BLOG #2: Research & Bioethics

REFLECT ON ONE OF THE FOLLOWING QUESTIONS FOR YOUR NEXT BLOG:

One of the arguments against giving people legal ownership of their tissues is summarized in the following quote from David Korn, vice provost for research at Harvard University: “I think people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research.” However, in a profit-driven health care system, all citizens do not have equal access to the treatments and medications made possible by tissue and cell research. What are the intended and unintended consequences of a profit-driven health care system?

                                                                                          OR

Discuss the process of scientific inquiry in The Immortal Life of Henrietta Lacks. Examine the often contradictory forces of altruism and profit as they influenced research related to HeLa. What are the risks and benefits of allowing profit to guide research? What are the obstacles involved with conducting research purely for altruistic reasons? (Random House)

He La Cells Part 1

Jefferson, Jameka Shonte’

He La Cells Part 1

20 July 2012

He La Cells Part 1

I am learning so much about how African American were treated in the 1950s.Rebecca
Skloot knows more about the African American history than I do and I am an African American. The Immortal Life of Henrietta Lacks makes me want to learn more about the African American history and be aware of their struggle for freedom.

Part one was very disturbing to read because segregation played a major role in how Henrietta was treated as a patient. If Henrietta was a Caucasian patient, then maybe she would have gotten treatment earlier as opposed to when her condition gotten worse. Chapter eight has a quote that demonstrates how African Americans patients did not receive the same treatment as Caucasian patients:

“According to Howard Jones, Henrietta got the same care any white patient would have; the biopsy, the radium treatment, and radiation were all standard for the day. But several studies have shown that black patients were treated and hospitalized at later stages of their illness than white patients. And once hospitalized, they got fewer pain medication, and had high mortality rates” (64)

Since African Americans never questioned a Caucasian doctor, then Henrietta probably thought it was too soon to get treatment. I think even if Henrietta voiced her opinion, then the doctors still would not have believed her.

            As the days went on, Henrietta was slowly dying and scientists did not care whatsoever. Scientists treated Henrietta as a lab rat and only cared about making vaccines. It is obvious that George Gey did not care what kind of condition Henrietta was in because her cells were the key to understanding different types of diseases. The doctors were helpful to a certain extend; however, they wrote lies in her medical file to so they do not get in trouble. They could have at least told Henrietta that the radium treatment will make her infertile.

            I do not think that it should matter what type of ethnic background Rebecca comes from. Rebecca had to prove to Roland Pattillo that she was not another Caucasian person trying to write a journal about He La cells. She spent almost ten years writing the book, which means that she wanted people to feel the pain Henrietta went through as oppose to writing a generic biography. Rebecca makes Henrietta come alive in the book and I can get a sense of what type of person Henrietta was.

I apologize for posting my blog so late.

Reflection on Henrietta Lacks

        The story of Henrietta Lacks brings to light the issue that the American Healthcare system had evolved from the injustices and immoral treatment of the American public. Skloot, the author of the text, informs the reader in such an intimacy that it leaves no room but to exercise the fact that we too have been betrayed by the healthcare system. Injustices such as those enacted in Tuskegee Syphillis experiment (1932-1972), and the studies that were undertaken at the Jewish Chronic Disease Hospital (1962), depict the magnitude of unethical treatment that researchers have taken in the name of science. The poor, disabled, and minority community have always been the driving force in research discoveries, by way of the use of their bodies, the disrespect for the lives, and the lack of acknowledgment for their part in the progression of medical research.

As far as federal laws go, Henrietta Lacks belonged to the demographic that had the least rights among any other race or gender. The injustices committed against the black community as whole do not begin to amount to those done solely on black women. Skloot mentions that Henriettaís family had come about through slave-slave owner relationships; these were in no case romantic, or heroic relations. Slave owners were known to rape the young women that, ìbelonged,î to them, as a form of pleasure and dominance. Living under the oppression of her family history, Day, and the medical staff at John Hopkins Hospital, it appeared that Henrietta Lacks was actually a very likely candidate for the removal of her tissue and the treatment she received. In fact Skloot makes it clear that this was a common practice at the time. Henriettaís story was one of many other black women who suffered the same unethical treatment, yet it was taken an extra step as they exploited the use of her cells world-wide.
      
