Guest Blog by Danielle Budlong

Part Two of The Immortal Life of Henrietta Lacks, “Death,” is arguably the most historically significant and fascinating section of the book [Rebecca Skloot, The Immortal Life of Henrietta Lacks (New York, Random House Inc., 2011): 89-176.]. It begins with the end of her life, but the beginning of her immortality. Serendipitously, Dr. Lawrence Wharton Jr., Henrietta's surgeon at Johns Hopkins where she was treated for cervical cancer in 1951, had collected a tissue sample from her tumor [Skloot, 31,33]. Dr. George Gey's assistant in the tissue culture lab soon discovered that Henrietta's cancer cells did not die like every other human sample thus far, but reproduced prolifically [Skloot, 40-41]. This would begin the journey of her cells of an epic proportion, a journey that would raise serious ethical questions, conjure metaphysical fears, and bring about more scientific discoveries than anyone could have imagined.
    In the absence of the regulation and oversight that the medical research community has today, the doctors that obtained Henrietta's cells, HeLa, had virtually free rein. They were bought, sold, given away, injected into patients, often without their consent. African Americans, Jews, and prisoners were used as test subjects, more often than not without their consent or with minimal notification of the dangers involved in the particular study [Skloot, 128-130,167,]. Researchers fused mouse cells with HeLa cells, not for nefarious reasons, but panicking the public, to whom the media fed images of half-human, half-animals  [Skloot, 142-143].
    However, research flourished, while Henrietta's family did not. Microbiological Associates used HeLa to start the first large-scale cell distribution center, spurring a multibillion-dollar industry [Skloot, 100-101]. Meanwhile, Henrietta's children had to be distributed to family members, where they were abused and in poverty. The grown Lacks children have intermittent insurance, major health problems, and still live in poverty [Skloot, 163]. However, through all of this activity around HeLa, researchers accomplished great things. They realized the need to standardization in cell culture to efficient and repeatable research. The cells were used in the research that resulted in the polio vaccine [Skloot, 96-99]. The cells were instrumental to the process of gene mapping and have contributed to the development of chemotherapy drugs [Skloot 139,142].
    Henrietta's family was not aware that any of this was going on. Due to tradition, superstition, and lack of information, they related to the world in metaphysical ways. They used fears of the supernatural to help explain the events that they did not understand. This was partly due to the fact that the medical community that was working with HeLa cells did not bother to learn about the women from whom the cells came, let alone consider the family. When Henrietta's children were little, they had to stay away from Johns Hopkins for fear that “Hopkins might get us,” and this fear was probably in part based in reality [Skloot, 165-167]. Henrietta's cousin tells the story of Henrietta's funeral service, when, as they were covering her coffin with dirt, a violent storm broke out and killed a family member [Skloot, 92]. The family did not understand what happened to Henrietta, so there must have been something supernatural at work. Skloot experienced this firsthand when she visited Henrietta's cousin “Cootie.” He explained that since Henrietta died, but her cells lived, the sickness must have been the result of either voodoo or the work of the doctors. He described seeing an enormous, headless, tailless hog, dragging huge chains, getting ready to charge at him one night, but luckily the apparition was scared by a car and ran off into the family cemetery [Skloot, 81-82].
    The underlying question Skloot seems to be asking is, after all of the scientific breakthroughs that came from the studies of HeLa, was it worth it the ethical transgressions? The medical community would likely answer in the affirmative, but may have a more difficult time answering the question, does her family deserve a part of it? They took Henrietta's cells without consent, and even though that may have been common practice at the time, she still deserves to be recognized and honored. Providing her heirs lifetime full medical coverage seems a small price to pay for what they reaped from the use of her body....But who should pay?

