Mixed Race Studies

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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