        A dark part of Henriettaís life expands through the life of Elsie, Henriettaís oldest daughter. She was born mentally disabled and was soon placed into a hospital for the ìNegro Insane.î Later in the book Skloot details the horrors behind Elsieís untimely death, as she had been used in epilepsy studies. Elsie along with many other patients was among the largest clientele used in research studies. Elsieís files revealed a deformed face that had been repeatedly transformed by unnecessary treatment.

(sorry unfinished)

Michelle Reid

The Immortal Life of Henrietta Lacks

            The book commences with Henrietta feeling sick, in a time where doctors were poorly available to colored people, and education was a privilege, it is clear that people in this time were in wonder. She felt a pain in her stomach, which she sought to her cousins for advice; to the best of their knowledge they advised her that it was probably aches from pregnancy. When Henrietta soon became pregnant, it made sense to blame the “knot” in her stomach on the pregnancy. A woman knows her body, and as Henrietta insisted, something was wrong. She went to the hospital and what amazed me was her medical record. She had been diagnosed with gonorrhea, and syphilis prior to this doctor visit. When the doctor examined her cervix and ran tests on the lump, it tested positive for cervical cancer. From there on, the book goes into a lot of history about Henrietta and her family, which really make everything a lot clearer. What really shocked me was the amount of colored people that had been diagnosed with STD’s. It makes sense when the book explains how her grandfather and other men would take their tobacco to get sold, and would stay in a warehouse over night. Where the white were privileged enough to sleep in lofts and beds, the colored were sent to a basement and left to sleep in filth. Aside from sleeping in filth, the men would have careless fun. There was gambling, drinking, and worst of all prostitution. It makes sense that these men would possibly have sex with prostitutes and then come home have sex with their wives, and pass diseases. Who is to blame? Is it the prostitutes, the men, or society? The colored didn’t have the proper sanitary conditions, and the men mostly forced upon sex at that time to the woman. There were no condoms, no STD check, no free clinics, and no birth control. The only way you knew you had it was when you finally realized something out of the ordinary, sometimes pain, and went to the doctor to find out you had some disease. It is important to take into account how poorly educated these people were, so for a doctor to tell them they have gonorrhea or syphilis it seems many disregarded it. For some reason in the opening chapter where Henrietta’s medical history is explained, when she was told about both STD’s she either declined or never went back for treatment. As the cancer intensifies throughout the book Henrietta remains strong, and tells no one. This might have been out of embarrassment or pride.  What really interested me was the radium treatment. As it is known now radium is extremely dangerous, but this is what was used to treat her cancer. To treat her cancer they sowed a tube in her cervix, and allowed it to react, in hope of killing the cancer cells. Now it is easy to blame the doctors now that we know of the danger, but this time was a time of experimentation. All these medical procedures if not new, had little to no literature to back them up. We are lucky that modern medicine is at its prime, the experimentation age is over, and for the most part diseases can be cured. Unfortunately, Henrietta like many other colored patients were experiments. When Henrietta’s case worsened and she became a resident in her hospital doctors didn’t know how to treat her. So they attempted practically everything they knew, for the cancer, they blasted her body with radiation after radiation, which made her skin charred. For her pain they tried morphine, Demerol, Dromoran, and even alcohol injections straight into her spine. Tumors kept appearing and appearing all over her body, and still they attempted to “cure” her. When in reality they were killing her. Now for an uneducated black person at this time, it would make sense to avoid the doctor because one can say I was fine up until I went to the doctor. Going to the doctor would turn out to be “worse” in some cases like Henrietta’s, also these poor colored people knew nothing about science, and could barely if that read. They would allow the doctors to do as they pleased, because they were white, and educated. This made it easy for blacks to become experiments. Henrietta was a living experiment, and those cells that were taken from her are still alive. 

the spirit love, and rasicm of HE LA

Israel Santana
7-20-12

The immortal life of Henrietta lacks.

