Monday, August 19, 2019

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Vernellia Randall
Founder and Editor
Professor Emerita of Law
The University of Dayton School of Law

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Why Racial Profiling Persists in Medical Research

In August, 2009, Time magazine published a story titled, “Why Racial Profiling Persists in Medical Research.” The article is not remarkable for any particularly new insights but stands as prominent example of a type of reasoning that typifies a powerful strand of current discourse about race, medicine and genetics. Curiously, the article began with a reference to Harvard professor, Henry Louis Gates, Jr., who had been arrested on his front porch the previous month by a Cambridge police officer. Gates is one of the country's most prominent African American intellectuals. The officer had responded to a call from a passer-by who had seen Gates and another black man seeming to force their way into the house. It later turned out that Gates had just returned from a trip to China and found the front door to be stuck and so asked the driver to help him force it open. The officer arrived on the scene after Gates had gained entry. He showed the officer his identification and explained that this was his home. Gates took umbrage at being questioned in his home, allegedly shouting, “This is what happens to black men in America.”A loud argument ensued which continued onto the front porch, and finally the officer arrested Gates for disorderly conduct. Shortly thereafter, President Obama caused a furor when he referred to the Cambridge Police Department's handling of the affair as ““stupid.” The famed “beer summit” ensued, with President Obama, flanked by Vicepresident Biden, hosting Gates and the arresting officer for a reconciliatory beer at the White House.

The article's brief reference to this event was used to juxtapose racial profiling as a “social” practice vs. racial profiling as a “scientific” practice. The former was clearly understood as “bad,” while the latter was presented as problematic but potentially useful. This established the frame for the entire article, which focused on the publication that July of a study by Kathy Albain et al. in the Journal of the National Cancer Institute (JNCI) involving a meta-analysis of data concerning more than 19,000 patients who participated in clinical trials involving treatments for a variety of cancers. As presented by Time, the major finding of the study was “that all other/actors being equal, black patients had on average a significantly lower cancer survival rate than whites.” The article takes this finding as emblematic of a strain of biomedical research whose use of racial categories is “borne out in studies that attribute health disparities between blacks and whites not to socioeconomics or access to health care alone but also to genetic differences between the races--a concept that implies that a biological category of race exists.”

Several things are going on here. First is the idea that when “all other factors” are held equal, observed racial differences in cancer are likely due to genetics. Second, being genetic, these “differences” are not “disparities” implicating socioeconomic forces. By implication, such purported genetic differences require biomedical interventions at the molecular level but do not require policy interventions to address questions of equity or social justice.

What then are these “other factors”? If we look at the actual article published by Albain et al., we see that its conception of “other factors” is encompassed by “[e]stimates ... derived from education category and income level as assessed by the linkage between patient zip code and the US census data.” As subsequent critical letters to the JNCI pointed out, Albain et al. presented a remarkably thin and fundamentally flawed approach to controlling for non-genetic factors. One letter from epidemiologists at the Centers for Disease Control, Duke University, and McGill University pointed out several particularly glaring flaws “rendering [Albain et al.'s] adjustments inadequate and their conclusions therefore unsupported.” First, they noted that as long ago as 1998, University of Michigan professor of Health Behavior & Health Education Arline Geronimus had shown that using “zip code-level socioeconomic status proxies ... for individual-level socioeconomic status” was inappropriate and misleading (essentially conflating group statistics with individual attributes). Second, the article Albain et al. cite as a source for using such census data actually “proposes that aggregated statistics be used for monitoring disease trends and not that they be used for individual-level control in racial disparity studies.” And third, even by Albain et al.'s own account, “The socioeconomic status data were missing for between 27% and 79% of subjects depending on the clinical trial.” Another letter to the editors noted that “Albain et al. provide no information about how they measured the central variable: race. This omission makes it impossible to disentangle the many behavioral, environmental, or genetic influences on cancer mortality that may be associated with race.”

Albain et al.'s flawed approach to controlling for “all other things” was essential to creating the space for genetics to enter into the characterization of racial difference. As Albain told Time,“Something big is going on among people who are getting equal care,” and that something, the authors concluded, “must be some unknown biological or genetic factor that differs by race.” The “unknown” is central to the dynamic of geneticizing racial difference. The logic here is clear, and clearly flawed. First, observe a biomedical racial difference (response to a drug or experience of a disease). Second, “control” for non-genetic factors (conveniently reducing these to income and education or some even more flawed identification with census data). Third, attribute any residual racial difference to genetics (even though you have no specific genes identified). Voila! A biological basis for race.

This approach was echoed in some responses to the JNCI article. For example, Dr. Lisa A. Newman, Director of the University of Michigan Breast Care Center, said, “There seems to be something associated with racial and ethnic identity that seems to confer a worse survival rate for African Americans. I think it's likely to be hereditary and genetic factors.” Yet, as Harvard Professor of Public Health David Williams noted in commenting on the Albain et al. study, “The biology is a fall-back black box that many researchers use when they find racial differences .... It is knee-jerk reaction. It is not based on science, but on a deeply held, cultural belief about race that the medical field has a hard time giving up.”

Albain, however, claimed that race was merely a surrogate for unknown genes: “When we find out what the [genetic] ‘it’ is,” she asserted, “we will be able to test everyone for ‘it’ and we will find some Caucasians who have it and some blacks who don't and we won't be talking about black and white anymore.”Albain here adopted the familiar trope of race as merely an interim measure, to be used as a proxy for genetics in the “meantime” until we reach the promised land of genomic medicine where race will then “wither away.” In this approach, however, rather than questioning their use of socioeconomic controls, the authors use race as a residual category to capture and geneticize all ““unknown” causes of racial difference. As epidemiologist, Jay Kaufman noted in criticizing the JNCI study, “If you are trying to make the argument that [different health outcomes] must be genetic by exhausting other possibilities and saying what is left over must be genes, well, that's never going to work. There are a million things that affect people's lives. If you think it's genes, then measure genes.”

Albain et al.'s approach is all too common. For example, in their study of genetic research into Type 2 Diabetes, Paradies, Montoya, and Fullerton were particularly concerned by “the offhand manner in which a number of these studies dismiss the relevance of sociocultural variables by failing to measure but nonetheless rejecting lifestyle factors, (e.g. diet and physical activity), as well as environmental and sociocultural characteristics as possible influences on study findings.” Given the complexity of interactions among human biology, behavior, history, society, and the environment, there will always be some causes of biomedical differences correlating with race that remain “unknown” and susceptible to being geneticized. As long as biomedical researchers give short shrift to socioculutral variables, there will continue to be a place for a flawed genetic concept of race long after the promised land of individualized pharmacogenomic medicine is reached.

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