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Mention “scientific racism” to the average American and he will conjure up gruesome images of Nazi research performed in concentration camps. Very few will think of the Tuskegee syphilis experiment.
Conducted between 1932 and 1972 on behalf of the U.S. Public Health Service, researchers studied the progression of untreated syphilis in poor, black men — men who thought they were receiving free health care from the U.S. government. Instead, they were allowed to die painful and preventable deaths, hundreds of them, in the name of medical progress.
Public policy has since changed to reflect our evolving morality and as a nation, we are more than willing to acknowledge our mistakes. (Witness films like “The Help” in which a feisty benevolent white exposes the gentle horrors of 1960s Mississippi.) These reminders, however, are as morally impotent as the parental admonition to “clean your plate; there are kids starving in Africa.” Instead of inspiring moral or ethical action, they remind us to count our blessings. Besides, we know we engaged in bad policy, but look how far we’ve come!
But exactly how far have we come? And do we really know from where we came?
A reading of Rebecca Skloot’s “The Immortal Life of Henrietta Lacks” brings up these questions as the author examines the life and legacy of a poor, black tobacco farmer whose cancer cells revolutionized medical research.
Henrietta’s cells were harvested for the purpose of research without her knowledge or consent and launched a multi-million dollar industry. However, her family has not seen a penny of that money. Because the Lacks family is too poor to afford health insurance, they have received little practical benefit from the medical advances made from her cells.
The ethical implications of Henrietta’s story are mind-boggling. They also transcend time and place. Next month, as part of the Ethics Center’s nine months-long Henrietta Lacks Series, Dr. Jamie Gates will examine the complexities of the South African HIV/AIDS crisis using the ethical lens of Skloot’s bestseller.
How does the story of a segregation-era African-American whose cells changed medical history and a post-apartheid pandemic inform each other? In short, they bear witness to the enduring legacy of an asymmetry of power and the confusion, anger and mistrust engendered by scientific racism.
While the story of Henrietta is only now getting attention thanks to Skloot’s book, most people know at least something about the AIDS pandemic in South Africa. And yet it is nearly an “invisible” crisis, as the 5.7 million afflicted remain largely an abstraction. More inconceivable is former South African President Thabo Mbeki’s controversial stance on AIDS.
Rejecting scientific consensus that HIV causes AIDS, Mbeki aligned himself with a group of dissident scientists known as AIDS denialists. The solution to the crisis was not expensive western medicine, but the alleviation of extreme poverty and poor health. Instead of rolling out antiretrovirals (ARVs) like neighboring countries, Mbeki and his Minister of Health (“Manto” Tshabalala-Msimang) encouraged South Africans to eat a diet of garlic, olive oil, African potato and beetroot.
Although post-apartheid health ministers have cited cost as a concern, Mbeki’s anti-ARV policy cannot be reduced to economic grounds. It cannot explain his restrictions on the use of donated nevirapine in 2000 or his blocking treatment grants from the Global Fund in 2002. Inadequate delivery infrastructure notwithstanding, Mbeki did finally implement a national ARV treatment program in 2004 but only under intense international pressure.
Harvard researchers calculate that Mbeki’s denial of ARVs to people with HIV caused 330,000 South Africans to die prematurely and 35,000 newborn babies to be infected with HIV between 2000 and 2005.
Such statistics make it tempting to vilify Mbeki, but even the harshest critics stop short of accusing him of malice towards people with AIDS. Instead, his policies must be seen through the larger historical context of scientific racism.
Medical science is not, contrary to western thought, objective or politically neutral. Historians and sociologists, including Dr. Steven Robins of the University of the Western Cape, have noted that this “fallacy is particularly evident in Africa where there has been a deep distrust of colonial science, medicine and western policies.”
Beginning with an 1899 outbreak of the bubonic plague (in which the South African government forcibly removed blacks from their homes in an effort to prevent the spread of an infectious disease), government officials have used science to justify a separation of the races. Since they believed it was scientific “fact” that blacks were dirty and inherently more disease-prone, separating them from whites was a matter of public health, a banner the government has waved up until the emergence of AIDS in 1982.
Initially regarded as a Black problem, apartheid officials responded by sponsoring an AIDS campaign predicated upon old prejudices and racial stereotypes of black hypersexuality.
It would be an oversimplification to claim that Mbeki’s AIDS policies were merely a deterministic response to racist public health policies; however, it is clear from a 2001 speech that his rejection of skyrocketing AIDS statistics were in part a rejection of the colonial and western definition of African-ness as “germ carriers and human beings of a lower order that cannot subject its passions to reason” who must “adopt strange opinions, to save a depraved and diseased people from perishing from self-inflicted disease.”
Racial otherness in “The Immortal Life of Henrietta Lacks” also carries the burden of disease for as the author notes, Tuskegee researchers “chose black subjects because they, like many whites at the time, believed black people were ‘a notoriously syphilis-soaked race.’” Add to that poverty and a lack of education and opportunities, segregation era blacks (in their very powerlessness) presented as the perfect research subjects. “Consent” could be bought with a free meal or a bus ride in to town. Never mind that they did not understand what they were consenting to.
Most importantly, they did not ask questions.
They were, as a general rule, indisposed towards resisting the authority of doctors and researchers: “Doctors knew best and most patients didn’t question that. Especially black patients in public wards…it was understood that black people didn’t question white people’s professional judgment.”
As unthinkable as the Tuskegee experiment is now, we tell ourselves that watching a patient die when a cure is a mere shot away is something that could never happen again.
And yet in the 1990s, the U.S. helped sponsor research trials in Africa in which short course AZT vaccines for the prevention of mother-to-child HIV transmission were tested against placebos. In other words, pregnant women with HIV received a placebo when a long course of AZT was known to be effective.
For bioethicists, this is yet another example of an impoverished nation’s exploitation at the hands of a developed nation-something that is mirrored in Skloot’s book, except the impoverished population are poor black Americans instead of Africans.
Against this backdrop of scientific racism, research exploitation and the not altogether altruistic motives of the biotech industry, is Mbeki’s mistrust of western aid and policy really all that unthinkable? For as Skloot’s book shows us, white charity, for all its benevolence, sometimes comes with a price. And that price for vulnerable populations is access.
Nothing can excuse or justify Mbeki’s inaction and mismanagement of the AIDS crisis in South Africa; however, if history is to judge him, it should at least take into account the contextualized complexities that make ‘denialism’ quite rational, that acknowledge the sins of the past that continue to haunt the present, that acknowledge the sins of the present (e.g., drug company trials in South Africa by U.S. research corporations interested in greater profits with fewer controls) and our own ongoing misperceptions of the “dark continent” that continue to dehumanize African peoples.
Kim Faulkner is a teaching intern at San Diego City Collegeand writes as a member of the San Diego Center for Ethics in Science and Technology.
Dr. Jamie Gates is professor of cultural anthropology and African studies and director of the Center for Justice and Reconciliation (CJR) at Point Loma Nazarene University. He lived in South Africa for more than 10 years, studies post-Apartheid race relations, and leads regular justice and reconciliation study abroad trips to South Africa.
The Reuben H. Fleet Science Center and the San Diego Center for Ethics in Science and Technology will be hosting a free public forum to discuss the HIV/AIDS crisis in South Africa. Come join the conversation on October 5th at 5:30 p.m. Registration information is available through the Ethics Center website.