Introduction
The tentative aim of this paper is to analyze the impact of Internet and “new” social media on relationships between STS and its fields. In order to achieve this aim, I employ an analytical framework derived from Michel Serres notion of a parasite, which is someone that interrupts and creates noise that produce ’disorder and who generates a different order’ (Serres, 1982: 3). Apart from Serres parasite concept, I will also employ concepts derived from sociology and cultural geography in order to define Facebook as a form of social space that displays rhizomeric features (Deleuze and Guattari, 2004; Lefebvre, 1991).
The disposition of this paper will be as follows: First, I will give an short account of Huntingon´s disease, which will function as a form of “model disease”, or case study” in relation to the aim of this paper. After this, I intend to make an outline of Facebook as a social space. At last, I will present a tentative discussion wherein I will propose that Internet and “new” social media constitute a form of spatial formation that might bring about new relations between STS and its fields.
Huntington´s Disease
Huntington´s disease is a genetic disorder that primarily affects the brain. The disease is caused by a mutation of only one gene situated on chromosome four of the human genome. The inheritance pattern is autosomal dominant, meaning that the risk for inheriting the mutated gene is 50% from an affected parent to a child. Moreover, the mutation that causes the disease have a 100% penetrance that means that if you are a gene-carrier you will sooner or later fall ill with HD. There are currently no cures available, or any form of medical intervention that slows the progression of the disease. The symptomology is complex that includes psychiatric symptoms (depression, moods swings, irritability, aggression and personality changes and neurological symptoms (choeratic movements, “dance like movements”), and in the end stages dementia.
The official diagnosis is currently put when the affected individual displays clear neurological signs and symptoms, but the psychiatric symptoms of HD can often precede these neurological signs and symptoms by years. In a typical case these neurological signs and symptoms will make their debut in around the age of 40 but there is variability as to when these neurological signs and symptoms make their debut. Since the early 1990:s there has been a predictive genetic test available for those who are at risk for inheriting the disease. This means that an individual who are at risk for inheriting the mutated gene can take a test that will show if he/she are a gene-carrier. Moreover, due to the genetics of the disease this test will also tell if he/she will fall ill with the disease.
The lived experience of being at risk or having tested positive for the mutated gene can be described in terms of being in a “limbo”, or being situated in a liminal space (Hagen, 2011; Hagen, forthcoming) between the normal and the abnormal. In order to manage this situation these individuals can turn to new social media, mainly Facebook. In the next section, I intend to make use of an example from my own research in order to give an illustration of how Facebook can be understood as a form of social space with specific characteristics.
Facebook as a Social Space
The citation below shows how one individual who tested positive for the mutated gene, came in contact with other affected individuals through Facebook:
Mostly, I´ve to say, people just found you. It was…and then it just became more and more, so to speak. I must have had something on Facebook that told, something with Huntington, you know something that made people to get in touch through mail, asking in what way I was affected. And then that [person], you know that´s the advantage with Facebook; have another friend, who have another friend, who have another friend. And then the whole thing takes off, so to speak. Suddenly you´re having, on no time at all, a whole mass of people [as friends on Facebook] (Hagen, 2012: 50).
To be noted in the above citation is the almost “logarithmical” growth in contacts that this informant was able to get through Facebook. Moreover, this growth can also be said to transcend aspects of both time and physical space, in what David Harvey denotes as a ’compression of our spatial and temporal worlds’ (Harvey 1990: 240). These contacts, or Facebook-friends, provided emotional support but these contacts also played an important part in the formation of a disease identity:
Yes, it does. Experience and info. Which makes me understand. You know, there it is again, it´s difficult to think when it´s only you…
Niclas: Is it an insight that grows, then. That you discuss these things on Facebook?
You know, it can be that somebody posts something like either a thought about how something might be in the future or something about an ailment or symptom, or something that they might have at the moment. Or something about a family member, or maybe they post a question if there is someone who have some sort of experience if it can be like this. So, its many pieces…even though they might have doctors, they don´t get the answers from them. Maybe they got from the doctors that [a certain sign or symptom] it has nothing to do with Huntington. And then when they post on Facebook, they get a tons of answers like: my husband has that [signs or symptoms] as well, my wife and daughter has the same [signs or symptoms], and all of a sudden you get another picture and thinks that: Alright, of course there´s a connection, for us it´s so obvious in a way that it´s not for doctors or geneticists (Hagen, 2012: 55).
