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Today it is almost impossible to pick up a newspaper or open a Web browser without finding an article that links a specific gene to a certain medical condition. In fact, a simple Google search of “gene linked” in November last year pulled up hits with genes linked to depression risk, restless leg syndrome, autism, breast cancer, childhood asthma, and type 1 diabetes in children. This is only on the first page of results from a total of 30,600,000 hits.
Increasingly, genes are being linked in the mainstream press, on the Web and also in prestigious medical journals not only to medical conditions but also to behavioral conditions such as narcissism, aggressiveness, and in some instances to voting behavior. Linking disease to specific genes is becoming progressively more common among the American public, too. The increasing perception is that an individual’s genes are the main cause of disease.
The “geneticizing” of disease is used most appropriately in those instances where we know that genes or gene variants alone can cause disease—such as Tay-Sachs disease, which is prevalent among the descendants of Eastern European Jews but not just this one ethnic group, or sickle cell anemia, which is common among Africans and African Americans but also in other ethnic groups that have faced the scourge of malaria over countless generations. Yet that is a real stretch in other instances when genes are linked to health conditions that become labeled as race specific, since this has the potential to distort the discussion on racial health disparities.
The implication in the press is that race is the determining factor in these and other possibly “race-based” diseases. Health professionals and the public must be wary of oversimplifying the idea that “x” gene equals “y” medical condition since millions of genetic variations may exist and identifying them all, and how genes interact with one another, has yet to be determined.
Indeed, researchers within the medical industry are wary of the oversimplification of geneticizing disease. Consider the growing concern among a consortium of scientists that genes are operating in a much more complex way than previously believed. Findings from the National Human Genome Research Institute, for example, suggest that it may be inaccurate to say that a gene can be linked to a single function like a predisposition to heart disease. This is critical information since the portrayal of genetic research and disease within the mass media often presents this information as mostly based on simple genetic predispositions.
If one examines the research on genes, race, and disease more closely, most research points only to a correlation of genes to disease, which is significantly different from a gene-based disease. Genes may predispose a person to certain health ailments, but health conditions are a combination of environment, lifestyle impositions, personal decisions, and access to affordable, quality health care. As geneticist Francis Collins observes, “associations often made between race and disease only occasionally have anything to do with DNA [and] most diseases are not single-locus genetic diseases and often are quite complex, involving many genetic loci as well as environmental factors.”
In short, it has been well documented that disease is a combination of nature and nurture. Health care policymakers must ensure that a correlation between a gene pattern and a medical condition does not become a proxy for the causation of that medical condition as some in the medical and pharmaceutical industries move toward geneticizing and racializing disease.
Perhaps the issue of most concern in this shift to geneticize disease is the inclusion of race into the research and development of medications in an attempt to combat health disparities. The inclusion of race into medical research is not novel, nor is the controversy surrounding it. In fact, opposing sides of the debate use the same argument—those in favor of eliminating racial categories and those in favor of using racial categories in medical research argue that such a move is problematic. Yet both sides of the debate express legitimate concerns on whether to include race in medical research.
The problem with including race in gene-based medical research is that recent scientific developments undermine the notion that race as a biological fact is still in question. While a lively debate about the biological underpinnings of race ensues under projects such as the HapMap project, a partnership of scientists and funding agencies from around the world to help researchers find genes associated with human disease that respond to pharmaceuticals, elsewhere world renowned geneticists such as Craig Venter and Francis Collins declare that race is not biologic. Craig Venter, who along with Collins helped map the human genome, states that “skin colour as a surrogate for race is a social concept not a scientific one.”
Still, some scientists rely on biological theories that oversimplify genetic variation between groups of people and con-
fuse this with socially defined races. For example, if you ask three different scientists to define race, you will most likely get three different answers.
This misconception about race has taken hold due to the tendency to racially categorize people based upon physical appearance, in most instances skin color and hair-type (the “I know it when I see it,” or phenotypical, reasoning). To date, however, the variations known as races are best explained by genetic drift, or the subtle changes within culturally breeding subpopulations over geologic time, and gene flow, or asymmetrical exchanges that are the byproducts of conquest between human subpopulations. Due to genetic drift and gene flow the existence of races is today a “social reality,” one which public policies, discussed later in this paper, reinforce.
This social reality is scientifically misleading, yet these socially constructed racial categories can be used to measure health disparities between different racial groups to determine the health status of different populations. It is well documented, for example, that people of color suffer from health disparities such as shorter life spans, higher infant mortality rates, and higher prevalence rates of many chronic conditions compared with their white counterparts. But using race to measure health disparities is very different from using unproven genetic differences to account for these same health disparities.
Problems arise when race as a social reality and race as a scientific “fact” are conflated in medical research. These efforts to geneticize or racialize disease have several dangerous implications:
- They may skew research by placing individuals on a short list of socially constructed, government-defined racial categories, thereby increasing the risk of perpetuating health disparities.
- They may compromise the health of people of color by eliminating from medical consideration the social determinants of health problems.
- They may contribute to the reemergence of scientific racism through an emphasis on linking genes to disease and race.
The dangers implicit in all three of these efforts to racialize disease require health professionals to come to grips with the reasons for health disparities due to race as a social reality and the misconceptions about health disparities due to race as a scientific myth.
This paper will briefly detail some of the health disparities experienced by people of color in the United States before turning to the emergence of race-based medicine and the threat it poses to effective health care. The paper will then examine the evolution of racial categories in the United States, and how current research finds that race is not genetically real. The paper will detail how known social determinants, such as residential segregation and other inequities, have continued to marginalize the status of people of color in the health care system and perpetuate health disparities. In
closing, the paper will address the dangerous implications associated with an overemphasis on the role of race and genes on health disparities.
Ultimately, the goal of this paper is to educate health care policymakers, advocates, and the public on how some research in genetics and biomedicine is accompanied by risks that could further undermine the health of people of color, reify race, and shift resources away from improving social determinants that contribute to health disparities. With our medical industry increasingly captivated by genetic links to disease, the health of all people, and particularly people of color who continue to suffer the most from health disparities, is at risk.
- Read the full report (pdf)