Life on the Edge of Medical Research
Civil Rights within the scope of medical research have undergone many shifts in its ethics and practices. The study of medicine has significantly evolved since its inception. Further, medicine has always been at the borders of popular ethics. For many years, because of religious doctrine or otherwise, performing surgery on another person was illegal. In lieu of living tissue for research, some researchers in the medical community obtained close-to-living tissue by grave-robbing freshly buried bodies (Porter, 54). Many today would be surprised by the Hippocratic Oath’s original intention. The oath was, in fact, engaged “to protect doctors, through a guild-like closed shop, no less than to safeguard patients” (Porter, 31). Throughout history, the dramatic shift from research ‘in the interest of medicine’ to research ‘in the interest of the patient’ is seen in Henrietta Lacks’ story – The Immortal Life of Henrietta Lacks by Rebecca Skloot – along with countless other instances, and is a representation of the dramatic progression of medicine & medical research ethics and its relation to Civil Rights debates throughout history.
The perception and function of doctors today is actually quite different than that of their earlier kinsmen (Porter 23). However, the near-exploitative, taboo nature of medical research – undercover grave-robbing in the name of science, for example – has usually been consistent. Alexis Carrel, a French surgeon at the Chicago Rockefeller Institute, was lauded by the medical community for his miraculous and living “immortal chicken heart” in 1912 (Skloot 333). Carrel, however, deceived the medical community – and managed to do so for many years – until his fraud was discovered. Carrel’s “discovery” opened many doors for him; his book Man, The Unknown permitted him to declare his Nazi eugenic ideals in a public forum. Carrel believed that the U.S. Constitution should be changed to say that “the feeble-minded and the man of genius should not be equal before the law” and that “the stupid, the unintelligent” do not have a right to obtain an education. In the end, however, Carrel died while on trial for assisting the Nazis and his un-miraculous chicken heart was “unceremoniously” thrown into the round file (Skloot 62). Carrel was not the only medical researcher who believed that minorities and the less fortunate were not true citizens under the U.S. Constitution. Minorities have been specifically targeted for laboratory research. A team of researchers review the ethics of research, and discuss their findings in their article Twenty-first Century Ethics of Medical Research Involving Human Subjects: Achievements and Challenges. The Tuskegee Study, funded by the United States Public Health Service (155), observed the natural progression of syphilis in African-American volunteers (well after penicillin was known to be an effective treatment). The subjects were not told about the nature of the study, but they were offered incentives for participating (Skloot 50). Further, an Illinois prison voluntarily infected its population with malaria, and institutionalized children who carried down syndrome were infected with hepatitis B under the coerced consent of the parents (Tzamaloukas 155). Henrietta Lacks, a black woman dying from cervical cancer, had a hope of survival through Johns Hopkins Hospital. Lacks, like many other minorities, was turned away from smaller hospitals because she was black, and her only hope was in the hands of the medical teams at Johns Hopkins. Lacks’ cancerous cervical cells were taken without her consent, and researchers hoped to grow cells to sell for profit and for research. Sadly, Lacks, like many other patients in her situation, died a slow and painful death, yet her cancer cells live on across the world today (Skloot). Johns Hopkins profited from the sale of Lacks’ “immortal” cells, and the larger ethical debate was that the family was not compensated nor informed of the cell culture’s existence (Skloot). There were many arguments for and against this ethical debate and they are still discussed today in many forums. The Lacks family could not afford basic health insurance, were not compensated, “even though [Henrietta Lacks’] cells have led to millions of dollars in profit.” Johns Hopkins argues that that “the family’s inability to afford health insurance is not the fault of JH” (Baker 340). In fact, the first recorded public human dissection circa 1315 in Bologna, Italy gave rise to new areas of profit on a larger scale in the medical community. Until then, anatomy had little to do with the standard medical education and, as a result of this new anatomical knowledge, the need for anatomy theatres spread like wildfire throughout Italy and by 1550 became a standard teaching implement (Porter 55). Overall, new ways to profit in medicine were seen in the expansion of existing research facilities and hospitals, as well as the erection of new research facilities (55).