Guest Post by Sarah Murphy

Medical Advancement versus Cultural Beliefs

The LIFE of Henrietta Lacks

            To be moved, conflicted and evermore curious you only need to start reading Rebecca Skloot’s The Immortal Life of Henrietta Lacks [Rebecca Skloot, “Life,” The Immortal Life of Henrietta Lacks, (New York: Crown Publishers, 2010)]. The first part of her book, entitled “Life,” makes you question the development of the modern medical field, and draws you into the story of a woman’s life that has greatly been overlooked in the history of medicine. Henrietta’s cancer cells would be found to never die, unlike most human cells; Henrietta Lacks’ cells would become known as HeLa. Skloot intricately ties together a complicated timeline that involves the medical developments leading up to the “discovery” of the HeLa cells, what is known of Henrietta Lacks’s life up until her death in 1951, the beginning of Skloot’s journey to discover the story of Henrietta and her family and trying to put the reader into the culture of the mid-20th century that included racism, sexism and elitism that is difficult for us to comprehend.

            Part One develops as Skloot travels back and forth between her personal journey to discover more about Henrietta Lacks and the series of developments in cell cultures and cancer-fighting technology. She starts with Henrietta’s first exam where she was diagnosed with cancer. Outlining the foreign nature of hospitals to those who grew up outside of the medical culture, like Henrietta, and especially the difficulty of receiving medical care as a poor African American in Baltimore, Maryland. Skloot talks about Henrietta’s life from her childhood up until her diagnosis. To balance the story, Skloot includes a couple of chapters of medical developments and discusses the complex views of the medical field by the public, particularly surrounding cell cultures. The last aspect of Part One revolves around Skloot’s personal journey to get in contact with Henrietta’s family, and her tumultuous start to uncover a family’s history of loss, distrust and manipulation.

            While the story unweaving before the reader brings a whole mix of emotions, one of the main aspects of Skloot’s Part One is the conflict between general population, specifically the rural poor, and the development of the medical field. There was a complete disconnect between the developing medical field and public understanding and acceptance of modern medicine. Henrietta was just one of the many that came to a hospital, but not understanding fully her diagnosis or the treatment implications. While it was common practice for doctors to explain that radiation treatments would most likely make her infertile, Henrietta did not understand until it was too late that the treatment would make it so she could not have another child (Skloot, 46-7). A gap in language and understanding was the likely culprit of this tragic misunderstanding, but the fact the Henrietta also did not grasp the seriousness of her condition, and that it was likely a choice between fertility and life, and she said if she had known she would not have gone through the radiation treatments (Skloot, 47).

            With such a disconnect in understanding and priorities it is not surprising that many people did not want to have biopsies taken to be used for experimentation, but without this practice medical advancement would likely not have occurred at the rate it has. Even though Henrietta’s husband was asked if doctors could take samples of Henrietta’s cells after her death, his lack of full understanding of the implications did not prevent them from taking those samples, and continue using the samples previously taken without Henrietta’s knowledge. While we would like to say that the doctors were purely in the wrong, without Henrietta’s “immortal cells” many of the medical advances that they lead to would not have happened, or at least would have not had happened as early as they did.

            There is an ethical issue that people still struggle with today regarding the line between patient permission and medical advancement. Had Henrietta been more educated and had an explanation about the impacts her cells could have on the world, would she have agreed? Do doctors have the right to disregard cultural beliefs in the name of saving lives? Skloot has only begun to dive into these issues in Part One, but her open-minded pursuit of the truth allows for a controversial issue to be addressed from all sides simultaneously. The level of respect Skloot brings to the varying interpretations and lives involved in the “discovery” of the HeLa cells allows for a productive conversation around a part of history that is often brushed aside and forgotten, but is very much relevant.

Guest Post by Annie Potter

Controversial and Chaotic Contraceptives

The pill was one of the most controversial issues raised in the 20th century. During this period of time there was a real concern of overpopulation worldwide and the dwindling amount of resources. “ Thus fear of self-annihilation through the depletion of natural resources meshed easily with Cold War concerns about the spread of communism and nuclear extinction”[Andrea Tone, Devices and Desires: A History of Contraceptives in America. New York: Hill and Wang, 2001, 200-292].

