It is almost a truism nowadays to begin a text on the social and cultural aspects of genetics etc. with the words:”The developments within genetics etc.” and I will refrain myself even though it is hard (just look at the many texts produced within the social and cultural sciences and you will notice all sorts of varieties of the example presented above). However, what theoretical concepts have emerged during the last 10-15 years of research on these social and cultural aspects? One of the most influential concepts was originally coined by the American anthropologist Paul Rabinow, who already in 1992/1996 talked of an emerging biosociality, within which “it is not hard to imagine groups formed around the chromosome 17, locus 16, 256, site 654, 376 allelle variant with a guanine substitution (Rabinow 1996). The concept of biosociality was forged by Rabinow as a way to think through what kind of sociality might emerge as our knowledge of what a disease is were undergoing a process of considerable change. The concept were meant to stand in a contrast to the concept of socio-biology (see earlier posts: Biopolitcs) and to capture a “new” kind of social interaction as a consequence of developments within genetics etc. (Gibbons & Novas 2008, Rabinow 2008). Within the social and cultural sciences much attention has been dedicated to understand how the reclassification of many diseases shapes individual, as well as collective, identity formation and to explore the implications of genetic knowledge for how individuals understands themselves or relate to others. Moreover, another objective was to explore how these “new” identities might, through patient organizations etc., create new relationships between scientific experts and lay-people, bringing forward new ways of knowledge production within the medical sciences (Gibbons & Novas 2008, Jasanoff 2006, Rabeharisoa & Callon 2006). The concept of Biosociality has been one of the most widely used concepts when scholars have tried to make sense of these rather diverse fields of inquiry.
It has now passed 14 years since Rabinow coined the concept, during which we have seen an even faster scientific development, as well as further developments in the societal and cultural context within which this scientific development takes place. We have for example seen how patient organizations have taken a more active role in their relation to science, not only influencing but also actively steering research. As an example of this development, we can just mention the Michael J. Fox Foundation (http://www.michaeljfox.org/) which has emerged as a major player in funding research on Parkinson´s Disease. When it comes to Huntington´s Disease, we have the Hereditary Disease Foundation (http://www.hdfoundation.org/aboutus.php), which was started by Dr. Milton Wexler in 1968 when his wife was diagnosed with Huntington’s disease, and it is now one of the major contributors on research on Huntington´s Disease. Within the context of autism, Chloe Silverman has been investigating how American parents to children affected by autism were able to steer research on the genetic basis of autism by forming their own gene repository; that is, by taking control of the DNA of which the scientists depended for their research (Silverman 2006). In the European context, Vololona Rabeharisoa and Michel Callon report that the interaction between scientists and patients in relation to French research on muscular dystrophy has infact enabled a transformation of the relation between patients and experts (Rabeharisoa & Callon 2006). This is then an extension of the former self-help groups which gave mutual support to individuals affected by disease, an extension in the form of new social health movements that are rewriting the intersection between the lifeworld of the affected individuals and the scientific system. In short, an increased participation through patient organizations is rewriting the balance-sheet between science and the everyday life of affected individuals in a way that can be characterized as a process of democratization.
