hand it was becoming routine.

Both on mass media and in the academic world, the Human Genome Project has been described as a wonderful thing of the modern world, as something transcendental. At the same time however, the trivial reality was discussed by politicians and appeared in reality shows, and therefore the gap between the wonder of science and the condition of the common man seemed to grow. The boost has been an attempt to communicate these kinds of contradictions, to try to understand what was happening in this new interface for genomics consumers, through a series of “media studies” cases.

numero66_ Me Myself 04

Nicola Bozzi: How did the chapter on consumer genomics develop?

Kate O’Riordan: Consumer genomics was really starting to grow while I was writing this book. It just appeared in reality shows in the UK and this event created controversies and brought public visibility to some key actors. The Human Genetics Commission was finalizing new policy actions in the field, something they had been talking about for long time. New companies like 23andMe, Navigenics and DeCodeMe seemed to keep constantly growing and a new entire journalism movement about health and technology started, with journalists and public figures taking the test ad comparing their results.

Nicola Bozzi: How much is consumer genomics actually spread nowadays?

Kate O’Riordan: We definitely talk more about it than we actually use it, in Europe even less than in the US. In some ways this is a typical new media moment. Waves of publicity generated by start-ups create significant visibility, which at the same time suggest the idea that we should take advantage of genomics right now, that we should, metaphorically speaking, catch the wave. The question is how many people will actually do it, and what will be left after the media coverage will start to decrease. In the case of consumer genomics the main actors are part of a small technocratic elite, but the fact that something is moving, despite global recession, indicates that the field will keep growing.

One of the most visible companies in this field, 23andMe, recently announced that its database contains 100,000 genomes, and the Personal Genome Project (, another non commercial, academic and open source project, aims to acquire another 100,000 people. If you look at more specialized sectors like ancestry testing, for several years there has been a constant growth thanks to consumers tests, and therefore there are much more precise statistics. At a global level numbers are small, but the emerging market shows that the most important companies are all located in the USA, except one, DeCode, which is from Iceland.

numero66_ Me Myself 05

Nicola Bozzi: Your presentation at MECCSA focused on the convergence of web 2.0 platforms with consumer-oriented genetics. Could you explain what do you mean and how does it work?

Kate O’Riordan: Web 2.0 is a convergent platform, in the sense that everything can pass through it: TV, radio, movies, interpersonal conversations, and a lot of data. Consumer genomics is part of this convergence, the majority of it is about acquiring a technologically savvy elite able to promote the product and help to test its marketability and its feasibility as a biomedical research tool.

I focused on 23andMe because it is a key player in this field, besides being a point of convergence. It is a start up that comes from Silicon-valley, which means it is located right in the middle of the computer culture. It has an office and people working for it, but the delivery is online. They send the samples to a lab and have a high amount of material duties, but they are strongly focused on new media. As a customer, access and interaction are online. The company asks its customers to share genomic information online with other customers, it encourages people to create genetic groups of interest and genetic links.

The genomic information is presented through a browser, a blog becomes the main way of communication and the only advertisement is in Silicon valley. The company is very much part of the computer working culture, and customers leave their genomic information both inside the 23andMe online community, and on more publicly accessible forums.

One of the challenges of this way of circulation is that, in the name of convergence, some fundamental changes are blacked out. Web is usually a participative, interactive and empowering tool, while genomics has a different story. Questions have been raised about consent, whether information is complete or not, and worries about the way data can be used to define what and who constitutes human beings also started to spread. The problem with Facebook and the possibility to upload everything online is that all these concerns are mainly overturned by the enthusiasm for the web.

In this case convergence is also a sort of re-branding, in which the concerns related to biotechnology are largely overturned by the language of democracy and the individualism associated to new media. In this shift, the materiality of the upload, the fact that we are talking about body tissues and therefore that they are a different medium, seem to be lost.

numero66_ Me Myself 06

Nicola Bozzi: The web 2.0 rhetoric is very popular online, and it is often used to extract value from a community of consumers who work for free to improve the service. What does the consumer gain from the analysis of his/her genome? Is it a fair deal or not?

Kate O’Riordan: This is an interesting question, that has been debated in several contexts. Politicians, scientists, bioethicists, businessmen, journalists and scholars have all asked themselves whether consumer genomics is a scam or not, if it is damaging or if it is of any medical relevance. I already mentioned journalists, or other media figures, comparing results from different companies and criticizing them when they were differing.

The fact that different companies give different information has been used to cast doubt on this emerging industry, saying that some of them are trying to create a sort of standardization. This is not a proof of scam, but a proof of the amount of data involved and the challenge of making some sense out of it. The results depend on the chips that are used to process the information and the databases used to compare them.

Somehow there is an extraction, as you rightly implied in your question. The genomic value is extracted from individuals and what is taken is much more valuable for the company than for the individual. Of course this relationship is not well balanced. 23andMe is pretty open about it and asks customers to freely join a research revolution that promises to the public science goods in the future, rather than an immediate profit in the present.

