Commentary by Felice Aull, Ph.D., M.A.; Associate Professor of Physiology and Neuroscience, New York University School of Medicine; Editor in Chief, Literature, Arts, and Medicine Database
I have long been interested in the metaphor of borderlands as a tool for exploring areas of ambiguity in medicine and in society. Courses that I teach (to medical students) consider ambiguous boundaries between student and professional, patient and physician, personal life and professional life, disease and health, and the cultural confusion that derives from migration and dislocation. I address those issues using theory from the social sciences and humanities in addition to fiction, memoir, poetry, and art. One of the topics that we consider is the ambiguity inherent in concepts of race. This has become a topic of recent interest (and controversy) because race, medical research and practice, and health policy are being linked with the genomics revolution. And since all of these endeavors take place in a sociopolitical context, recent events and discussions in the national political scene cannot help but play a role in our thinking about these topics. With this as background, I offer some thoughts triggered by a recent confluence of events.
1. The presumptive nomination of Barack Obama as the Democratic Party’s choice for president.
2. The March, 2008, announcement that the National Institutes of Health established the Intramural Center for Genomics and Health Disparities, whose priority is to "understand how we can use the tools of genomics to address some of the issues we see with health disparities."
3. Publication in the journal, Literature and Medicine, of "How Culture and Science Make Race ‘Genetic’: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous," by Celeste Condit. (26/1, Spring 2007 pp.240-268).
What is race?
Because Barack Obama was chosen to be the presidential candidate of a major political party, much has been made of the advances this country has made in racial tolerance and acceptance. Yet the fact that so much attention is being given to the racial component of the upcoming election emphasizes that race and color are still important in the national narrative. Obama personifies the contradictions and fallacies of the way we traditionally think about race. Born in Hawaii to a "white" American woman and a "black" man from the African country of Kenya, Obama is identified by virtually everyone as "African American" and black, although he is culturally atypical in that he is not descended from US slaves. He himself for the most part accepts that designation but he has consistently sought to move beyond race and has even been described as "post-racial." In this country Obama is virtually forced to identify as African American because he is so identified by almost anyone who notices the color of his skin. Mr. Obama could not identify himself publicly as a white American or as "Caucasian," even though his ancestry is as much white as it is black. He could not "pass" as white, simply because we tend to equate skin color and other physical characteristics with something that many call "race."
While race has recently come to the forefront of national discussion in the political arena, it had already surfaced as a topic of interest among contemporary sociologists, anthropologists, evolutionary biologists, and others who questioned how biomedical researchers were characterizing populations and questioned conclusions that related biologic characteristics to "race." (See for example references 1, 2, 3 below). Already in 1999, the Institute of Medicine stated that race was a "construct of human variability based on perceived differences in biology, physical appearance, and behavior" but race was not a "biological reality." (The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved, p.38 as quoted in reference 1 below). Yet headlines are still being made by researchers who claim to identify genes that "explain" "racial" differences in response to drugs ("Genes Explain Race Disparity in Response to a Heart Drug," by Gina Kolata, New York Times, April 29, 2008).
There is much ongoing biomedical research that attempts to establish a genetic basis for biologic differences among populations, especially in the area of pharmacogenetics. Now the NIH is going to "continue efforts to develop genetic epidemiology models and population-genetics research projects that provide insights about the interrelationships of culture, lifestyle, genetics, genomics and health." The director of the new NIH center, Charles Rotimi, is described as leading "research on diseases affecting minority groups." While the word "race" is not used in describing the new institute’s mandate, it is of course a subtext. And while the goal of the research may be to address health disparities, and will take into consideration culture and lifestyle, subtle socioeconomic patterns of discrimination and lack of opportunity in education, employment, housing, etc. are apparently not included as factors that influence complex illnesses — yet they should be. For a recent relevant commentary on this, see Daniel Goldberg’s Medical Humanities blog, "On Income Inequality and Population Health" and also see the "stigma" issue of Social Science & Medicine, that Goldberg drew attention to a few days earlier.
In my teaching I used the recent penetrating article by Celeste Condit in Literature and Medicine (event #3 above) to consider concepts of race and race-based medicine. Condit lays out the background for the current interest in race-based medicine and then proceeds systematically to demonstrate that the complexity of human genetic variation can not be fit into discrete categories like race or what is more often now discussed as continent of origin and gene clusters. She marshals the evidence that "there are no discrete boundaries among groups; instead there are slowly changing [gene] flows" (p. 253). And here is why this essay appeared in a journal of literature and medicine: Condit asserts that language "is always predisposed toward discreteness and binarity" and that we cannot wrap our minds around "any single word or visual map that could capture the 3 million different patterns of difference [in the 3 million base pairs in the human genome that vary]" (250). In addition, Condit argues that the notion that "human genetic variation partitions people into ‘races' " is a two-step [probably unconscious] rhetorical strategy that claims (1) gene clustering coincides with continental boundaries and (2) continents coincide with five historically designated racial categories(254). She shows how verbal manipulation is involved in mapping genetic clusters with five continental groupings and then enumerates the many ways that racial designations fluctuate and do not consistently correspond with the five groupings or with genetic clusters.
