Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-First Century

Chapter 8 focuses on the history of BiDil, the first race-specific drug used to treat heart disease.

Jay Cohn, in researching heart disease in the 1970s, made the enormous discovery of ACE-inhibitors in the treatment of heart disease. After this discovery, Cohn wanted to continue his research to examine other drug combinations that might be even more effective. He thus turned to working with a biotech firm, MedCo, to patent some of the drugs he had been testing. Though the patent was secured, the FDA failed to approve these drugs. Intellectual rights then reverted back to Cohn, since MedCo no longer had any interest in the drug. Cohn held the patent; he just needed to find another way to secure FDA approval so that he could market the drugs.

He and his colleague, Peter Carson, went back to the data that they had collected in their research years ago and realized that they might be able to secure FDA approval for what they called BiDil if they presented these drugs as race-specific. Patent-approval, then, was the incentive to find a new strategy for securing FDA approval and subsequent sales. Their new biotech firm, NitroMed, was disincentivized from showing that BiDil would be panoramically beneficial; all hinged on proving its race—and, specifically, Black—efficacy.

Thus, the African American Heart Failure Trial began in 2001, enrolling only self-identified African Americans, with no comparison group. BiDil was shown to work exceptionally well—so well that the trial was ended early so that all participants could receive the drug. The FDA hearing revolved not around the efficacy of BiDil but, instead, around whether it should be labeled as a drug specifically for Black people. Many Black physicians and activists argued that marketing BiDil would help the FDA “make amends” for its racist practices in the past, demonstrating that it was no longer interested in exploiting but, instead, caring for Black people.

The advisory committee to the FDA ultimately approved the drug, despite no scientific proof of the race-based claim of its efficacy. While it was true that the drug worked well for self-identified African Americans, there was no proof that it did not work even better for other groups. Thus, NitroMed sought to make profits not off a drug that was developed to treat heart failure in Black people but, instead, off a drug that was designed to treat heart failure in everyone—yet was now specifically targeting Black people via unproven statements about biological racial difference.

Claiming biological race differences is increasingly the means through which pharmaceutical companies obtain patents. Race was not part of any patent application between 1976 and 1997. Yet 65 patents included race in their application from 2001 through 2005. All the research done to market BiDil as a drug for African Americans stemmed from the myth of biological race; the refusal to address the environmental and cultural inequalities that create disease; and the pharmaceutical industry’s sole purpose of making money, which involves finding new markets.

Personalized genomics remain the holy grail of genomics. BiDil was marketed to Black people without any evidence that it was particularly effective for people of African descent; again, that category alone is a huge category of people that involves the most genetic diversity of any continent. But personalized genomics, or individually personalized medicine, will likely only be available to the most privileged, widening disparities in health care.

Direct-to-consumer genotyping has already taken off. Yet this kind of testing assumes that genes are both static and omnipotent. It elides the reality that genes must be activated or inactivated, always in relation to internal corporeal and external social, cultural, and environmental landscapes.

The narrative of one gene for one condition, as well as the ease of direct-to-consumer genotyping, has perpetuated the myth that genes exist and operate in a vacuum. The availability of genetic testing is viewed by some as enabling people to exercise enormous power over their biological lives, enabling decisions and choices that otherwise would not be available. Genetic testing for certain diseases can also enable people to create communities with others with the same health issues.

But race is central to approaches to genomics, such that genetic testing usually reinforces the biologization of race. For example, sickle cell disease has been represented as an African disease, often by African Americans themselves, as a sign of pan-global African identity. Yet sickle cell is not specifically African but a disease that is specific to places prone to malaria. Populations in Greece are more likely to have sickle cell disease than many African populations. Similarly, the mutations of BRCA1 and BRCA2 genes that can cause breast and ovarian cancer have been represented as grounded in Ashkenazi Jewish ancestry, but these mutations are not exclusive to this community, either.

With fetal genetic information widely available, many pregnant women are pressured to test for various genetic diseases, with the assumption that if these diseases are present, abortion will be pursued. There are technologies, too, that allow parents to determine much of the genetics of their children with in vitro fertilization (IVF), such as preimplantation genetic diagnosis, which goes well beyond prenatal testing. In the subtle pressures that are put on women who find that their fetus has a genetic disorder, Roberts is worried that reprogenetics may come to be seen as an obligation rather than a choice.

Genetic testing theoretically makes decisions and choices available, but what is presented as “choice” is often coercion. While people are not required to manage their health genetically, pressure is increasing on this front, shifting focus away from public health and governmental responsibility toward individual choice and management. As screening for disabilities is now seen as almost mandatory, the choice to have a disabled child may be met with condemnation, and support for the disabled may subsequently decrease. Or, it may be only the wealthiest who can afford to have a disabled child, with disability becoming a mark of privilege, while poorer women feel obligated to abort a fetus with a genetic abnormality.

These technologies are likely to intensify social inequalities by way of intensifying the work that the political category of race does.

After pornography websites, ancestry websites are the most popular on the internet. Many ancestry websites link a person’s ancestry to racial categories by defining them continentally (for example, African, European, Asian). Breaking ancestry down into percentages, though, also corroborates many of the threads of the biological race myth: that races are “pure”; that race is biological; and that each race is fundamentally unique and thus fundamentally different from every other race, with these differences never overlapping with other groups.

Allelic frequencies of certain genes can be used to determine geographical origin. These are then divided into continents that generally map onto preexisting ideas of race. Using the “flawed racial science” of population genomics (228), companies like AncestryDNA ascribe continental geographies.

Many scientists claim that ancestry services will help to promote racial justice, arguing that these services are playing a political role in the deconstruction of the category of race. Yet for the last several hundred years, people have been keenly aware of racial “mixing.” Laws were put in place to defend enslavers so that the children they fathered through the rape of enslaved women, for example, would not be able to make claims on their property or claim any familial connection.

However, despite its flaws, ancestry information is particularly important to many African Americans, who usually cannot trace their ancestry in conventional, archival ways. The first census that included Black people as citizens and not property was not until 1870. Information about enslaved people is very difficult to find, and it is almost impossible to trace ancestry back to Africa through archival resources. Ancestry sites are thus invaluable in this context. Ancestral information that links someone to a particular geographical group in Africa is obtained through mitochondrial DNA passed from mother to daughter and paternal and Y-chromosome DNA passed from father to son. Nonetheless, these only provide a tiny portion of one’s ancestral heritage.

Genetic definitions of ancestry are also problematic and contested within many communities. While some see Jewish identity as linked to genetics, there are various ways of thinking about this identity, with it traditionally being seen as matrilineal. In addition, many insist that Judaism is a religious identity first and foremost, trumping any genetic ties.

Indigenous Americans often contest genetic testing as a means of ascribing tribal identity. In the case of the Cherokee, the 1907 Dawes Roll established membership within the tribe, and Indigenous identity for federal purposes is generally traced to this roll; however, many former enslaved people of the Cherokee were not included on this list, even though they were part of the community. Genetic testing can provide people with no cultural affiliation a way into a nation. At the same time, it can also discount those who do have a cultural identity with a nation if they do not test as a genetic member.

Roberts concludes by stressing that identity is not the same as genetics, but that genetics partly determines identity. Roberts’s father had Welsh and German ancestors, but she has no interest in learning about her paternal line, even though her relation with her father was wonderful. Instead, she is interested in her mother’s African ancestry and “chose” this heritage. She insists that African Americans do not need to determine their ancestry to “claim that rich heritage” (255).