Feminists feared that the big drug corporations were using women as guinea-pigs to further the development of the birth control pill. To women in the 20th century it was freedom, freedom to control one’s body. Filled with fear and suspicion the African-American population considered the pill a form of racial genocide. “Throughout the 1960’s and 1970’s nationalists reiterated the long standing fear that birth control would lead to race suicide by subduing the size and strength of the black population. African-Americans could not afford attrition at the time when blacks had finally gained, through the Voting Rights Act of 1964, the promise of universal suffrage. Large black families were the community’s insurance against racial experimentation, its best promise for political and social gain” [Tone, 254-255].

Margaret Sanger and Katharine McCormick took interest in the pursuit of the birth control pill. A pill that would place women in control of their bodies. In Margaret Sanger’s point of view the pill would liberate women from the control and reliability of men to prevent pregnancies. “ The pill accomplished what the diaphragm had not. It created widespread doctor and patient acceptance of medical birth control” [Tone,201]. With the determination of Sanger and the financial backing of McCormick the development of pill would occur through the work of two scientists (Dr. Pincus and Dr.Rock). Although Sanger was a supporter of the pill McCormick kept a close watch on Pincus and the development of the pill. The first large-scale clinical trial for birth control was held in Puerto Rico where Pincus believed was far away from the probing American media. The result of the trial proved mediocre at best and several horrible side effects occurred. “ Then too, there were the medical side effects: nausea, dizziness, headaches, stomach pain, and vomiting” [Tone, 223]. Pincus thought the side effects were minimal enough that the pill still could be marketed within the United States. In 1957, the oral contraceptive Enovid was released to the general public. Most American women overlooked the side effects because the benefit of non-pregnancy was extremely effective. This opportunity provided women with choices concerning family matters and career aspirations.

Although the birth control pill was a promising contraceptive IUDs would become America’s most used contraceptive. “ In this political climate, the development of intrauterine devices seemed a godsend. Cheaper than the pill, virtually impossible for a women to remove, and requiring only a single ‘ motivated’ act--the decision to have one inserted--the IUD seemed too good to be true” [Tone, 263]. The most notable and infamous IUD is the Dalkon Shield created by Hugh Davis. Later Irwin Lerner modified the Dalkon Shield and filed a patent as the sole inventor. The Dalkon Shield was released in 1968 and over two million women used it. The Dalkon Shield was cited as the most effective and safe IUD in the market. Later the Dalkon Shield would prove to be anything by reliable or safe. The “Dalkon Shield caused over 200,000 infections, miscarriages, hysterectomies, and other gynecological complications and led to an untold number of birth defects , caused by contact between the device and the developing fetus” [Tone, 279]. Unfortunately, the FDA had limited power to regulate the medical device industry. Only after the fact of ineffectiveness and danger could the FDA remove the product.“ In 1984, the company’s legal team was rattled by the actions of Judge Miles Lord, a federal judge in Minnesota who had been assigned to hear twenty-three Dalkon Shield cases...The judge’s consolidation order denied the company the opportunity to defend itself by examining and attacking each plaintiff’s sexual history” [Tone, 281]. Dalkon Shield lost the lawsuit and thus resulted in the recall of the product in 1984.

Guest Post by Allison Barker

Sanger’s Dilemma

Most folks have at least heard of Margaret Sanger, the 20th century feminist and proponent of birth control access.  Focusing on her work from the 1920s onward, Sanger faced a not-so-unique dilemma.  A not-so-unique dilemma faced by many past and present progressive movements:  the separation of an issue (in this case, women’s access to birth control) from the oppressed group struggling to achieve their goals.  We’ve seen this in the woman suffrage movement (moving the focus from woman suffrage to arguments of state pride and the benefits for male voters) as well as the modern LGBTQ rights movement (moving the focus from the voices within the LGBTQ community to awarding non-LGBTQ people for their behaviors/achievements).

