Human Ethics in the 1900s compared to the 2000s
"When he (Lurz) asked if she (Deborah) was okay, her eyes welled with tears and she said, 'Like I'm always telling my brothers, if you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different'" (Skloot 276). The Immortal Life of Henrietta Lacks by Rebecca Skloot, reveals the story of how scientists and doctors took advantage of Henrietta Lacks, an African American woman, who originated the immortal HeLa cancer cells before her death in 1951. For African Americans in the 1950s, individual rights were not recognized compared to present day with the civil rights laws for all people of all races. This was reflected in the medical ethics, which were extremely shallow, practiced on African Americans in the 1950s as a result of their lack of individual rights and limited education.
Laws regarding the rights to human cells and tissues in the 1950s were non-existent until they were enacted in the year 1979 (DNA policy). Non-existent laws combined with the fact that many people had limited education, so that the treatment of their bodies was at the mercy of the doctors. Doctors tended to give free service to those who could not afford to pay for their care. In return, most patients, when handed a consent form, would blindly sign it allowing the doctors and scientists free reign on research regardless of the underlying ethics. "Henrietta went straight to the admissions desk and told the receptionist she was there for her treatment. Then she signed a form with the words OPERATION PERMIT at the top of the page. It said: I hereby give consent to the staff of The John Hopkins Hospital to perform any operative procedures and under any anaesthetic (SIC) either local or general that they may deem necessary in the proper surgical care and treatment of: _" (Skloot 31). The doctors did not bother to explain what they were going to treat the patient for or how they would perform the treatment. Most patients did not understand the scientific words or phrases used in the consent forms which authorized doctors to do just about anything they wished under the designation "treatment" or "operation". The Lackses were not told the risks of the operation or of the anesthetics involved. Patients could sign the consent or suffer the consequences of not being treated. In other cases, the patients were not made fully aware of what treatment the doctors and scientists were performing which meant those doctors and scientists could get away with what they intended despite the ethics, as in the case of the Lacks family. "'No. We never gave consent form because you just go to draw blood. We are not doing some kind of medical research, you know, not long term. All we wanted is a few tubes of blood and to do genetic marker test. It's not involved in a human research committee or things like that'" (Skloot 183). This scientist said it was not a long term research project, but implied there could still be research involved. This illustrates that the doctors and scientists were not legally required to say what they planned to use the blood samples for in the research, but that they were allowed to take the blood and keep it for research, regardless of the lack of consent or morality. The 1950s were a time when some doctors would take advantage of their patients if they believed it was for the benefit of the medical world.
In the 2000s, doctors and scientists are held back by enforced laws, such as DNA Analysis Backlog Elimination Act of 2000 and the Justice for All Act of 2004 (DNA and Law Enforcement, Maschke), that were put in place for the safety of an individual's rights. The laws are strict about how scientists and doctors handle blood and DNA samples. The law also protects individual rights by allowing a donor to patent their cells for any future research, allowing the donor to benefit in any discoveries that are made. "Patenting cell lines is standard today, but it was unheard of in the fifties" (Skloot 193). The patenting protects donors in order to prevent what happened to Henrietta Lacks from happening to others. "Applied to medicine, the law must respect the individual rights of doctors and other providers, allowing them the freedom to practice medicine. This includes the right to choose their patients, to determine the best treatment for their patients, and to bill their patients accordingly. In the same manner, the law requires that the individual rights of patients be respected, allowing them the freedom to seek out the best doctors and treatment they can afford" (FIRM). Each authority has their own set of rights; however, the doctors are pulled back before they can delve into an individual's personal life to prevent manipulation, misleading information, and experimentation upon unwilling or misinformed patients without their knowledge.
Limited education in the 1950s was an additional cause of African Americans being taken advantage of when going to clinics and hospitals for treatment. Most African Americans had not finished school because they had to work to survive in the world, as Henrietta did. What little schooling African Americans were provided was extremely poor with forty to fifty people in a classroom (Disadvantages of Black Americans in 1950's). As a result of poor education, Henrietta Lacks was unable to understand what the doctors said and therefore, she was discouraged from asking questions about the treatment. "For Henrietta, walking into Hopkins was like entering a foreign country where she didn't speak the language. She knew about harvesting tobacco and butchering a pig, but she'd never heard the words cervix or biopsy. She didn't read or write much, and she hadn't studied science in school. She, like most black patients, only went to Hopkins when she thought she had no choice" (Skloot 16). Her limited education caused a lack of understanding of what the doctors were talking about, making it very easy for the doctors to mislead her into believing they would help her unconditionally. Even to others, it was clear that the Lacks family had no understanding of the medical world despite the doctors' and scientists' best efforts to make everyone believe they understood. "When Rogers made it to Lawrence's house, he expected to interview the Lackses about Henrietta, but found himself bombarded with questions instead. 'It was so clear they hadn't been treated well,' Rogers told me. 'They truly had no idea what was going on, and they really wanted to understand. But doctors just took blood samples without explaining anything and left the family worrying'" (Skloot 192). The doctors had not only taken advantage of Henrietta, but her family as well. The Lacks Family did not know any better because, like Henrietta, they had not had much schooling and lacked the knowledge that came with an education to be able to protect themselves from being manipulated.