So, during the last decade we have been able to, through the concept of biosociality, to give a better understanding of those transformations accounted for above, as well as to achieve a better general understanding of the impact of biology upon our society and culture. However, what are not contained in most accounts on these new biosocialities are the emergence of the new social media and the impact of the internet. For those who are active within the medical and biological sciences the phenomenon of Direct-to Consumer Genetic Testing is a familiar theme, as this subject has been the focus for a rather intense debate during the last years. I will not go in to deep on this issue here, leaving it for later posts, but I would like point out how biosociality might be seen as part of the business model of such companies like 23andMe etc. I will exemplify my thoughts by using three illustrations, starting with a 23andMe initiative from 2008 to democratize genetics (or participate actively) through new technical innovations that are meant to lower the price on genetic tests:
“By taking advantage of continuing innovation we are able to introduce a new chip that will give people more relevant data at a lower price,” said Anne Wojcicki, co-founder of 23andMe. “We are excited that we are opening doors for more people to learn about their health and ancestry and for more people to be able to participate in advancing research. It is important to democratize personal genetics and make it more accessible.” (https://www.23andme.com/about/press/20080909b/)
This initiative also involves the opportunity for participants to share their genetic information through a web-based networking platform:
“Our social networking platform enables members of the 23andMe community to connect with each other, find areas of common interest, and share information about themselves. We’re excited about growing our network more rapidly; making it widely available fast-tracks our research mission.” (https://www.23andme.com/about/press/20080909b/)
The other illustration comes in relation to a paper published 2010 by the company in which they have involved their customers as active participants in their research:
“This paper announces and validates a revolutionary way of conducting scientific research,” said Anne Wojcicki, 23andMe President and Co-Founder. “In this paper we confirm that self-reported data from our customers has the potential to yield data of comparable quality as data gathered using traditional research methods. We are excited about moving scientific research forward, faster,” continued Wojcicki (https://www.23andme.com/about/press/20100624/).
Another initiative that also tries to enroll the public as active participants in research is the Personal Genome Project which states their objective as:
“We believe individuals from the general public have a vital role to play in making personal genomes useful. We are recruiting volunteers who are willing to share their genome sequence and many types of personal information with the research community and the general public, so that together we will be better able to advance our understanding of genetic and environmental contributions to human traits and to improve our ability to diagnose, treat, and prevent illness. Learn more about how to participate in the Personal Genome Project” (http://www.personalgenomes.org/).
These three illustrations are meant to show how internet and new social media provides new opportunities for the creation of biosociality. In the case of 23andMe these new opportunities are obviously formed in a context of commercialization of certain genetic applications, but nevertheless I mean that we can see the emergence of a web-based biosociality. We can readily recapitulate Paul Rabinows original thought that in an emerging biosociety “it is not hard to imagine groups formed around the chromosome 17, locus 16, 256, site 654, 376 allelle variant with a guanine substitution (Rabinow 1996), but at this point of time biosociality is gradually becoming more and more a web-based phenomenon. This digital biosociality is of course not only to be seen in relation to companies such as 23andMe or projects like the Personal Genome Project. In relation to Huntington´s Disease, Facebook is progressively more becoming a natural meeting point for individuals who in various ways are affected by the disease. Here we can use the Huntington Awareness page on Facebook as an example of one of these digital meeting points for affected individuals. Being a rare disorder (in Sweden there are about 1000 individuals who are considered to be sick in the disease), Facebook and other social media provides the opportunity for affected individuals to connect over physical borders to share their experiences of the disease, as well as building a web-based community in a way that they might not been enabled to do without the opportunities provided by social medias such as Facebook.
Biosociality has then during the last years gone digital which means that many of the processes that were accounted for in the former sections might be web-based in the future. What are the implications of this development? Well, that is a question that is still awaits more research by social and cultural scientists, but I would like to point out the importance of taking advantage of the knowledge that is already out there, brought home by our colleagues in other fields of inquiry, who for many years have been investigating the impact of new social media on various societal and cultural spheres.
Gibbon, S. & Novas, C. (2008).”Introduction” in Biosocialities, Genetics and the Social Sciences –Making Biologies and Identities. London: Routledge.
Jasanoff, S. (2006). “The idiom of co-production” in States of Knowledge. London: Routledge.
Rabeharisoa, V. & Callon, M. (2006). “ Patients and scientists in French muscular dystrophy research in Jasanoff, S. States of Knowledge. London: Routledge.
Rabinow, P. (1996) “Artificiality and enlightenment: from sociobiology to biosociality” in Essays on the Anthropology of Reason. Princeton: Princeton University Press.
Rabinow, P. (2008). “Afterword –Concept work” in Gibbon, S. & Novas, C. Biosocialities, Genetics and the Social Sciences –Making Biologies and Identities. London: Routledge.
Silverman, C. (2008). “Brains, pedigrees, and promises” in Gibbon, S. & Novas, C. Biosocialities, Genetics and the Social Sciences –Making Biologies and Identities. London: Routledge.