Their goal is to take genomic research out of the field strictly regulated by scientific studies and bring it to the realm of crowd-sourcing. This process might have a return in terms of medicines development. Hypothetically we are talking about the medicines of the future, or other biomedical actions that will be probably resold by the same elite that is now generating these data.

Genome scanning doesn’t have a diagnostic useful value. Ironically it could be more useful to participate to the scanning when you’re not looking for medically relevant information. Who takes advantage from it is who has a general interest in genomics, an interest for research, or who is testing the methods for his/her own lab. Or also people who want to show their tech-savvy status. People who write books or technology columns find the topic highly productive. However, if you want to know about your health it’s better to see a doctor.

numero66_ Me Myself 07

Nicola Bozzi: What is the relationship between the commercial area of consumer genomics and the scientific community?

Kate O’Riordan: The scientific community and the commercial areas of science and technology are blend together, everywhere. There was antagonism between medical professionals and companies of consumer genomics who fight to shape a new policy to answer the question about who will get the control of the meaning of genomic information. For example, the British Society for Human Genomics, which is largely constituted by clinical geneticists, warned about the dangers of consumer genomics, and pursued action against Genetic Health a British private company active in the sector.

At the same time however consumer genomics companies involved several researchers and tests are made in registered laboratories. DeCodeMe is a good example of total integration of these two areas. Although technically bankrupt the company still operates. In this specific case, the mix of scientific community and commercial goals is clear as this branch of consumer genomics is in the database of the Iceland’s health sector. The commodification of this database is a process on which Hilary Rose, in 2000, based a report for the British Welcome Trust (

In terms of relations between science and consumers, 23andMe has been able to demonstrate, in one of their publications ( on the “PloS JournaLS”, that their approach for samples collection can be used for research.

numero66_ Me Myself 08

Nicola Bozzi: What is in your opinion the future of consumer genomics?

Kate O’Riordan: At the moment the struggle between the Silicon Valley deregulated digital media culture and the highly regulated biomedical research goes on. In the USA the Food and Drug Administration (FDA) keeps trying to regulate the field, while in the UK the Human Genetics Commission and others organizations are trying to draft together a voluntary codes of conduct. We are moving towards standards and norms, that will probably help to legitimate the field. It might seem weird but people working in this field welcome regulations because they provide legitimacy and a working system in an otherwise unstable context.

Consumer genomics has already widespread and well-established markets that emerged due to the ancestry tests. However, if genomics is only one of several ways to know human life, why should people be persuaded by its powers, and spend time and money on the production of more and more genomes? Moreover, if genomics is complex and needs to be contextualized by specialist knowledge, why should the promise of a democratization through web 2.0 be appealing? Of course the problem is that genomics is not simply another system of knowledge.

The last part of the 20th century witnessed the rise of genes and genomes as a way to know biology. And this image of genomics as the truth-machine is problematic. The British cultural critic Raymond Williams once said that new technologies act as vectors for older and more conservative believes. The above mentioned convergence seems to be exactly the case.

Nicola Bozzi: What social effects do you expect from a wider spreading of this field?

Kate O’Riordan: At the moment an important effect is the normalization of the idea of uploading biomaterials on a mediated ecology, and the future expansion of biometric possibilities. This biodigital dimension of media opens new possibilities for both individual identity and identification structures. Paying attention before uploading blood and tissues seems to be wise. Moreover, if the field rises and gains more legitimacy, genomics will strengthen its position has the primary form of knowledge of biology, and at the same time the power of the technological elites will grow. However, this could also bring unexpected actions and creative biopolitic strategies already present nowadays, like bioart for example.

numero66_ Me Myself 09

Nicola Bozzi: In which other ways is the language of social media used to sell science, or to change its perception?

Kate O’Riordan: In the case of consumer genomics social media have been used to increased the field by involving a huge amount of consumers/subjects that buy the product and contribute to the generation of data. At the same time social media are also a platform where to play with human genomics and criticize it. This is a consequence of the convergence in which media sell science but at the same time also create a new public, much more critical other than only willing to obey. Critique and consumerism run therefore in the same channel.

Another aspect of this convergence is the use of the 2.0 language to encourage the scientific community to be more easily accessible, like for example by using open source formats for data like wiki and accelerate the processes of search.

Social media are a form of promotional culture. In the scientific field they have become a hot topic of discussion and many see it as a new form of science communication. In this context social media are becoming well integrated with the most successful sources and there is a lively pro-science blogosphere linked to fundamental science communicators such as Ben Goldacre –

numero66_ Me Myself 10

Others see this phenomena as selling science in a more general sense. The spread belief in the UK is that public is a bit blind for what concerns the great benefits that science has to offer and that there is an anti-science lobby that boycotts the communication. In this case social media are seen as a good way to involve the scientific public and make everything a bit cooler. It is clear however that the line between communication and promotion is becoming always more subtle.