The evolution of medical ethics in relation to civil rights is also present in the change from maternal to paternal obstetrics. Female midwives were frequently marginalized and replaced by a male-dominated medical society (Porter 117). “As it makes clear, Hippocratic medicine was a male monopoly, although physicians expected to cooperate with midwives and nurses” (31). Clearly, the widening divide created by patriarchal medicine has had its influence over women’s rights. Present debates such as stem cell research and abortion are in the hot seat and, perhaps with further contemplation, begs the question: If there was no shift from female midwifery to male accoucheurs, would there even be a stem cell or abortion debate today (119)? The male dictum in regards to the rights and wrongs of childbirth, childcare, and all-encompassing knowledge of the female reproductive system is curiously in the hands of a group of males rather than first-hand female expertise. The shift to male expertise in a “woman’s world,” along with other socio-cultural elements in the 1960s, brought to a head the great emergence of the feminist movement. The battle between the sexes progressed well into the 1970s and cases that involved women’s reproductive rights, such as the prominent abortion rights case of Roe v. Wade, emerged. Ultimately in Henrietta Lacks’ case, her doctors and their peer associates were all male, and further, they sought out Lacks’ tissue – the tissue of a poor, black female – without her consent and it was in the interest of medicine and not in the interest of Lacks’ well-being (Skloot).
The argument that many medical researchers held was that “the principle of the common good was used to justify some of the human experiments…” and two philosophies were used to support the experiments (Tzamaloukas 155). The first philosophy stated that “biological thinking” was the professional attitude that leads a researcher to perceive a human subject as nothing more than merely a “series of biologic events…a mere object, like a mail package” (156). The second theory used to justify human experimentation was Social Darwinism, where a misinterpretation of Darwin’s Theory of Evolution led many to assign inferiority to certain races (156). These philosophies and the practices that followed fueled many arguments. There were other debates out there similar to the Lacks’. The case of Moore v. Regents of the University of California was referenced in an argument against the Lacks family by Johns Hopkins defense attorneys (Baker 340). The Lacks Family prosecutors stated that Henrietta Lacks never consented to tissue collection for research and that Johns Hopkins directly violated the “due process clause of the 14th Amendment” and the search-and-seizure clause of the 4th Amendment because Lacks had cells removed post mortem without the family’s consent. Johns Hopkins argued that patients have no rights to tissue once it leaves the body (as in Moore v. Regents), and that there are no laws “protecting a patient from the nonconsensual use of their cells” (340). Overall, Johns Hopkins argued that, in Henrietta Lacks’ case, it was a justification that benefitted society.
Skloot writes that most Americans today have their tissues on file in some research laboratory, and a message from The Immortal Life of Henrietta Lacks is that the practice of nonconsensual research still exists today. The divide between science and humanity has always been a grand balancing act. The eugenic ideals of the Nazis and the resulting Nuremberg trials, the deadly Japanese experiments on Chinese prisoners, emerging technologies, globalization, the shift in cultural attitudes, and even the publication of The Immortal Life along with other human research experiments in America combine to propel the ever-changing shift in medical research ethics. Perhaps the Lacks family did not get the ultimate in terms of compensation and emotional vengeance, but what Henrietta Lacks and many others like her contributed to society, to the awareness and evolution of civil rights, and to science was a foundation of medical research ethics, accomplished “at the cost of enormous suffering by innocent subjects studied in research studies that violated the Hippocratic code” (Tzamaloukas 161). Perhaps someday medical research can be fully accomplished without violation, exploitation, or corruption, but now is not that time, as Skloot explicitly reveals.
Baker, Stacy. “Life After Death: An Activity to Investigate the Scientific, Legal, & Racial Issues of the Henrietta Lacks Story.” The American Biology Teacher 73.6 (2011): 337-40. ProQuest. Web. 6 May 2013.
Porter, Roy. Blood & Guts: A Short History of Medicine. New York: Norton, 2002. Print.
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Broadway Paperbacks, 2011. Print.
Tzamaloukas, Antonios H., et al. “Twenty-First Century Ethics of Medical Research Involving Human Subjects: Achievements and Challenges.” International urology and nephrology 40.1 (2008): 153-63. ProQuest. Web. 6 May 2013.