One particular dilemma faced is outlined in various sections of Andrea Tone’s book, Devices & Desires.  Sanger, infamous for her then-illegal birth control clinic in New York established in 1916, envisioned a populist approach to contraception “where women from all walks of life could use contraceptives without reliance on doctors” [Tone, Andrea. Devices & Desires: A History of Contraceptives in America. (New York: Hill and Wang, 2002), 118].  Sanger soon distanced herself from this approach, as well as distancing her birth control advocacy from women’s rights.  Instead of advocating for birth control as a woman’s right to contraception, Sanger chose to focus on birth control from a medical standpoint.

During the 1920s Sanger was committed to inexpensive/free birth control for women (without the need for a doctor).  Period.  It was a radical idea for the time, one that not even the National Woman’s Party (formed by Alice Paul) would support.  Sanger quickly learned two things: the extent of sexual reform was extremely limited in the early 20^th century, and the political and social influence of medical science was greatly increasing.  “Narrowing her agenda, she sought birth control allies through an ideology that trumpeted women’s health over their civil liberties and cast doctors, not patients, as agents of contraceptive choice” [Tone, 125].  Sanger also began to oppose over-the-counter contraceptives “whose use bypassed physician expertise” [Tone, 125-126].

Herein lays the dilemma. Sanger’s focus on contraceptives as purely a medical issue accomplished two things: it created distance from the woman’s movement (which was costing Sanger many male allies) and began to bring doctors and physicians (who were dominantly male) into Sanger’s corner.   Do to Sanger’s efforts (and ironically the Comstock Laws, which permitted prescriptions by physicians), birth control could now be watched over by experienced medical professionals further legitimizing contraceptives, but at the cost of putting health above patients’ rights. 

Sanger became stuck in an interesting pickle on the topic of women’s rights.  On one side she opposed the use of condoms “because they forced women to depend on men for fertility control,” [Tone. 126] but due to her result-motivated approach to the medicalization of birth control, “doctors’ power [increased] over women’s bodies” [Tone, 138].

Unfortunately for Margaret Sanger, her ideals regarding accessible and safe birth control for women became a by-product of her time.  The early 20^th century was not a friendly time regarding both the morality of women’s rights and of contraceptives.  The era was ripe with ideas similar to those of Anthony Comstock in regards to equating birth control to promiscuity and murder (in the case of abortion).  Sanger needed to ally herself with doctors and big businesses (suppliers of contraceptives) and put medical science before patients’ rights in order to make any progress during a very restrictive era.  It is important to note that while Sanger advocated for medical involvement in contraception, she understood that working-class peoples (the demographic she primarily focused on in her clinics) would have restricted access to medical professionals.  Tone ends the chapter stating that “to her [Sanger’s] credit, she never gave up her goal of quality birth control for all” [Tone, 149]. But due to the volatile nature of morality (such as the morality that drove Anthony Comstock’s obscenity crusade) on the topic of women’s issues in the early 20^th century, it is impressive what Sanger managed to accomplish.

Guest Post by Liz Girres

The Creation and Use of Birth Control in Different Socioeconomic Classes

            Socioeconomic status has always played a part in who could create or obtain birth control. When the Comstock act was first passed in 1873, major companies had to stay out of the illegal distribution of birth control as to not harm their reputation [Andrea Tone, “Devices & Desires: A History of Contraceptives in America” (New York: Hill and Wang, 2001): 1-87.]. That being said, not all of them did. Samuel Colgate was president of the New York Society for the Suppression of Vice (NYSSV), and heir to a soap company [Tone, 28]. Even though he was fighting against obscenities, he put out a pamphlet about how Vaseline was a good contraceptive [Tone, 28]. He wanted to oppose obscenities but profit from them at the same time. Colgate was part of the elite class and was never charged for distribution of lewd materials. This exemplifies the biased enforcement of the Comstock Act. More often than not it was the smaller business owners that got arrested.

