Mixed Race Studies

Discrimination Down to a Science

Hyphen Magazine
Issue 26, Spring 2013 (The South)

Dharushana Muthulingam, Health Editor and a resident physician at Kaiser Permanente in Oakland

How genetic data shapes science and medicine and what is being done to change it.

In the 1997 science fiction movie Gattaca, set in a future of genetically engineered humans, Vincent Freeman — the unfortunate product of “natural conception” — declared: “I belonged to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science.” It is a touching picture of dystopia, where we have moved beyond our current social myopias, only to find new, more elaborate ones.

In 1997, the race to map the human genome — the entire hereditary information of humans — was in full force. It held the promise of better medicine, better technology and a better idea of where we come from. But a long history of discrimination by social status and skin color still had an unwitting effect in shaping science.

Genetics has only recently had concrete applications in medicine and everyday life. By the mid-2000s, the price of genetic testing decreased steeply enough to make it usable outside of research. Now, we can identify which specific breast cancer variant will respond to a certain treatment or predict if an HIV medication will cause a bad reaction.

The potential for Personalized Medicine was born on these few successes, with slick promises of customized treatment for what ails you. This has also improved the well-being of a handful of stockholders, with the nascent industry estimated to be worth $232 billion and growing 11 percent annually…

…To its credit, the National Institute of Health has repeatedly tried to tie funding to increasing diversity in research subjects since the 1970s, with mixed results. This long shadow of history and the general societal conversation of race still shape the culture of how scientists approach race and which people are willing to sign up as subjects.

This caution may have been the prudent thing, but it may have also slowed down investigations that are biologically valid and in fact, facilitate a more just and accessible science. The last 10 years have seen an astonishing rise in the health research of minority populations and disparities due to social class, and the genetic database is only just starting to catch up.

Another barrier is having a misleading taxonomy: the trouble with getting your racial categories right. While there is some relation between your geographical lineage and your collection of genes, the traditional American racial categories like “white” and “Hispanic” are historical artifacts that do not map rigorously to anything in the natural world, even as they shape our society.

This was suspected by famed evolutionary biologist Richard Lewontin in 1972 and confirmed in a 2004 analysis that found that there is more genetic variation within each of those categories than there are differences between any two categories. Of course, people mix across categories, which complicates genetic profiles…

…For all these important reasons for having a diverse genetic database — accuracy in research, finding unique mutations and, yes, a more marketable consumer genetic industry — there is also the sense that race is only one tiny lens among many to view the data. Since the Human Genome project was completed, they found that over 99.5 percent of genes are identical across human kind.

“Yet, almost as soon as researchers announced this result, several research projects began to focus on mapping the less than one percent of human genetic variation onto social categories of race,” Osagie Obasogie, a professor of law at UC Hastings, noted in GeneWatch Magazine in 2009.

Despite the fact that social categories of race do not match genetic categories, and despite the existence of far more similarity than difference among these social categories, a lot of effort has gone into trying to dig up what minuscule matching does exist.

Not only are the old categories of race too rough and misleading for modern biological work, there is a risk for what sociologist Troy Duster calls the “reification of race” — a circular process of using a popular understanding of race (shaped by hundreds of years of custom, biases and so on) to shape the scientific questions and research funding, which then gives an aura of legitimacy to that pile of unexamined biases…

Read the entire article here.