Alondra Nelson

Technicolor : race, technology, and everyday life

The cultural impact of new information and communication technologies has been a constant topic of debate, but questions of race and ethnicity remain a critical absence. TechniColor fills this gap by exploring the relationship between race and technology. From Indian H-1B Workers and Detroit techno music to karaoke and the Chicano interneta, TechniColors specific case studies document the ways in which people of color actually use technology. The results rupture such racial stereotypes as Asian whiz-kids and Black and Latino techno-phobes, while fundamentally challenging many widely-held theoretical and political assumptions. Incorporating a broader definition of technology and technological practices--to include not only those technologies thought to create revolutions (computer hardware and software) but also cars, cellular phones, and other everyday technologies--TechniColor reflects the larger history of technology use by people of color. Contributors: Vivek Bald, Ben Chappell, Beth Coleman, McLean Greaves, Logan Hill, Alicia Headlam Hines, Karen Hossfeld, Amitava Kumar, Casey Man Kong Lum, Alondra Nelson, Mimi Nguyen, Guillermo Gomez-Pena, Tricia Rose, Andrew Ross, Thuy Linh Nguyen Tu, and Ben Williams.

Ten simple rules for responsible big data research

The use of big data research methods has grown tremendously over the past five years in both academia and industry. As the size and complexity of available datasets has grown, so too have the ethical questions raised by big data research. These questions become increasingly urgent as data and research agendas move well beyond those typical of the computational and natural sciences, to more directly address sensitive aspects of human behavior, interaction, and health. The tools of big data research are increasingly woven into our daily lives, including mining digital medical records for scientific and economic insights, mapping relationships via social media, capturing individuals’ speech and action via sensors, tracking movement across space, shaping police and security policy via “predictive policing,” and much more.

The Longue Durée of Black Lives Matter

Black Lives Matter was first articulated just a few years ago, but it has been the leitmotif of antiracist struggles for generations. The Movement for Black Lives extends the work of previous movements that challenged forms of oppression that act on Black bodies with impunity. It should be understood in the context of Ida B. Wells anti-lynching campaign, Fannie Lou Hamers reproductive justice demands, and the Black Panther Partys health activism. The 50th anniversary of the Black Panther Party is an occasion to recall that its work confronted the callous neglect and the corporeal surveillance and abuse of poor Black communities. Similar demands have been the centrifugal force of social movements that for centuries have refused to have Black lives cast beyond the human boundary.

“Genuine Struggle and Care”: An Interview With Cleo Silvers

Philadelphia native Cleo Silvers moved to New York City to take up a VISTA (Volunteers in Service to America) post in the mid-1960s. In the course of her VISTA service, she was awakened to the extreme deprivation faced by many Blacks and Latinos in Manhattan and the Bronx, New York. This experience also occasioned a political awakening in Silvers, who sought to systematically understand the social and economic inequality she witnessed and how to upend it. Following her VISTA service, she worked as a community mental health worker at Lincoln Hospital in the Bronx. She also joined the Black Panther Party in Harlem, New York. As a Panther, her work included conducting neighborhood health surveys and door-to-door testing for sickle cell anemia and lead poisoning and being a patient advocate in its clinic. Silvers later became a member of the Young Lords Party and played a role in its takeover of Lincoln Hospital in the South Bronx. In more recent years, Silvers served as executive director of For a Better Bronx, a community-based social and environmental justice organization. She recently retired from a position as a community outreach director at a leading New York City medical center.

Inclusion: the politics of difference in medical research

In Medical Apartheid, journalist Harriet Washington presents a harrowing survey of the abuse of African Americans at the hands of medical researchers, from the era of racial slavery to the present. Blacks in the US have borne the brunt of this distinctively intimate and grave exercise of power, Washington maintains, because they have an experience of disproportionate social vulnerability as the enslaved, as the institutionalized, and as the impoverished that constituted them as ‘accessible’ to researchers. Despite this bleak genealogy, Washington surprisingly exhorts readers especially those members of minority groups to volunteer as clinical research subjects; its closing page provides information about resources for said purpose. Medical Apartheid leaves little doubt about the historical reasons why some blacks remain apprehensive of encounters with medical authority, ranging from hospital visits to genetic screening. However, a question left unanswered by this work yet begged by Washington’s optimism about minority participation in biomedical research is what developments make it conceivable that readers of this daunting account of experimental maltreatment might feel compelled to enlist in clinical studies. For African Americans, in particular, how has the historically risky business of medical experimentation now become a risk worth taking? Marshaling interviews, policy analysis, archival research and deft theoretical analysis, sociologist Steven Epstein’s masterful study, Inclusion: The Politics of Difference in Medical Research, reveals that what appears to be a paradox of the Washington book in fact reflects the successful formation of a ‘biopolitical paradigm’. Biopolitical paradigms are assemblages of theories, conventions and regulations that stipulate how individuals and populations come to fall under the twin purview of bureaucratic and biomedical regimes. They are the institutional and organizational vectors for the ‘politics of life itself’ (Rose, 2001), for the ways in which the body, biomedicine and healthcare come to be ‘appropriate and important site[s] for state intervention and regulation’ (p. 17). One particular biopolitical paradigm ‘inclusion-and-difference’ is the focus of Epstein’s deservedly awardwinning second book. Inclusion-and-difference refers to ‘research and policy focus[ed] on including diverse groups as participants in medical studies and measuring differences across those groups’ (p. 17) in such a way as to permit the production of categorical and comparative biomedical knowledge (e.g., ‘Blacks are three times more likely than whites to die from heart disease’). The inclusion-and-difference paradigm emerged in the 1980s, Epstein suggests, from a convergence of state policies, research protocols and politicking all aimed at making the practice of biomedical inquiry more ‘democratic’ by extending

The physician–patient relationship in the age of precision medicine

The completion of the Human Genome Project was heralded as a step towards “personalized medicine,” offering patients individualized treatments based on genomic profiling. More recently, this vision has been eclipsed by the promise of “precision medicine” (PM), emphasizing benefits to patients from more precise diagnosis and treatment based on a range of biomarkers, along with data about patients’ environment, lifestyle, and behaviors. Cynics may object that PM is mostly hype and exists primarily in documents whose very titles—e.g., “Toward Precision Medicine”—indicate their promissory nature. We disagree. PM is part of a longstanding attempt to reorient medical diagnosis and treatment to take advantage of genomics research and other approaches leveraging big data, such as electronic medical record research and crowd-sourced health tracking. These efforts are progressively elaborating an increasingly coherent vision of a different kind of medicine. As the prospects and challenges of PM loom before us, there ais urgent need to consider its implications for the social organization of medicine, particularly for the physician–patient relationship.

What’s Biology Got to do With It?

Five experts, Dalton Conley, Roger N. Lancaster, Alondra Nelson, Kristen Springer, and Karl Bryant, debate the natural science turn in sociological research.