            It makes sense that bigger businesses would get more leeway when it came to the distribution of birth control. They had money and money is power. They were able to disguise their intentions in seemingly harmless ads. One example of an ad was for “Sanitary Sponges for Ladies” [Tone, 38]. They were sold under the pretense that women needed to keep their vaginas sanitary. When they were full of antiseptics they would get rid of germs [Tone, 38]. However, it was obvious that the real purpose was to kill sperm and prevent pregnancy. The bigger businesses were able to get away with advertising contraceptives because of their already respectable names.

            Margaret Sanger believed that the elite class had more access to better birth control than the working class [Tone, 79]. She saw women in the tenements that seemed to be in desperate need of birth control. She saw women waiting to get an abortion because they couldn’t afford preventive birth control [Tone, 79]. She thought that the upper class has more knowledge of birth control than the working class. The ignorance of the working class led them to rely on gossip about birth control. They also didn’t have as much money to pay for the products [Tone, 80]. However, many scholars believe that Sanger exaggerated a lot. Her conclusions didn’t always match up with what she described [Tone, 80]. If a woman was able to pay five dollars for an abortion, why couldn’t she have just bought a twenty-five cent condom to begin with [Tone, 80]?

            Logically, the availability of birth control to both classes makes sense. The upper class had more money to pay for it and more resources to find it. The lower class had more need for it and shared with each other different methods and places to get it. It seems likely that the lower class had a greater need for contraceptives. They had large families that needed to be fed on a lower salary. Spending a few cents on contraceptives could save them a lot in the future. They would have less stress and will be able to take care of their other kids better.

            The use of contraceptives in different classes is significant because of its implications on the health of women. Some of the methods were very unsafe and could cause a lot of harm. Condoms were reused multiple times, which could have led to infection and the spread of disease. IUDs could be made my anybody, and were often made of metal, glass, or wood [Tone, 61]. In the lower classes, they did not have money to afford a doctor and women could die from using certain forms of birth control. The upper class had doctors and possibly more knowledge of safe forms of birth control. Socioeconomic factors played a big role in the distribution, conviction, and use of different people.

Guest Post by Michelle Smail

Nursing Professionalization: Good, Bad, or Just Ugly?

           

Professionalizing nursing would “standardize and raise” [Susan M. Reverby, Ordered to Care: the Dilemma of American Nursing, 1850-1945. Cambridge: Cambridge University Press, 1987,121-207] the educational requirements as well as creating a greater amount of power and professional recognition for those nurses who would also be part of a smaller pool of nurses thus increasing job availability. However, there were many consequences for these advancements . Many women who had become nurses, particularly working nurses, would find themselves excluded [Reverby, 121]. This professionalization, which came with demands for higher wages and greater respect in the work force, also created a dilemma of how to maintain their status as ladies while still pushing for these changes. Such professionalization also threatened the men of the hospitals who worked as doctors, surgeons, and administrators because they feared that such professionalization would create competition for them and would decrease their relatively cheap work force of student nurses [Reverby 121].

A graduate nurse’s place in the medical community was already unique and isolated before these pushes were made. Professionalization seemed only to further alienate her from the largely male members of the medical community as well as working nurses whose goals and desires in regards to their nursing careers were vastly different from that of the upper class graduate nurses who were organizing and directing these professionalization attempts. This can be seen particularly in the educational standards that were put forth by the upper class graduate nurses. They pushed for requirements of high school diplomas and tighter restrictions on the issuing of licenses. Yet they ignored reform issues such as wages and forbade unionization because these actions seemed unprofessional and shallow in contrast with the ideals that the upper class graduates valued.