In the book the immortal life of Henrietta Lacks there are several key issues that form the book’s plot racism, medical ethics, spirit and love. Henrietta was a black woman who grew up in a tobacco plantation in Clover, Virginia. She had little education and at a young age married her cousin which was the norm then. She moved to Baltimore where her life would take a hard turn. The story begins January 29, 1951 during the heart of segregation and Jim Crow laws in Baltimore. Henrietta Lacks goes in to John Hopkins hospital to check out what she called was “a knot I her womb”. She had told several family members about it before and assumed that it was maybe the “bad blood” her husband David Lacks had brought home from his infidelities. This would later be the key of why Henrietta’s cancer cells would become her ultimate demise and a revolutionary step forward for medical science.

The book is written and narrated by journalist Rebecca Skloot who came across the name HE LA in biology class when her instructor told the class all the marvelous discoveries and medicines HE LA cells helped developed. He said that the cells came from a black woman. When Rebecca asks who she was he had no answer for her this would become the start of an emotional, historical and scientific journey towards the true origin of these cells and it would uncover the turmoil that came from the Henrietta’s cells.

 During 1950’s many black Americans were accustomed of never question any medical advice. During her exam the gynecologist found she had a tumor near her cervix. After her visit Henrietta never brought up her condition to her husband, she didn’t want to alarm or burden anyone so she went on with her life. During her exam the doctor took a tissue sample of her cervical cancer to study it. During the time Dr. George Grey was head of tissue culture research at Hopkins hospital. He was developing methods to grow cell cultures outside the body with no results until he came across Henrietta cells. Henrietta returned to the hospital for surgery and gave consent for invasive surgery. The technique for treating cervical carcinoma was to use radium which was a white radioactive metal that glowed blue. This was a double edged sword because it caused serious side effects and would kill any cells in come in contact with including further mutations in cells. Before the surgery no one told Henrietta that they were not collecting tissue samples of her tumor cells in order to grow outside her body nor would she ever know how important the cell would become to science.

The people that grew her cells worked under Dr. George Grey, they were his wife Margret Grey a surgical nurse, and Mary Kubrick a lab technician. These two women were vital to the creation of the HE LA cells growth. Margaret was the one who developed the procedure to create the medium in which the cells grow. The cells were transferred and monitored for several days with the expectation that they would die like the rest but they continued to grow and multiply at an incredible rate. Soon Dr. George Grey had found what he was looking for, an immortal cell that can self replicate outside the body. While Henrietta’s radium treatment continued she lived her life like normal hanging out with family members and taking care of her three kids, David Jr., Deborah, and Joe. However one child was missing Elsie the oldest daughter. Elsie was born with a form of retardation which was diagnosed as “idiocy “not knowing how to take care of her after Henrietta’s fight with cancer Elsie was sent to the Baltimore, at Crownsville State hospital for the negro insane.

Henrietta returned to the hospital complaining the cancer was spreading. The medical reports stated there were no signs of the cancer reoccurring. However the abdominal pain continued and the doctors took x-rays that showed the cancer came back aggressively her urethra was blocked which made it hard for her to urinate. The cancer was diagnosed inoperable and she was sent home. Through the course of her treatment Henrietta didn’t show any off her symptoms the only thing that showed her eyes beginning to sink in. the doctor began to use aggressive technique in order to stop the tumors from growing. The radiation d=treatment left her abdomen charred and the cancer continued to grow inside her.

