Biosociality

= Biosociality = toc

Definition
Biosociality is the formation of social relationships and the production of identity based on genetic or biological conditions. The advent of genetic technology and the increasing rise of biomedicine have opened the door to sociality being tied to biology, with the biology being framed by the social component. These new biosocial identities can lead to changed meanings and relationships among community members and also with societal institutions, including transformation in self, changed management of illness, and empowerment. For example, biosocial individuals can discard guilt and grasp the hope that their genetic diagnosis will lead to a possible cure via genetic engineering. Alongside its uses in social theory, biosociality incorporates support, public activism and education within individuals, families and communities.



From a medical anthropology perspective, differences in socioeconomic status affect access to healthcare, and from a biosocial perspective also affect access to resources. Biosocial communities are often formed through electronic means and require access to a computer or Internet. The digital divide may lead to further marginalization, or exclusion, of individuals with genetic diseases.

Increased understanding of genomics and gene expression has transformed racial differences. Racial ideologies are incorporated into biosociality via genetic engineering. If a genetic disease is found in a particular population, the population becomes a resource. Affected individuals might share their genetic identity with other members of their group while the population as a whole is sought for research value. For example, testing for sickle cell anemia reinforces racial categories based on higher susceptibility, or risk, in the African American population.

Biosociality is an objective grouping of individuals based on genetic disease. Groups are formed based on individual experience although the diagnosis is based on genetics. Does knowledge of genotype or group identity change the subjectivity of the disease? Each individual’s interpretation of their experience may be changed positively or negatively due to biosocial group dynamics and psychological relationships. Group identity and subjectivity are both defined at the molecular level. Empowerment results from biosociality as families discover biological explanations, search for research and cures, and receive psychological support.

History
Biosociality was coined by Rabinow in reference to social identities being formed based on genetic diagnoses. Genetic knowledge is produced in clinics, research laboratories and counseling offices. Genetic citizenship encapsulates genetic knowledge with social identity, and further includes political activism. Genetic citizenship provides the intersection between medical anthropology and science and technology. In broader strokes, biological citizenship includes biological conditions and increased understanding of disease processes and therapies. Biological identity explains feelings of unhappiness, an ailment, or a predicament, while genetic identity is based on the molecular level and DNA. Biosociality enhances individual identity, both biologic and genetic, through collectiveness and a shared group identity. Although the term biosociality was initially used to refer to the potential implications of the Human Genome Initiative, its current usage connects science and technology (biology) with anthropology (social).



Case Studies/Examples
Discovery of the gene for Huntington Disease has led to genetic screening. Screening is provided to asymptomatic patients. During pretest counseling, the patient is informed of possible outcomes as well as accuracy of the test and limitations. In addition to neurologists and genetic counselors, social workers, psychiatrists and psychologists are involved in the testing process. Those undergoing genetic screening are also evaluated in terms of coping resources, support from spouses, friends and family, and participation in support groups. The social relationships formed based on this genetic disorder connects their embodied experiences with their genetic difference. Through focus on the social aspect, this example of biosocialiy focuses on support. Huntington Disease Society

The motto of Genetic Alliance ‘Advocacy, Education and Empowerment’ highlights partnerships between individuals, families and their communities, educational resources and informed decision making. Information on genetic diseases and organizations which provide support are readily searchable. Genetic Alliance provides the tools for biosociality by supplying access to resources, information and support. From an anthropological perspective this opens the door to empowerment as individuals understand their disease. The focus of understanding for a disease is not on genetic causes, but on coping mechanisms, patient care or even measures to slow down disease progression. [|Genetic Alliance]

A further example of biosociality is from the 1970s as parents of children with epidermolysis bullosa (EB) arrived in Washington DC to obtain federal funding for research efforts. Their demand for recognition through activism and objectification of their blistered children intersects with their embodied experience. In addition to research, the advocacy group convinced the NIH to create a registry of tissue samples to promote EB research. Enhanced social relationships and public activism promote the exploration of meaning of the disease. [|DEBRA]

In 1995 PXE International was founded to promote research activities and provide support for individuals affected by pseudoxanthoma elasticum (PXE). In addition to the formation of advocacy and support groups, PXE International maintains a collection of tissue samples and family histories rather than a research lab. PXE International controls access to samples and information and therefore controls production of knowledge. This reconfiguring of the traditional boundary between individuals and society is based on the relationship between knowledge and power. The families of patients with PXE are gaining access to more resources through their alliance with each other and with researchers. This example of biosociality demonstrates how networks of social relationships comprise a coping mechanism for shame and stigma. [|PXE International]

Related Pages/Terms
Genetic citizenship Biological citizenship [|Paul Rabinow] [|Nikolas Rose]

Online Resources
Ian Hacking on Biosociality

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Genetic Alliance provides the tools for biosociality by providing a network of information and resources.

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REVEAL Alzheimer’s study demonstrates the empowerment of individuals with access to knowledge.

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Dorothy Roberts, Professor at Northwestern University, discusses the connection between biomedicine, biotechnology and the formation of identity.

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[|National Organization of Rare Diseases (NORD)]

Discussion Board/Comments
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