 Because smaller schools often did not meet these educational standards, graduates of those schools often found themselves fighting the professionalization of nursing because they feared “to have their status and standing lowered” [Reverby, 127] when the standards held strong legal backing. Along with opposition from the small school graduates, there was opposition from many of the state-nursing board members in regards to the requirement of a high school diploma to be a registered nurse. This is not altogether shocking when one considers that many of those members “were not themselves high school graduates” [Reverby, 127].  In an ironic twist, as the nursing community was trying to create an educational line to who was and was not a professional nurse, they were fighting against physicians who didn’t want nursing to be professionalized for the simple reason that they believed that “nurses are helpers and agents of physicians; not co-workers or colleagues” [Reverby, 131].

The essential split in these two groups of nurses seeking reform was that, “those eager for registration and higher standards focused on entry requirements and nursing education, whereas nurses already in the field were occupied with the conditions they faced at work” [Reverby, 134]. So rather than a united community of nurses taking on the medical community and gaining better pay, increased avenues of employment, and greater respect in the workforce, these two factions spent a great deal of time fighting against each other instead. Furthermore, the working nurses felt alienated from the upper class nurses because “they refused to accept the judgment that only those with pure noneconomic motives could be true nurse” [Reverby, 131]. This was one of the largest points of contention between the often upper class nurses from large schools that held the positions of leadership within the nursing organizations. These working nurses actually needed the funds from their work to support themselves and often a family. Therein lies the difference, their motivations and backgrounds were so very different that seeing eye to eye became nearly impossible.

---

Guest Post by Carol Santos

Character As Skill: The Ideology of Discipline

A person who wants to study in order to be a nurse, teacher, or other field needs to go to school and be organized. Florence Nightingale was a woman who influenced the model for the training of American nurses in the nineteenth century. As Susan Reverby notes, Nightingale believed that character was the skill… “critical to the ‘reformation’ in both nursing and hospital care.” [Susan M. Reverby, “Ordered To Care: The Dilemma of American Nursing, 1850-1945 ,(Cambridge: Cambridge University Press, 1987), 41.] This was very interesting because in order for a woman to be a nurse, skill was not that necessary; instead, character was important and that was the skill a woman needed to have. Another strategy for women to enter in the field of nurse was “discipline” because they were carefully trained for homes and hospitals. One of the biggest reasons why Nightingale started a model and disciplined nurses was the fact that she faced disasters in the military and civilian health care. She fought for the training of “proper” nurses. Nightingale did not wanted to see this again and because of her ideas and contribution to a better change in the world of health she wanted to see character as a skill.

“The ‘Nightingale model’­ thus emphasized character training and strict discipline, a distinct field of work for nurses separate from physicians, and a female hierarchy with deference and loyalty to physician authority.” [Reverby, 43.] If a woman truly wanted to be a nurse, she would need to be serious in this field and not mix in feelings or problems while getting trained. Nightingale was very serious in training nurses and perfecting them because nurses were needed in homes or hospitals. She really wanted women who truly wanted to be nurses and were passionate about it.

Also, behavior was very important while taking classes in order to be a nurse. Behavior was expected from every student because as in any family or institution, behavior is widely from the expected norms. Since behavior was important, they also needed to have spirit in order to become a nurse. They needed to be passionate about being a nurse so the students could graduate and get recommendations letter from physicians or nurses. At the same time, lessons were very crucial and strict by physicians and nurses. This was to teach students a lesson and once they graduated, they would change the way they were before. An example of this is when a teacher told her graduating students, “You have become self- controlled, unselfish, gentle, compassionate, brave and capable- in fact, you have risen from the period of irresponsible girlhood to that of womanhood.” [Reverby, 58.] Students would become well educated, even though teachers were really hard with them.

Many physicians and nurses followed the Nightingale model that taught the students the proper ways, manners, and character to have as a nurse while working in homes or hospitals. Character was expected from students because that was a skill a person needed to have. Even though rules were very strict in medical schools, students were graduated with different personalities. Students would differentiate work, way of conduct, and character as skill.