In order to uncover exactly who the women behind the HE LA cells were the author Rebecca Skloot had to go through a gauntlet of dead ends and obstacle. She had to gain the trust of the family and some of the people acquainted to them. She would get in contact with David Lacks himself but soon Rebecca would find out she wasn’t the first and only one to try and uncover the truth behind Henrietta Lacks. David would tell her that Hopkins stole his wife cells and they killed her, he was upset and he wouldn’t talk further about it. Rebecca had to do a little investigative work, so she soon found Mrs. Speed. A grocery store owner and close friend to the Lacks family. Ms. Speed told just how deep the turmoil the lacks family was going through due to the creation of the HE LA cells. Many reporters, film makers and scientist continued to exploit the family for their own gain without giving any information as to where how of what happened to their mother and why they took her cells without anyone’s consent.

Henrietta died October 4, 1951, she underwent excruciating painful treatments and the cancer continued to litter her body, she would never know that some where her cells thrived and grew while she was dying, her cells would become bigger than she ever was in more than one way. But her spirit and life would continue to haunt those that knew and loved her, until the truth behind her life and unforgiving demise was uncovered. And the one that would step up to do that was a white female journalist.

Reflection on Henrietta Lacks

Despite understanding the suffering of Henrietta Lacks, Deborah lacks, and essentially the Lacks family, I believe that it is hard to even start the discussion of the unethical practices in science and medicine in relation to disadvantage and oppressed communities before even discussing the ontological issues that present themselves.  I say this because if society, whether mainstream or in general, cannot recognize various ethnic groups, and in this case blacks, as being human and essentially capable of suffering, capable of reasoning, having similar social and moral values, such as work ethic and valuing family, then I feel it is hard to acknowledge their suffering and the injustices that the Lacks family has suffered.

In the beginning of Henrietta Lacks, the author Skloot voices that she had tried her best to preserve the language, because if altered,  as highlighted by a family member, this would be taking away their life, their experiences, and themselves. Unfortunately, as can be observed through Skloot’s writing I feel despite this effort she still has to go through the extra effort to accomplish just that. For example describing the upbringing of Deborah lacks, Skloot juxtaposes her upbringing with that of Deborah. In essence, the safe, secure, pleasant upbringing versus an environment described as the most dangerous and poorest neighborhood. It’s as if the reader would not be able to understand the challenges Deborah faced without this contrast.

Reminding me of this action in which the suffering of a black person must be juxtaposed by a white person to be understood was when I watched the film A Time to Kill. This was a film entailing a father, who is black, being prosecuted for killing the men, who are white, that raped, beat, and urinated on his child. I remember how the lawyer had avoided the father from being found guilty by describing the story of what this little black girl had gone through, but in the end of doing so had told the jury to picture the girl as being white.

Though not directly, explaining the reasoning as to why the lawyer said to picture the girl suffering to be white and why black suffering is not understood is the author of Red, White, and Black, which is a book that analyzes the portrayal of whites, blacks, and Native Americans in cinema and its implications. The author, Frank Wilderson III writes, “The Middle Passage, “wiped out [his or her] metaphysics… his [or her] customs and sources on which they are based.” Jews went into Auschwitz and came out as Jews. Africans went into the ships and came out as Blacks. The former is a Human holocaust; the latter is a Human and a metaphysical holocaust… “The black has no ontological resistance in the eyes of the white man” or, more precisely, in the eyes of Humanity. He goes onto say referring to the film Antwone Fisher, “Before Antwone Fisher can deliver the slave into relational presence it must clear the hurdles… slave has no resistance in the eyes of the Other, which is not to say that the slave does not suffer but like a tree that falls in the woods where no person is present, Black suffering has no auditor”. Here the slave is the term referring to blacks in the film. In essence these quotes describe why society cannot understand, or comprehend, the sufferings of blacks who are seen as non-human.

Nevertheless, I feel as if Deborah Lacks, whether consciously or not, understands this.  Skloot described how Deborah Lacks began to speak in a confusing manic manner for forty-five minutes. I thought this because she talks about her great grandfather being a slave owner, the family being mixed, and a cousin being Puerto Rican. Every topic Deborah voiced are sometimes taught in black communities as being better than black such as one being mixed and therefore being a step closer to being understood because one is a step closer to being white; hence, why I also felt that this was a result of Deborah really wanting someone to listen to her story as well as her pain.

