Mixed Race Studies

Race: A Starting Place

Virtual Mentor: American Medical Association Journal of Ethics
Volume 16, Number 6 (June 2014)
pages 472-478

Brooke A. Cunningham, MD, PhD

Health status, access to and quality of care, and numerous social factors associated with health vary across racial groups. Many applaud the collection and use of race data to identify and monitor progress in addressing health disparities. The National Institutes of Health (NIH) requires and the Food and Drug Administration (FDA) recommends the collection of race data in clinical research; the 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act provided financial incentives for health systems to collect race information through the Medicare and Medicaid Electronic Health Record Incentive Program (i.e., “meaningful use” of electronic health records); and the 2010 Patient Protection and Affordable Care Act (ACA) mandated that the Department of Health and Human Services establish standards for race and ethnicity data collection. Yet, in the face of increasing amounts of “race data,” we have created few opportunities for discussing “what race measures.” Some journals require authors to explain how race is conceptualized and collected in their studies, but the requirement is not standardized and rarely met. Thus, race and racial data are frequently interpreted in conflicting ways. This article seeks to provide an overview of race as a foundation for an improved understanding of the relationship between race and health.

Many challenges await those who wish to consider the role of race in health outcomes critically. Careful consideration of race requires identifying and setting aside much tacit knowledge about race—those ideas that come easily, are taken for granted, and simply seem right. Although “race…appears obvious, intuitive, and in need of no special knowledge to discuss or analyze…[u]sing race in biomedical contexts requires great care and expertise”. Such an approach is difficult because from childhood we learn the ways that racial groups are supposed to differ from one another. Frequently the lesson has been that differences between the races are intrinsic or inherited, and those beliefs have justified discrimination against members of racial minority groups. Finally, it seems that, to many, newer understandings of race that have emerged from the social sciences seem less scientific, less reliable, and more political than the biological or genetic explanations that they seek to unseat…

…Racial categories vary across the world. Thus, identical twins separated and raised in different countries could end up identifying their race differently. Similarly, were we able to send a person back through time, his or her race might change. Social scientists point to this variation in racial categories across time and space to argue that race is a social construct. Further support for the fluidity of race also comes from recent studies that show that some people report membership in different races at different times in their lives. The race that one selects often depends upon one’s current social position…

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Will Personalized Medicine Challenge or Reify Categories of Race and Ethnicity?

Virtual Mentor: American Medical Association Journal of Ethics
Volume 14, Number 8 (August 2012)
pages 657-663

Ramya Rajagopalan, Ph.D., Postdoctoral Research Fellow
Department of Sociology
University of Wisconsin, Madison

Joan H. Fujimura, Ph.D., Professor of Sociology; Professor of Science and Technology Studies
Robert F. and Jean E. Holtz Center
University of Wisconsin, Madison

In the last 5 years, medical geneticists have been conducting studies to examine possible links between DNA and disease on an unprecedented scale, using newly developed DNA genotyping and sequencing technologies to quickly search the genome. These techniques have also allowed researchers interested in human genetic variation to begin to catalogue the range of genetic similarities and differences that exist across individuals from around the world, through initiatives such as the International Haplotype Mapping Project. These studies of human genetic variation promise to produce new kinds of information about our DNA, but they have also raised ethical questions.

Early results from genome-wide studies of possible links between DNA and various medical conditions are being used by various actors to develop what they call “personalized medicine,” the effort to tailor and individualize diagnoses and treatments for use during routine medical care. The promises of personalized medicine are built on the idea that each individual’s genome is unique. They are also built on the idea that genetic variation among individuals will help explain differential susceptibilities to disease and why some patients respond better to some treatments than others. To this end, researchers have focused on characterizing genetic differences between individuals and groups…

…We note two ethical dilemmas posed by the claims made by these and other similar studies that attempt to link genetics, ancestry, and disease, particularly when ancestries are described in terms of continent of origin, for example, European, African, and Asian. Such labels are based on socioculturally defined U.S. categories of race and ethnicity, such as white, black, and Asian. The first dilemma arises because these studies are based on a relatively small subset of individuals who identify within any of these continental ancestry or race groupings. Thus, any extension of study findings to others who identify within these broad groupings would be fraught with problems of accuracy and precision. Indeed, much genetic evidence suggests that those who identify with a particular U.S. race or ethnicity census category are quite genetically heterogeneous. Thus, there is no neat correspondence between genetic variation and one’s assumed race or ethnicity. Indeed, no single pattern of genetic variation is diagnostic of affiliation with any particular race or ethnicity.

