To have a complete understanding of a present situation one must have a complete understanding of the past. Human innovation has made more leaps in the past hundred years than ever before in human history, but many of the ideas and values western society runs on have fundamental roots in much earlier societies. The roots that extended into the modernity of medical ethics laws were articulated in Ancient Greece in the form of the Hippocratic Oath.
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Unfortunately, it was not until the decades following WWII that rules regarding medical ethics were written into law. Just four years after the creation of the Nuremberg Code in 1947(a set of research ethics principles written in response to the horrendous treatment by Nazi doctors to Jewish prisoners) an individual named Henrietta Lacks’ cells were removed from her body without consent (Jonsen 97). Just as human innovation has made several leaps, the history of medical ethics has seen drastic improvements from the mid-twentieth century to the present; from the Cobbs v. Grant case making informed consent law in 1972 to the enactment of HIPAA in 1996 (Deiter).
Many medical breakthroughs occurred between 1945-65 including the beginning of organ transplantation, brain, and heart surgery, and many other powerful medical tools. Despite these tools being revolutionary to the medical community, there was not always enough of the new technology to go around, and for doctors, this became an agonizing process. So agonizing in fact, that Professor of Medical Ethics Albert R. Jonsen states: “the scientific search for answers pressured researchers to turn patients into guinea pigs” (Jonsen 100). The doctor who diagnosed Henrietta Lacks, Richard Wesley TeLinde, was one of these researchers. TeLinde, like many doctors in this time period, used his own patients for research. When Henrietta’s cells were biopsied in 1951, she was not the first person whose living tissue had been taken; TeLinde collected samples from any woman at Hopkins with cervical cancer (Skloot 30). Consent at this time was neither required nor customarily sought and as a result, Henrietta and all the other patients who had had samples taken from them were not aware their cells had been taken.
Although there were no informed consent laws for human research at this time, ironically, consent was required after death. Medical laws made it clear that consent was needed in order to legally perform an autopsy or collect tissue from the dead (Skloot 89). The sole fact that the dead had more legal rights than the living only begins to scratch the surface of the atrocities of mid-twentieth century medical ethics. In 1953, just a few years after the death of Henrietta Lacks (1951) came the discovery of DNA; new ideas of genetic engineering and control lead to the revitalization of the pseudoscience called eugenics. Racists and elitist visions reemerged out of the woodwork, this time disguised as medical diagnosis and therapy (Jonsen 103). Considering all of this took place before the civil rights movement, there were no medical laws in place to keep patients from being discriminated against due to their race; consequently, Henrietta was not the only black victim of medical malpractice. In fact, black patients were seen as easy research targets due to their socio-economic statuses and their willingness to participate in studies with the promise of free lodging, food, money, etc. One of the most jarring examples of this can be found in the Tuskegee Syphilis Study, a eugenics research project that spanned over forty years.
From the 1930’s to the 1970’s, the United States Public Health Service enlisted six hundred black male subjects in a syphilis study with the promise of free food and medical care. Of the six hundred patients, four hundred had syphilis, and were never informed of this fact, or given treatment. The remaining two hundred patients were used as a control and told by the doctors that they had had “bad blood” and needed extensive testing. The real eugenic aspect of this study lies in the fact that the subjects solely consisted of African-American’s, and only seventy-four of the six-hundred remained alive at the conclusion of the study in 1972 (Jonsen 108). White doctors had no problems condemning these men to death for the purpose of understanding how to better treat white patients suffering from syphilis. Because the civil rights movement had ended a few years after this study was released to the public, many officials found the Tuskegee Study to be appalling. On April 28, 1972, the Department of Health, Education and Welfare concluded the study to have been unethical since the beginning, and heavily criticized the failure to terminate the study after a cure had been made (Jonsen 109).
The public’s revelations toward the Tuskegee study caused a lot of anger towards racial discrimination and the medical research communities abuse of the poor. The once quiet scrutiny towards the ethics of research became a much-discussed topic in full public view. In 1972, the same year the Tuskegee Syphilis Study was released to the public a court case in California set the precedent for informed consent that would spur the creation of more medical consent laws in the years to come. Cobbs v. Grant made “obtaining informed consent a nondelegable duty of the surgeon or other healthcare professional performing a procedure” (Deiter). This was a major victory in the field of medical ethics, but consent for medical research patients was not going to be set in stone until a couple years later. In 1974, the Lacks family was summoned by geneticist Victor Mckusick to have blood drawn so he could accurately map the genes of HeLa cells. The family was never informed of this fact and were left believing that their blood had been taken to test for the cancer that Henrietta had died from. All of this happened shortly before the new federal law that required Institutional Review Board approval and informed consent for all federally funded medical research went into effect (Skloot 187). Now that battles had been won for informed consent, the new advancements made in genetic research led to new ethical problems, the major problem being the violation of privacy.
Considering how genetic information could now be gathered from a single cell, more laws would need to be put in place to completely protect future patients. Even though doctors were now required to gain consent from their patients, there were still no existing laws that would protect patients medical privacy. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) required the US Department of Health and Human Services to create regulations that would protect the privacy of certain health information (“Summary of…”). 1996 was also one of the first years where Henrietta Lacks was given genuine credit for her contributions to the medical community. On October 11, 1996, Robert Patillo organized the first annual HeLa Cancer Control Symposium, which coincided with the first Henrietta Lacks day (Skloot 219). This gathering of scientific minds would not only commemorate Henrietta’s impact on their community but would also celebrate working in a medical field that now legally informed and protected its patients. In more recent medical ethics history, euthanasia has become one of the most heavily debated topics within the medical community, and the public. There is a hidden irony in the fact that at the time of Henrietta’s death in the mid-twentieth century, consent was only necessary following death for an autopsy, but today individuals do not have the right to choose when they die.
However, the euthanasia issue does not only involve death but brings up ethical issues similar to the ones explored following Henrietta’s non-consensual biopsy. Euthanasia brings up issues of liberty, the right to privacy and control over one’s own body. As of current US law, physician-assisted euthanasia is unlawful in forty-seven of the states and is tantamount to homicide in the eyes of the American Medical Association. Of the three states that have legalized physician-assisted suicide, only Vermont and Washington allow the doctor to administer the lethal dosage to patients; in Oregon, a doctor may only prescribe the medication but cannot administer it. Of course, these laws do not apply to all individuals, the patients in questions must be of sound mind, and have been given the grim prognosis of fewer than six months to live (“United States Law…”). Euthanasia is a difficult medical ethics issues that tries to answer the heavy question of “who has the right?”, but this is a question that can be inputted into Henrietta’s case and the cases of informed consent, and medical privacy. “Did doctor TeLinde have the right to biopsy Henrietta’s cells to further science?”, “Should doctors have the right to perform research without consent in order to obtain larger amounts of information?”.
More of these questions could be asked in response to many historical medical ethics events, but the fact that answers to some of these questions are now available show the evolution of human ideologies and values. Following the death of Henrietta Lacks in the mid-twentieth century, the medical ethics field has written several laws into being as well as brought up new issues of debate. People living today can confidently walk into a medical office or hospital without fear of being misinformed of their treatments, and with the full knowledge that their health care information is being protected. Just as the scientific field has Henrietta Lacks to thank for her contributions to medicine, the people of the twenty-first century have humanities changing values to thank for the modern laws in medical ethics. Humanity has come a long way from the creation of the Hippocratic oath some two-thousand-odd years ago and will continue to make strides towards becoming a more progressive, ethical, society.
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