In conclusion, Henrietta Lacks was not able exercise agency over the smallest component of her body, I feel, is a result of ontological challenges that blacks along with other minorities face daily. Consequently, I feel the discussion of unethical practices in medicine and science is not only challenging, but can be misguided when not understanding what society defines as human and the rights they’re entitled to and those not seen as human and whether they have any rights at all.

Henrietta Lacks

Hello everyone my name is Maria Escamilla and I would like to start off by saying that this is the first time that I hear about Henrietta Lacks. Sometimes as a student we forget that there's a whole world beyond us, full of injustices.  A lot of us have busy lives and families and we forget that there's a whole world out there; we're stuck in our own bubble.  Reading a book like this reminds me that there is more beyond ones life.  There's many people who have lived, suffered and died  so that we can have all of what we have now.  If it wasn't for Henrieta Lacks we wouldn't have a lot of the vaccines or treatments that we have now.  Although she helped us out tremendously there was still a lot of injustices that were committed against her.  Being a poor black woman and being in a hospitals full of white doctors and nurses it was very easy to get taken advantage of due to her lack of knowledge.  But what still gets me is the fact that after complaining over and over again about her pain, the doctors ignored her.  She was never informed of the outcomes of her treatment or the repercussions. She was just a guinea pig the moment she stepped into the hospital.  This is the only reason a leading doctor in cervical cancer would be interested in treating patients at a place that provided care for poor colored people; knowing that a lot of people would not be able to pay.  Being a black woman she wasn't taken serious and she couldn't question the doctors orders. Sometimes a diagnosis wasn't even given out because doctors would assume that they might not understand anyway. Although the author mentions that there is no way of knowing weather Henrietta would have been treated differently if she had been white; I think that they would have given her a choice to try something else and would have  been under constant supervision of doctors if she had been a white woman. Another person that came to mind was Elsie. I saw a picture of little Elsie as I was flipping through the pages and underneath her portrait it read that she was committed to a hospital with a diagnosis of "idiocy."  I was sad to know that no one else went to go see Elsie after Henrietta died.  I also thought it was absurd that she was even diagnosed with "idiocy." 
 I feel as though the author did a good a job, so far, at telling the story of Henrietta lacks; but I think that if a black woman would have wrote the book it could have had more feeling. The author can feel sympathy but she can never truly capture the feeling of being discriminated against. The Irony is that people became rich of her cells but her family can't even afford to see a doctor; and that an African American woman was responsible for a huge part of history in science and for saving the lives of so many people that might have hated blacks. I wonder what she would say if she could say something, because she is very much alive.

"HeLa"

Maria Vazquez

Writing Workshop

19 July 2012

“HeLa”

Since the first chapter I read from this book “The Immortal Life of Henrietta Lacks” I realized that there were many important points that the book covers such as healthcare, racism, ethics, class, and biomedical research. One of the things that captured my attention and took me back to the past was healthcare. I remembered different situations that my family overcame which made me realized that even thought that we are in a new century healthcare still a big controversial issue. Rebecca Skloot states that “In early June, Henrietta told her doctors several times the she thought the cancer was spreading…but they found nothing wrong with her” (63). This specific quote remained me of a recent situation regarding my sister’s health when she was misdiagnosed and she was in the hospital for several weeks. This also made me think that Henrietta’s doctor was sure that he did not find anything wrong had to more with a class and race issue.