Second, and consequently, many worry that the new technologies being used to develop personalized medicine may also become technologies that are used to define “genetic signatures” for, or “genetic stereotyping” of, different racial or ethnic groups. This aspect of personalized medicine, if developed and nurtured into broader clinical use, will popularize the idea that it is possible to infer underlying genetic makeup from an observer-defined or self-reported race or ethnicity, when even proponents of using race in genetics research argue that this is a logical fallacy. This possibility recalls some of the past attempts to link race and biology, e.g., the eugenics movements of the early twentieth century…

…Nor is race new to American medical genetics. Many scholars have analyzed the American eugenics movements of the early twentieth century and the more ethically aware field of medical genetics that they eventually gave rise to in the mid-twentieth century. Prior to the start of the Human Genome Project, medical genetics focused primarily on relatively rare, familially inherited diseases. Certain generalizations about the relationships between race and genetics, now part of popular understanding and medical training programs, grew out of these studies. For example, medical school and college biology curricula continue to propagate the idea that some single-gene, highly heritable diseases, like Tay-Sachs disease or sickle-cell anemia, are prevalent in only certain groups—as in Jewish and African American groups, respectively—than other groups. What is often not acknowledged is that Tay-Sachs has also been observed at high prevalence in non-Jewish groups in Quebec, Canada and that sickle-cell and other hemoglobin disorders are common in many groups around the world. The misconception that a particular disease like sickle-cell is specific to African Americans may lead to patients being misdiagnosed or diagnosed too late in the progression of disease simply because they are not of the ethnic group “marked” by the disease…

…Personalized medicine is at a crossroads. It may be used to sustain old beliefs about racial differences, yoking them to supposed differences in health and susceptibilities to illness. This in turn may fuel the view that our genetics establishes an innate, definitive roadmap of our future health. However, recent studies of hundreds of common complex diseases suggest that genetics has only a small part to do with our susceptibilities to these diseases.

An alternative route for personalized medicine is for its practitioners to take stock of the various environmental onslaughts that individuals are subjected to and tailor medical diagnoses and treatments by considering each patient’s unique complement of environmental and biological factors that may contribute to health or disease. If personalized medicine is to bear out its name and become truly “personalized,” then a focus on racial differences at the level of the genome constitutes a step off the path with many ramifications, including the possibility of racial and ethnic stereotyping and discrimination during routine medical care that could lead to misdiagnoses and ineffective treatment regimens. Efforts to achieve personalized medicine in clinical settings would do better to focus on patterns in genomes and how such patterns may be associated with disease, rather than trying to find genetic correlates for existing racial and ethnic categories…

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Personalizing Medicine: Beyond Race

Virtual Mentor: American Medical Association Journal of Ethics
Volume 14, Number 8 (August 2012)
pages 628-634

Timothy Chang, MD-PhD Student
University of Wisconsin, Madison

McNearney TA, Hunnicutt SE, Fischbach M, et al. Perceived functioning has ethnic-specific associations in systemic sclerosis: another dimension of personalized medicine. J Rheumatol. 2009;36(12):2724-2732.

Considering the explosion in medical technology, from genomics and genetic biomarker testing to computerized imaging and detailed electronic medical records, personalized medicine may one day be common practice in our medical system. In “Perceived Functioning Has Ethnic-specific Associations in Systemic Sclerosis: Another Dimension of Personalized Medicine,” Terry McNearney et al. [1] found that “clinical, psychosocial, and immunogenetic variables had ethnic-specific associations with perceived functioning” in patients being treated for systemic sclerosis (SSc). The relationship of ethnicity both to the clinical, psychosocial, and immunogenetic variables and to perceived functioning raises ethical questions, especially if clinicians “personalize” treatment based on these findings.

Systemic sclerosis (SSc) is an autoimmune disease characterized by fibrosis of the skin and internal organs, commonly preceded by autoantibody production and vasculopathy [3]. Although management of complications has improved, the median survival after diagnosis is 11 years [4]. Currently, SSc is incurable, and health-related quality-of-life (QOL) measures are important indicators of disease outcome [5-9].

