Paper short abstract:

This presentation will discuss how race, disability, and other social identifiers are co-constituted with pathologies by exploring racial disparities in attention-deficit hyperactivity disorder (ADHD) and oppositional defiant disorder (ODD) diagnoses.

Paper long abstract:

Recent studies have shown that attention-deficit hyperactivity disorder (ADHD) and oppositional defiant disorder (ODD), two disorders commonly diagnosed in childhood, are disparately diagnosed by race. One study has found that Black and Latino children are significantly less likely to receive an ADHD diagnosis compared to their White peers (Morgan et al. 2013), and another that Black and Latino children are more likely to receive an ODD diagnosis than an ADHD one (Fadus 2019). While both diagnoses have social and legal implications, an ODD one has greater consequences including increased barriers to disability accommodation in schools (Individuals with Disabilities Education Act 2004) and higher assessments of criminality in the juvenile justice system (Rockett et al. 2007).

What is considered clinically normal and abnormal is constantly being revised. For disorders like ADHD and ODD, which merely describe a set of behaviors, these revisions are even more frequent. How do race, disability, and other social identifiers influence the creation, distribution, and reinforcement of diagnoses? Past scholarship has looked at the medicalization of nonnormative behavior as a form of social control wherein deviant or unproductive behavior is reconfigured as a sickness that can thus be corrected. I believe that comparing the rates of diagnosis and perceptions of ADHD and ODD, informed by past scholarship on race, disability, and gender in the education and carceral system, could elucidate new connections between how pathologies and social identities are co-constituted. In this presentation I will discuss my preliminary outline for addressing these questions.

Paper short abstract:

What is the connection between the bio-behavioral data that are prospected from pregnant bodies in prenatal trials and speculative value? And who benefits?

Paper long abstract:

In clinical trials, enrolling a participant requires consent. Consent is one step in the data collection process that requires the extraction of raw data by organized labor. The data that is collected can include biological and behavioral samples like blood, fecal samples, breast milk, hair samples, cord blood, placenta, medical histories, and food diaries. In my recent book Weighing the Future I examined ongoing pregnancy trials in the US and UK. Pregnancy trials provide the bodies and data that are necessary for understanding epigenetic mechanisms connected to the developmental origins of health and disease. I situate pregnancy trials at the nexus of what I call racial-surveillance-biocapitalism. Black feminism and Black Marxism provide the theoretical framework for understanding how the power relations of exploitation that structured slavery remain relevant for understanding contemporary forms of exploitation in capitalist contexts across reproduction and in relation to race/racism. In this paper, I examine data that I did not get to include in the book to explore questions around the value of the pregnancy data beyond the clinical trials. To better understand forms of extraction and value in contemporary science, my analysis focuses on emerging discussions related to data sharing and intellectual property alongside my own data collection practices and the data collection processes of the clinical trial I ethnographically examined.

Paper short abstract:

With epigenetic testing companies as a case study, we demonstrate a shift in norms of expertise associated with the growth of self-diagnostics—not towards a democratization of knowledge as often heralded, but to the “scientist as influencer” promoted by today’s innovation infrastructure.

Paper long abstract:

In July 2023, a Business Today headline jubilantly proclaimed: “Harvard scientists unveil anti-aging drug combination to reverse aging in record time.” The article details the work of David Sinclair, a Harvard genetics professor whose team had “reprogrammed” cells to reverse cellular aging, as they described it. Sinclair’s work is part of the growing “epigenetic clock testing” industry, where companies have begun offering tests to give customers an estimation of their “true” or “epigenetic” age (as opposed to chronological age), as well as supplements and other interventions meant to reverse aging effects. This industry has been led by “scientist influencers” such as Sinclair, who have combined their social media presence and university prestige into substantial business interests – much as university tech transfer offices and innovation regulators of the past several decades have promoted. This paper presents an analysis of the phenomenon of the scientist-as-influencer, using epigenetic clock testing as a key site for understanding the evolving role of scientific experts and expertise in American public life. We base this analysis on an in-depth reading of the online world of epigenetic clock testing companies and leadership: on social media (Twitter/X and TikTok); company websites and public relations materials; customer review sites; and mainstream, business, and tech news sites. We argue that companies selling epigenetic age testing are drawing on shifting cultural narratives about aging and wellness, and are indicative of the future of biomedicine being encouraged by today’s “innovation infrastructure” in the United States – including regulatory and institutional infrastructure.