Jennifer Singh is a sociologist of medicine, health, science, and technology. Her research is informed by the interdisciplinary field of science, technology, and medicine studies (ST&MS), which views science and technology as the products of particular social, cultural, political, and historical contexts. Within this framework, she investigates how material conditions and cultures shape scientific inquiry as well as the politics and social consequences of biomedical knowledge and technologies. Her primary research uses qualitative methods, which is combined with her expertise in molecular genetics, public health, and sociology. The scope of her current research examines the social and scientific impacts of emerging technologies used to understand the causes, diagnosis, and meanings of autism. She is currently pursuing several projects that address this line of inquiry.
The purpose is to develop a digital-visual map of autism services in metropolitan Atlanta, GA that can be used to document and expose autism service disparities for research and educational purposes and a practical tool that care coordinators can use as they navigate services for underserved families. The project will consist of three phases.
In the summer of 2015, I began an ethnography investigating the inequalities to autism diagnosis and service in metro Atlanta, GA. This project aims to investigate what individual, institutional, and structural barriers contribute to autism inequalities and how they interact with intersecting inequalities based on race, ethnicity, socio-economic status, and gender. The project is a multi-sited ethnography designed to investigate four interlocking social processes: 1) clinical diagnosis; 2) special educational services; 3) social and cultural assistance; and 4) raising a child with autism. This project will trace unexpected social and structural formations across and within multiple sites of activity that will help contextualize and reveal the complex and intersecting mechanisms involved in shaping autism inequalities, which can inform the development of innovative intervention strategies.
The proposed study aims to investigate the impacts of Covid-19 among low-income African American families who have a child with autism spectrum disorder (ASD). It seeks to examine how social and economic factors, such as living in a single parent or multi-generation household, relying on public health insurance or public transportation, living below the poverty line, working in the service industry, or losing employment due to Covid-19, disproportionately affects African American children with ASD and their families. To answer these questions, researchers plan to conduct a survey and interview with 20 caregivers of a child with ASD who are living at or below the poverty line, Black and/or African American, and rely on public health insurance. Researchers will conduct a survey to measure disruptions in services, access to remote services, and a child’s and caregiver’s mental and emotional health.
Multiple Autisms: Spectrums of Advocacy and Genomic Science (University of Minnesota Press, Jan 2016)
This book maps out the social history of parental activism in autism genetics, the scientific optimism and failure of finding a gene for autism, and the various meanings attached to autism in the context of knowledge produced with emerging genomic technologies. Multiple Autisms reveals how parent advocates not only pushed for more autism science but also organized and governed autism genetic research initiatives. This in turn, influenced a shift in scientific practices and created new fields of exchange among scientists and families who participate in genetics research. The analysis also pays close attention to the social impacts of translating autism through a genomic lens by taking into account the various meanings and subjectivities developed based on autism genomic knowledge. This book demonstrates how despite the billion-dollar pursuit of unraveling the genetics of autism, the utility of genomic information has limited value in the immediate lives of people living every day with autism. Ultimately, Multiple Autisms argues that the persistent focus on genetics and now genomic science is fragmenting, reclassifying, renegotiating, and reinventing the social and scientific meanings of autism rather than determining a specific etiology of a single disease.
Participation in Genetics Research
A second line of inquiry investigates the social and moral implication of participating in genetics research based on over 25 interviews with parents who participated in a privately owned autism genomic database, the Simons Simplex Collection (SSC). Based on this research, she published an article, “Narratives of Participation in Autism Genetics Research,” in Science, Technology and Human Values (July 2014). This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research.
There are many aspects of the autism diagnosis that I investigate, including the work parents must engage to get a diagnosis for their child, how the diagnosis of autism operates as a political mechanism for educational services, as well as the ways in which an autism diagnosis serves as a form of identity and/or resistance for autistic communities. In 2011, I published a chapter in Sociology of Diagnosis: Advances in Medical Sociology, titled “The Vanishing Diagnosis of Asperger’s Disorder.” This chapter demonstrates how the 1994 addition of Asperger’s disorder in the DSM-IV opened a gateway for new social identities to become developed and embraced beyond the diagnostic boundaries. Based on interviews with adults who are diagnosed or self-diagnosed with Asperger’s disorder (AD), this chapter shows how the changes to eliminate AD from the DSM-5 threaten the assertions of a positive Asperger identity. This could potentially enhance stigma experienced by people with AD and reduce opportunities for self-disclosure. More importantly, this paper demonstrate how regardless of the removal, Asperger identity must be considered within the broader context of people’s everyday lives and how experiences in social interaction and communication can be strong agents of identity construction.
Parenting Work and Autism Trajectories of Care
I also recently had a paper accepted that theoretically conceptualizes parenting work and autism trajectories of care. This concept articulates how parents embody their child’s autism through creative and proactive forms of parenting work, such as seeking a diagnosis, participating in genetics research, becoming an autism expert, serving as a liaison between various medical and educational professionals, and learning to readjust expectations for the future. This paper has been accepted in Sociology of Health and Illness, a leading international journal, which publishes sociological articles on all aspects of health, illness, and medicine.
Commercialization of Genetic Testing
In the summer of 2013, I started a new project that investigates the commercialization of autism genetic testing. I am conducting a content analysis of websites, press releases and news articles of over a dozen private companies that are offering an autism genetic testing. Many of these genetic tests are based on rare, and in some cases spontaneous, genetic mutations (as opposed to common and inherited mutations). The genetic risk of autism is detected using new genomic technologies, which can scan over 100,000 genetic markers in one test. This project will investigate the problems associated with the commercialization of autism genetic testing, such as the validity of scientific claims; conflicts of interests in academic and private partnerships; and the bioethics of commercializing knowledge generated through public research investments and altruistic donations of genetic material.
Collaboration with Atlanta-Based Scholars
Break the Cycle of Autism – Addressing and bringing attention to promoting equity in autism and work towards sustainable solutions to disparities within our home countries and on an international level by working with stakeholders in the community.
Race and Racism in Contemporary Biomedicine Working Group – Interdisciplinary and Cross-Institutional collaboration among faculty, students, and researchers in Atlanta-based Institutions.
Atlanta Autism Consortium – Organization that works to increase understanding and communication across various stakeholder communities related to autism.
Hughes Spalding Autism Clinic – Dr. Singh is collaborating with Dr. Leslie Rubin, MD and the clinical team at Hughes Spalding Children’s Hospital to conduct an ethnography on multi-level inequalities to autism diagnosis and services. She is also conducting a caregiver survey to assess the quality of care offered by the Autism Clinic.