Since the 1950s, the United States government has put in a large effort to make sure that everyone is able to obtain an education. "Under federal law, race discrimination in education is prohibited by Title VI of the Civil Rights Act of 1964. Title VI protects people from discrimination based on race, color or national origin in programs or activities that receive federal financial assistance. Title VI states that: 'No person in the United States shall, on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance'" (Findlaw). Education was once coveted by those who wished to keep it for themselves in order to manipulate those without an education. This is clear in the Tuskegee experiments where 400 African Americans went to doctors and scientists with the genuine belief that they were going to be treated; instead they were observed and experimented on for 40 years until they died (Unequal Treatment). Many Presidents to this day have made educating children of all races their highest priority. President Bush created the No Child Left Behind Act which has been used to improve school systems nationwide. "This groundbreaking, bipartisan law brought Republicans and Democrats together to expand opportunities for American children of all backgrounds and provide all our children with the quality education they deserve while preserving local control. President Bush transformed the Federal government's approach to education through No Child Left Behind. The results are clear: African American and Hispanic students have posted all-time highs in a number of categories" (General Philip Kearny School). The regulations standardizing the curriculum mean that everyone will have an equal chance to pass through school and eventually go on to college. Education is an essential key in a future where doctors and scientists are not allowed to manipulate others the way they did Henrietta Lacks.
The civil rights laws in place today were not around in the 1950s to prevent the mistreatment of African Americans. African Americans just did what they could to survive even if that meant signing a consent form without truly understanding what it did or did not state. Without the protection of the civil rights laws, there is no regard to the ethics of the doctors or scientists actions. "There's no record of readers addressing his question about medical ethics" (Skloot 176). Unfortunately for African Americans, this resulted in questionable medical ethics that were ignored by others at that time. Other people only saw the benefits that would result from the actions that the doctors and scientists took leaving those who were victimized to suffer in most cases. Despite not benefiting Henrietta Lacks, even in the 1950s, there were those fighting to prevent such victimization of African Americans when it became clear that unjust experiments were occurring. "Just one year earlier, in response to Tuskegee and several other unethical studies, the Department of Health, Education, and Welfare (HEW) had launched an investigation into federal oversight of human-subject research and found it to be inadequate. As one government report said, it was a time filled with 'widespread confusion about how to assess risk,' as well as 'refusal by some researchers to cooperate' with oversight, and 'indifference by those charged with administering research and its rules at local institutions.' After halting the Tuskegee study, HEW proposed new Protection of Human Subjects regulations that would require, among other things, informed consent" (Skloot 184). The Tuskegee experiments were one of the few experiments brought to the attention of the public taking advantage of African Americans who had no knowledge of what the doctors and scientists were in fact doing to them. Many of the Tuskegee patients had similar circumstances as Henrietta Lacks such as having very little education. This, along with the lack of civil rights laws, allowed the doctors and scientists to avoid taking the time to explain how they were going to treat the patient for Syphilis. These cases would never have been granted the authorization to go ahead today, but unfortunately for the African Americans in the 1950s, there was not much protection for them if any protection at all.
Despite the lack of education and civil rights laws working against Henrietta Lacks and other African Americans, there were still organizations, such as NIH which attempted to prevent these abuses. "Although this attitude was uncommon at the time, NIH guidelines stipulated that all human subject research funded by NIH – as McKuisck's was – required both informed consent and approval from a Hopkins review board. Those guidelines had been implemented in 1966, in the aftermath of the Southam trial, and then expanded to include a detailed definition of informed consent in 1971. They were in the process of being codified into law when Hsu called Day" (Skloot 183-184). Of course, even with all the precautions put in place there are still instances that slip through without the notice of those enforcing these guidelines. "Today, no scientist would dream of publishing a person's name with any of their genetic information, because we know how much can be deduced from DNA, including the risks of developing diseases. Publishing personal medical information like this could violate the 1996 Health Insurance Portability and Accountability Act (HIPPA) and result in fines up to $250,000 and up to ten years in jail. It could also violate the 2008 Genetic Information Nondiscrimination Act, created to protect people from losing their health insurance or employment due to genetic discrimination. But there was no such federal oversight at the time" (Skloot 198). The scientists didn't have any legal issues for exposing Henrietta's cells to the world. The consequences in place today are a great incentive for scientists and doctors to get the proper and informed consent from their patient or donor before treatments and before releasing personal information.
The 1950s were clearly a different time from the 2000s; however, many of the issues in that day resulted from lack of knowledge and cultural biases. Many of these issues have been resolved with the knowledge gained and protections introduced between the 1950s and today. Sadly, Henrietta Lacks' story has not been widely taught to past generations. Henrietta Lacks has only recently been given credit for the contributions to medical knowledge that her blood and cells have given to future generations; however, people's judgments regarding the taking of her cells remain in constant debate because of how the cultural views at the time differ from today.
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