In my work on rare diseases, I once met a young woman with an as-yet unnamed genetic disorder. She told me that, on Facebook, she had recently befriended someone living on the other side of the globe who had the same genetic variation. As chronicled in my forthcoming paper “Patients’ perceived values of individualized medicine,” (Halverson et al.), the woman told me that despite having a deep love for her children and husband and despite only knowing the other individual electronically and for under two months, she at times felt closer to and more comfortable with the other patient than with her own family.

What is Biosociality?

This kind of connection is a new and increasingly common biologically-based form of socializing called biosociality. Biosociality happens when people diagnosed with a disease or condition form a self-identity around the diagnosis. Those afflicted can reflect on themselves as a specific kind of person, find others with the same disorder, and even develop a sort of kinship with that group.

In 1996, the anthropologist Paul Rabinow predicted in his work titled Essays on the Anthropology of Reason that biosocial connections, like the one formed by the young woman, would eventually emerge around infinitesimal, single-allele variations in our DNA [Rabinow 1996:102]. Less than two decades later, there are numerous patient groups centered on rare diseases and still others that are centered on the type of minute genetic variations that Rabinow foresaw. For instance, the sociologist Daniel Navon has been studying the emergence of biosocial organization focused on the 22q13 microdeletion.

What makes biosocial groups central to research?

While these groups do provide support and sociality, they often also advocate for research on the group member’s conditions – their political and biological identities merge. In fact, these groups have proved central to contemporary biomedical research for five major reasons:

1. They fundraise and lobby. The National Organization of Rare Diseases even managed to secure federal funding for research on unprofitably small-scale “orphan diseases” that would otherwise not have been able to sway profit-minded researchers.

2. Since they often represent groups of individuals with rare diseases, they are a unique resource of otherwise hard-to-find patients. The sociologist Aaron Panofsky notes that without recourse to biosocial groups, “the limited availability of patients is one of the significant barriers for research on rare genetic disorders” (2011:38).

3. They raise public awareness through mass- and social-media presence. Think, for instance, of the Ice Bucket Challenge of 2014. This type of attention can prompt significant developments in research programs.

4. Some advocates actually become experts in their own fields. Some co-author papers with researchers about discoveries regarding their diseases. For instance, Sharon Terry, the mother of a child with a rare disease and founder of a biosocial advocacy organization, received coauthorship on the article that first linked the disease to a gene. Others become researchers in their own right. Last year, two major publications, The Atlantic and Nature ran stories that documented how patients contributed significantly to the science behind their diagnoses.

5. Biosocial groups act as novel networking sites for otherwise unrelated projects. For instance, Heath et al. [2004] demonstrate how the advocacy projects of an organization focused on epidermolysis bullosa (a skin disorder) brought together the US military and pharmaceutical companies. All three groups were interested in promoting research on the condition – the patient advocates for their own health, the military for its implication for war wounds, and the pharmaceuticals for more common conditions like burns and diabetes-related wounds. In this way, a relatively small disorder became the focus of huge and normally unconnected institutional forces.

But who determines what counts as normal and ideal?

Not all biosocial groups work to promote the medicalization of their conditions, though. The Deaf community and many groups of individuals with heritable dwarfism oppose medical interventions, such as cochlear implants and orthopedic surgery, as discussed in this 2005 piece on “Flexible Eugenics” by Taussig et al. Since 2011 at least one advocacy group, Saving Downs, has even been bringing formal complaints to the International Criminal Court, contending that prenatal screening (as leading to abortions) constitutes a genocide against persons with Down syndrome.

As individual and group identity become increasingly linked to biological and medical categories, what counts as normal and ideal takes on a new valence. Biosocial communities – such as Autism Speaks, the Deaf community, the Little People of America, Saving Downs, and the neurodiversity movement – may actively work against the growing influence of biomedicine. Here we can see the potential power biomedicine has to whitewash and legislate human bodies at a strikingly intimate and existential level. By becoming involved in their biologically-defined identities, biosocial groups are able to affect science and policy according to their own perceptions of their best interest, rather than by relying on “disinterested” experts.

While in many instances, biosocial groups have pushed medical research ever forward in an attempt to ameliorate their conditions, they also fight for their rights in other ways. Nonetheless, without first seeing themselves as members of the same, biologically defined group, these individuals could not advocate for themselves as a class. As biotechnology and medical interventions continue to develop, we can only expect that biosocial groups will grow in step, becoming more numerous, more complex, and more central to daily and political life.

Further Reading:

Image credit: Duncan Hull, via Flickr

About The Author

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Colin Halverson is a PhD candidate in the Department of Anthropology at the University of Chicago. His research focuses on language, meaning negotiation, medical ethics, and epistemic uncertainty in clinical genomics.