Abstract
At the end of the twentieth century, both social and genetic scientists anticipated that the decoding of the Human Genome would discredit any biological significance or scientific merit ascribed to lay, skin-color-based categories of race. However, at the outset of the twenty-first century, during the so-called “Decade of the Genome,” elite genomic scientists again emphasized race in their research. Given that race is a category that does not hold up to scientific scrutiny, and is mired in past scientific abuses, this was an unexpected turn. Race Decoded: The Genomic Fight for Social Justice focuses on this surprising development. In a well-researched, fascinating, and meticulous study, Catherine Bliss unravels the motivations that genetic scientists bring to their work, and how these motivations caused them to return to considerations of race.
Drawing on interviews with renowned scientists including current NIH director Francis Collins and Craig Venter, who participated in the initial sequencing of the human genome, Bliss contends that genetic researchers’ return to an emphasis on race belies simplistic critiques about naïveté or racism. Bliss finds that geneticists have focused on race in the pursuit of social justice; in particular they were concerned with previous minority exclusion from health research and persistent health disparities among racial/ethnic minority groups. Bliss shows that genetic science’s move away from a “race color-blind” to a “race-positive” orientation was purposeful and shaped by scientists’ acknowledged race-conscious research agendas.
In Race Decoded, scientists provocatively admit that their research is motivated by their personal experiences with, and concerns about, racial inequality. In doing so, Bliss’ informants honestly acknowledge that scientific practice is neither fully objective nor free from cultural, political and social concerns and processes—a central critique that science-technology has made when analyzing scientific practice. For instance, in interviews geneticists exhibited awareness of their responsibility for framing their research so that it is not misunderstood nor used in destructive ways (see Chapter Six in particular). In these reflexive accounts the elite scientists acknowledge the key role of interpretation in the presentation of scientific “facts”—another central finding in science-technology studies. As a result, these scientists express a desire to have an active role in this process as public advocates and educators. In other words, they acknowledge their responsibility for the social implications of their work.
Despite their lofty goals and enthusiasm for genomic science’s ability to ameliorate health disparities, Race Decoded also uncovers tensions between the views expressed by the scientists about race and biology, and how they engage in their scientific practice (see in particular Chapter Five). For instance, scientists generally believe that lay racial taxonomies do not have much scientific validity (although Chapter Four does document a variation of opinion by scientists regarding how much lay racial taxonomies are useful for understanding race and health). At the same time, genetic scientists do not want to eradicate all taxonomies from their research as many think such classification can be scientifically useful, particularly taxonomies based more on ancestry and continents than in lay notions of skin color.
However, lay notions of racial groups matter in the research context. First, these scientists are aware of the importance of identity, particularly for historically marginalized groups. As a result, Bliss argues, they make use of lay categories of racial identity in their research as a sign of respect. Race, in these instances, becomes an imperfect but socially necessary proxy for ancestry in genetic scientists’ work. Second, genetic scientists confront how to use federally mandated racial categories for research given that the categories were instituted precisely to address past racial exclusion in medical/scientific research. Research scientists, as documented by Race Decoded, were similarly motivated to address racial health disparities; however, given their empirical knowledge that lay notions of race do not match biological categories, and particularly do not make sense in a global context, these scientists criticize the mandated inclusion of these categories despite their support for said inclusion. In fact, Bliss finds that the more scientists support inclusion, the more critical they are of the federal standards. Significantly, Bliss believes that scientists may employ the federally mandated categories in their reports, but this does not impact how they construct and conduct their research. Yet, they pragmatically and ambivalently adopt the very racial categories they view as not supported by biological evidence.
Race Decoded is an important contribution to the scholarship on science and race as it treats geneticists as complex social actors, and in doing so complicates narratives regarding the roles science and scientists play in producing and reproducing race and inequality. Herein, genetic scientists are rescued from critiques that assume they believe and promote biological notions of race, and that they are not concerned about the social implications of their work. At the same time, it is not until the concluding chapters that Bliss fully addresses the significant limits to these scientists’ motivations and views. First, despite their claims of taking responsibility for the implications of their research, Bliss acknowledges that, for the most part, these scientists exhibit what she labels a “weak response” to problematic developments in, and uses of, genetic research on race. Second, and perhaps more troubling to social scientists, is the way in which these genetic scientists use interdisciplinary collaboration to further bolster their work and their expertise. In particular, although Bliss finds that they purposefully pursue interdisciplinary collaboration, embracing the need to work with social scientists, they ultimately view genomics as the solution to alleviating racial inequalities and health disparities. Thus collaboration with social scientists results in a hierarchy of knowledge, casting legitimacy on geneticists’ work and perpetuating the genetic scientists’ view of themselves as the experts. Despite their acknowledgement of the social construction of race, concomitant racial health outcomes, and past misuses of science, genetic scientists end up promoting a narrow biological and genetically deterministic approach to health and illness, while also claiming that they should be trusted to pursue ethical and socially-conscious research.
In the end, Race Decoded provides a nuanced and complex story about the role of genetic scientists and scientific studies of race at the dawn of the twenty-first century. While it may be a bit too dense for lower-level undergraduate courses, this book is an important read for anyone interested in race, genomics, medicine, and scientific practice. Since genomics remains central to current medical research funding priorities, it behooves us to know more about the complex interactions among individual motivations, professional groups, institutional forces, and social policies, as well as the historical racial legacies which shape the promises and perils of genetic science in the twenty-first century. Race Decoded is an important contribution to such understandings.