I asked students to describe how they were being taught with regard to categorizing patients by race and ethnicity (variably, depending on individual instructors). We discussed the following: Isn’t it important to be able to design targeted drugs and treatments that are based on human genetic variation? Don’t we want to bring the genetic revolution to bear on health disparities among populations? Don’t physicians need to take race/ethnicity into account when they make diagnoses and recommend treatment?
Physicians may make erroneous assumptions about the ancestry of their patients, based on skin color. Even racial self-description is based on social and cultural factors that can have little to do with relevant genetic information- a problem that applies to research as well as to medical practice. For example, the recent paper (Reference 4) that made above-mentioned headlines in the New York Times used a sample repository based on self-identified "ethnicity" and classified its human subjects based on self-reported ethnicity (read "race"). So from a medical research and practice perspective, there are problems of interpretation. Many social scientists and biologists are concerned about these problematic practices because they fear that important socioeconomic factors influencing health will be obscured and the discredited view that race is a real biologic entity will reassert itself, with all of the baggage associated with such a view. Critics of race-based medicine do not dispute the need for targeted therapy and treatment but they urge individual genetic testing, and that researchers develop a "technical vocabulary . . . based on concepts of geographic distance from some arbitrarily chosen orientation" (Condit, p. 263).
Categorizing race/ethnicity for medical humanities
In medical humanities scholarship and teaching, culture, identity, and marginalization are topics of interest. Recognizing this, the editorial board of the online resource, the Literature, Arts, and Medicine Database (I am editor-in-chief) sought to identify authors or artists whose work reflected these topics from the perspective of a particular ethnicity/race. But this turned out to be a vexing proposition. Suppose we were to annotate one of Barack Obama’s books for the Database-should we categorize his ethnicity as part of our brief biographical information? If so, how? Such questions were debated by the Database editorial board at length a few years ago, and probably none of us are totally satisfied with our final decision. The decision was, for the time being, to categorize a limited group of authors who self-identify their ethnicity publicly and whose work reflects their interest in that ethnicity. And I admit that the categories we developed were Eurocentric — that is, whites are the (invisible) referent group against which all others are categorized and which assigns the categories. So, in the case of Obama, we would probably categorize him- as African American-because of ongoing racial discussions about him and his own discussion of race in his book, Dreams from My Father.
But now I give you an example of an author whose biographical information I struggled with several years ago, before we made the guidelines for ethnicity: literary critic, Anatole Broyard (1920-1990). At first I left his ethnicity blank, thinking that he was "Caucasian." Then, after reading Henry Louis Gates’s essay about Broyard in the New Yorker, I labeled him as African American -Gates wrote that Broyard came from a mixed-race Creole background; as an adult Broyard had not revealed that information to most people and was able to do so because he could "pass" as white. Yet I was uncomfortable, thinking that Broyard would probably not have wanted this information to be made public and, in addition, his ethnicity had nothing to do with the work I had annotated. After a while I removed the designation of African American and left his ethnicity blank again. Now we have the book by Broyard’s daughter, Bliss: One Drop: My Father’s Hidden Life — A Story of Race and Family Secrets (Little Brown, 2007), in which she traces back her father’s side of the family and finds in patterns of racial confusion and suppression an explanation for some of his behavior. She has "outed" her father for good (and herself??) and raised these issues for public discussion. Many of us like to see ourselves as "post-racial" and perhaps ethnicity should no longer be a marker for authors — but I don’t think we’re there yet. (I’m still leaving Anatole Broyard’s ethnicity blank.)
1. Sandra Soo-Jin Lee, Joanna Mountain, and Barbara Koenig. The Meaning of Race in the New Genomics: Implications for Health Disparities Research. Yale Journal of Health Policy, Law, and Ethics. Spring, 2001, pp. 33-75.
2. Alexandra Shield, et al. The Use of "Race" Variables in Genetic Studies of Complex Traits and the Goal of Reducing Health Disparities. American Psychologist, Volume 60, Number 1, January 2005, pp. 77-103.
3. Troy Duster. Race and Reification in Science. Science, Volume 307, February 18, 2005, pp. 1050-1051.
4. Stephen B. Liggett, et al. A GR K5 polymorphism that inhibits beta-adrenergic receptor signaling is protective in heart failure. Nature Medicine, 14/5, May 2008, pp. 510-517