Through Facebook this individual could communicate with others who were in the same situation. These contacts were both increased and amplified by Facebook, and as a consequence of this amplification the affected individuals could discuss and compare their experiences and even construct a disease identity (Hagen, 2012). The main aspect of this disease identity (named HD+ by the affected individuals themselves) is that the affected individuals consider themselves to be sick in Huntington’s disease despite that clear neurological signs and symptoms of the disease is not yet present. Consequently, this disease identity frames the question of the normal and pathological slightly different that current diagnostic standards on when an affected individual are to be considered sick in HD (Hagen, 2011; Hagen, forthcoming). My ethnographic material indicated that the importance of Facebook is dependent on space, specifically on intrinsic spatial aspects of the Internet. It is the nature of Internet´s virtual space that underlies those aspects that was accounted for above. This importance of space points towards an inseparability and interdependence that exist between the spatial and social realms of human life (Soja, 1996). David Harvey, who singled out time-space compression as one of the hallmarks of the capitalist society, also states the inseparability of spatial and social practices, where ‘spatial practices derive their efficacy in social life only through the structure of social relations within which they come into play’ (Harvey 1990: 222-223).
This raises the natural question of what kind of spatial formation do we encounter in conjunction to the Internet and Facebook? What are its properties? And what kind of transformations might these properties give rise to?
Following Lefebvre, as well as Deleuze and Guattari, Facebook can be understood as a form of a social space (Lefebvre 1991) that, due to the hypertexted, networked and the variable features of the Internet, might articulate rhizomeric characteristics (Miller 2011; Deleuze and Guattari 2004). As shown in the ethnographic passages above, it was these rhizomeric features of the Internet that enabled this individual to connect and to obtain support, as well as to share numerous experiences that were essential for a construction of the HD+ disease identity (Hagen, forthcoming). Currently, genetics is partly transformed from being a diagnostic tool, used in the presence of clear and visible symptoms, to a predictive and preventive tool. When this predictive tool is implemented in mainstream health-care, issues like those presented above (normality, abnormality and disease identity) can become relevant in a wider societal context. With regards to the issue of STS and its practices, as well as its fields, one question that might arise concerns the kind of relations STS might face if/when performing research within such social spaces as Facebook. What kind of relationships might STS scholars face, as the (Facebook)crowd becomes an object of study?
New relationships with the (Facebook)crowd?
The impact of Internet might be seen in terms of a decentering with regards to both the biomedical laboratory and the patient organization, which constitutes two important two fields of study in relation to biomedical knowledge production and expert/lay-man/patient interaction (e.g. Latour and Woolgar 1979; Rabeharisoa and Callon 2004). In a similar way as crowdsourcing might decenter scientific knowledge production from the laboratory to the general public, bringing in the Facebook(crowd) might decenter lay-men/health activism from the patient organizations to more spontaneous grass-roots movements that are facilitated through the rhizomeric social space of new social media. Consequently, in order to investigate these emerging grass-roots movements, STS (and other disciplines who take an interest in these issues) might have to develop new online relationships with the (Facebook)crowd.What kind of relationships is then prevailing on Facebook and in what way might these relationships be seen as “parasitic”? In what follows, I will make an initial tentative exploration of this issue that revolves around the notion of friendship and the public/private dichotomy.
As noted by Graham Meikle and Sherman Young, friendship becomes something of a metaphor when it comes to Facebook, meaning only ‘other Facebook users with whom I am connected to on Facebook’. Many users are likely to have many Facebook friends whom they never have meet outside this social space, through a face-to-face interaction in real life, but with whom they only interact with within and through this social space (Meikle and Young, 2012: 74-75). Nevertheless, metaphor or not, in order to investigate the eventual or emerging impact of Facebook and other social networking sites, it might be necessary for scholars to take residence under the banner of Facebook-friend within this rhizomeric social space where ‘the notions of what is private and what is public are fuzzy and there is no clear-cut public/private dichotomy’ (West, Lewis and Currie, 2009:624). That is, in order to explore, capture and investigate the interaction that takes place within this social space, scholars might have to make Facebook-friends and become a member within groups formed on Facebook in order to perform participant observations. A premise that might generate “parasitic” (Serres, 1982) relationships with the (Facebook)crowd due to the fuzziness between private and public that characterizes this social space. As users who are acquainted with Facebook might know, the information displayed on the site is regularly visible for all those users with whom you have added as Facebook-friends. Moreover, due to the rhizomeric features of this social space, the possibility to obtain more information than what is displayed on the “The Wall” (the part of Facebook where you can see the updates made by your friends) of every user is also present as the site provides additional information about every user through his/hers personal page.