Class and race was another important point address in these events took place in the 1950’s when white and black people had separate facilities. African American were discriminated and treated very different. One example is when Henrietta visited John Hopkins hospital she needed to enter the hospital from a black’s only door even though the Hopkins was “a charity hospital for the sick and poor” (15). I was very disturbed about her radium treatment and how it was done because I did not have this knowledge. However; in the 1950’s doctors did not realize that exposure to radium had major consequences. People that were regularly exposed to radium can die of cancer. Henrietta received only two radium treatments. Then the doctors gave an X-ray treatment. Another thing that I found quite interesting and disturbing was the way the doctor wrote comments in Henrietta’s medical chart. “Told she could not have any more children. Says if she was told before, she would not have gone through with treatment” (47). Someone could find this comment very unethical and even rude and dishonest. Because she had the right to know the consequences of the treatment she was going to receive. The doctors made that decision for her which is very unethical. She had the right to decide his future.

This leads to a new point in the story ethics. Ethics is one of the most important points in this book, because neither Henrietta nor Henrietta’s family were ask for approval to remove tissue from her during her operation. Someone has to authorize the use of any part of their body for studies even if it is a tinny piece of tissue. The treatments and technologies that were performed to some patients would not be considered ethical according to today’s standard medical practices. This leads to Skloot who specially studies and examines the exploitation of patient’s rights.

On the other hand, thanks to the removal of the tissue from Henrietta’s cervix contribute to the first cells grown in vitro. These cells call HeLa helped to the development of vaccines such as the polio vaccine. These cells were also exposed to toxins, radiation and infections such experiments were not possible to be performed in a living human. Moreover, HeLa cells were used to study the “immune suppressor and cancer growth” (58). HeLa cells were and are a very important contribution to science and to biomedical research. The controversial point of this was the doctors that successfully grew HeLa cells were making a profit from it and Henrietta’s family did not receive any money from this. For many years they did not even know that the HeLa cells existed. Henrietta’s family had the right to know about her cells being part of different studies and they also deserve a compensation for this because they were not informed of the sample taken form Henrietta’s cervix. 

Summary of Second Book Chat: March 12, 2012

Were Henrietta’s race, class and gender responsible for the way she was treated?

Although John Hopkins was established to help the underserved in 1954 they had separate facilities for white and black people.

“I was pretty much horrified by the way the family was treated. African Americans were discriminated against, if you wanted to do some research you went to the African American population because many of them were less educated in general.” (Dr. Garcia)

What I found interesting was the testing of African American subjects over history.  I found it very disturbing, because in times of slavery they had a constant supply of corpses being sent to Northern medical universities. (Hansel Corsa)

To read about this family that wasn’t able to understand just basic biology terms and what was going on and the way they were treated, it really hurt me. (Tanisha Williams)

“Unethical” research and profit

Hansel noted that it was 3 Jewish doctors who refused to inject the patients with these cells and later resigned.  They knew about the famous 1947 Nuremberg Trials in Germany. Afterwards a ten-point code of ethics was established governing human experimentation worldwide, it stated, “Voluntary human consent was essential.” But since Southam claimed to not know about it and since the Nuremberg code was not a law, it did not have much bite. The NIH later implemented strict requirements to qualify for funding on all research on human subjects

“We have a have a duty to be responsible. It implies an ethical responsibility in terms of research, as well as in our professional realm, to help those who are uneducated and those who don’t have the information we have.” (Hansel Corsa)

There are some very unscrupulous scientists that are just going for the fame (the Nobel prize), who are willing to do anything and everything no matter what is in their way.  That is why it is so important for us scientist, if we see something that is not right, we say something. (Dr. Garcia)

“Do no harm, but give me your arm so that I can inject you with some cancer” (Daisy Johnson) in response to John Chester Southam, the virologist who injected Henrietta’s cancer cells on human subjects.

Of course what also amazed me is that legally once those cells were out of body you have no rights to them, which really kind of bothers me.  The trouble is the courts have substantiated that.  There’s no way that Henrietta’s family is going to ever get any compensation for this whatsoever. (Dr. Garcia)

Also, this book chat would not be possible if it were not for the insightful participation of the MORE program participants: Bertha Martin, Hansel Corsa, Daisy Johnson, Tanisha Williams, and Dr. Ray Garcia.

What is due in friday

what do we turn in on friday, and what time is it due?