Conclusions from Study
 
In this cross-sectional study, Caucasian, Hispanic, and African American patients with recent-onset SSc were assessed for perceived physical and mental functioning using validated surveys and a self-reported physical disability instrument. Perceived functioning scores were then tested for association with demographic, socioeconomic, clinical, immunogenetic, psychological, and behavioral variables. Among Caucasians, immunogenetics, fatigue severity, helplessness, and social support were associated with perceived functioning, while among African Americans and Hispanics, immunogenetics, autoantibodies, illness behavior, and helplessness were associated with perceived functioning. This study is the first to identify associations between perceived SSc functioning and ethnically specific genetic markers and autoantibodies…

…Limitations…

..Using race and ethnicity to alert clinicians to greater likelihoods of certain health conditions became more controversial with the development of what was considered a race-specific drug. In 2005, the FDA approved isosorbide dinitrate/hydralazine (BiDil), a combination antihypertensive and vasodilator drug, specifically for African Americans. Major controversy ensued over whether a drug should be approved for use in a specific race since most drugs have long been tested on white subjects but not approved only for whites. Moreover, approval of BiDil for African Americans was not granted for biological or genetic reasons—the proposed differences in mechanism of nitric oxide uptake in African Americans were never tested…

…Is race a biological concept? Until now, I have been talking as though race has biological meaning. There is clear evidence, however, that race is not a genetic concept , and some would argue that it has no biologic basis. Only 5-10 percent of genetic diversity is explained by one’s membership in a given “race”. In actuality there is as much or more genetic diversity within a racial group as there is between racial groups.

Race is more a sociopolitical concept than a biologic one. The concepts of race and ethnicity were not developed for scientific use but are popular concepts, which, in the United States, were made official for census taking by the Office of Management and Budget Race and Ethnic Standards.

Membership in race is defined differently across research studies, time, and geography. Most studies do not report how race information is obtained, e.g., self-identified or clinician determined, let alone standardize the process. The definition of race is also time- and geography-dependent. How “black” and “white,” for example, are defined in the United States has changed from the 1800s to the 1900s. Because race is identified by one’s parents at birth and can be assigned by the medical examiner at death, a person may be born “black” but die “white”. Geographically, a light-skinned person may be considered white in the Bahamas but black in the United States. Inconsistencies in the definitions of race make its usage problematic at best…

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“Vulnerable” Populations—Medicine, Race, and Presumptions of Identity
 
Virtual Mentor: American Medical Association Journal of Ethics
Volume 13, Number 2 (February 2011)
pages 124-127

Karla F. C. Holloway, Ph.D., MLS, James B. Duke Professor of English and Professor of Law
Duke University, Durham, North Carolina

At the beginning of the twentieth century, renowned sociologist William E. B. Du Bois warned that “the problem of the twentieth century” would be “the problem of the color line”. I suspect that Du Bois would not have imagined that this color line would be as enigmatic and troubling in the twenty-first century. But the fact is that today’s issues of race and identity reveal an arguably more complicated terrain. To illustrate this point, consider the background of the following patients.

• Ms. A’s father is Nigerian and her mother is British.
• Ms. B’s mother and father are both from Jamaica. She has lived in the United States since birth.
• Ms. C’s parents were both born in the United States. Her father is from Detroit’s inner-city and her mother is white.
• Ms. D’s parents were born in Ghana and South Africa.
• Ms. E, who has curly blond hair, fair skin and green eyes, has checked the box for “black or African-American” on her medical history form. She was adopted at birth.

In fact, each of these patients has checked that same box—“black or African American”—on their patient history forms. What does this tell us?…

…The black folk whose souls Du Bois worried over in 1903 had a peculiar history of visibility and vulnerability. It is a history replete with narratives about medical care of lesser quality and exploitation sutured to institutionalized racial biases and stereotypes. When contemporary medicine takes up the category of race as a biologic rather than a social indicator, it ignores the complexity that is resident in “African American communities.” A community-based medicine or research ethic cannot escape this history of identity and vulnerability and the significant variables that accompany the experience of race. This is not an occasion when new and good intentions erase the impact of past bad acts. Language has a habit of entanglement…

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