Consequently, this rhizomeric social space fosters a form of one-to-many relationship which, compared to the one-to-one relationship that can be seen in for example in a semi-structured interview, distorts the distinction between what is private and what is public. And it is this one-to-many relationship that might turn the relationship between STS and the (Facebook)crowd into a “parasitic” relationship that might also contain ethical aspects, especially when we on Facebook encounter investigative fields that generates highly personal accounts and narratives. In contrast to the one-to-one and personal face-to-face contractual (for example in the form of an informed consent) interaction between the researcher and informant that takes place within the setting of an interview, the distant one-to-many relationship on Facebook does not readily transform itself into a setting wherein accounts and narratives might be obtained for issues of research. The ethnographic material presented above was obtained through the one-to-one relationship of a semi-structured interview but if I would have decided to include some of the accounts and narratives displayed on a Facebook-group, I would have been forced to either directly or in retrospect announce these purposes to the group and thereby running the risk of becoming what Michel Serres have denoted as a parasite or ‘the third’ that in relation to its host (the Facebook-group in question) ‘produces disorder and who generates a different order (Serres, 1982: 3, 19). In this case, such a disorder would of course result in a disruption of the exchanges that take place within this Facebook-group, caused by my mere presence as a researcher within the group. And to stay quiet and not to announce my intentions would naturally be a presence that would have exploited the one-to-many relationship within this social space in a highly unethical way.
However, despite the kind of “parasitism” that might be located within this one-to-many relationship, the STS-scholar (or anyone who decides to perform research within this social space) is nevertheless not the only one ‘who have the last word’ (Serres, 1982: 3) as another “parasitism” might reside in the hands of those who controls the spatial formation itself. Bringing in the (Facebook)crowd constitutes automatically an invitation of Facebook itself, transforming the bivalent accounted for above into a trivalent logic (Serres 1982: 23) between researchers, participants and companies such as Facebook, Google etc who runs this social spaces in accordance with a commercial logic. As STS and other scientific disciplines come to utilize Internet in order to investigate issues like those accounted for in this paper, this aspect and its potential consequences might be worth to consider.
References
Deleuze, G., Guattari, F. (2004) A Thousand Plateaus. London: Continuum.
Hagen, N. (Forthcoming) “The Cultural Paradox of Predictive Genetic Testing”, Ethnologia Europaea.
Hagen, N. (2012) “A Molecular Body in a Digital Society”, in S. Lundin, M. Liljefors, A. Wiszmeg (Eds,) An Atomized Body. Lund: Nordic Academic Press.
Hagen, N (2011) “I gränslandet mellan genotyp och fenotyp. Motsägelser i samband med prediktiv genetisk testning, Socialmedicinsk tidskrift, 3: 266-272.
Havey, D. (1990) The Condition of Postmodernity. Malden: Blackwell.
Latour, B., Woolgar, S. (1979) Laboratory Life. London: Sage.
Lefebvre, H. (1991) The Production of Space. Malden: Blackwell.
Meikle, G., Young, S. (2012) Media Convergence. Basingstoke: Palgrave Mcmillan.
Miller, V. (2011). Understanding Digital Culture. London: Sage.
Rabeharisoa, V., Callon, M. (2004) “Patients and scientists in French muscular dystrophy research”, in S. Jasanoff (Ed.) States of Knowledge. Abingdon: Routledge.
Soja, E. (1996) Thirdspace. Malden: Blackwell.
Serres, M. (1982). The Parasite. Minneapolis: University of Minnesota Press.
West, A., Lewis, J., Currie, P. (2009) “Student´s Facebook “friends”: public and private spheres”, Journal of Youth Studies, 12(6), 615-627.
bioculture(s) 