Monday, December 19, 2011

A Very Queer Holiday To You!

'Tis the season, and there's nothing like some gay Christmas to make the season bright.  Our Christmas tree is up, and is eating Her living room.  We went to Ingebretsen's on Lake Street today, to get some final ornaments. 

Amid presents and hoping for snow (and then hoping not to have to drive in snow) and going about my business with working retail during the holidays, it's been very up-and-about.

I'm about to go and get the handbook for the Nursing pre-entrance exam, so I'm a giant ball of stress.


Wish me luck!  I'll write more later. :D

-Femme

Tuesday, December 13, 2011

Do Do That VooDoo That You Do So Well...

In The Immortal Life of Henrietta Lacks, Rebecca Skloot did extensive research to include Henrietta's family members' perspectives in the book.  One of the most interesting things about Henrietta's family is that each person has a slightly different opinion about the origins of Henrietta's cancer.  In her research for the book, Skloot first ventured into Clover, Virginia, in December of 1999 (77).  On this trip she met up with one of Henrietta's cousins, named Cootie, and it was his thoughts on the cause of Henrietta's cancer that really grabbed me:
"'You know, a lot of things, they man-made,' he told me, dropping his voice to a whisper.  'You know what I mean by man-made, don't you?'
I shook my head no.
'Voodoo,' he whispered.  'Some peoples is sayin Henrietta's sickness and them cells was man- or woman-made, others say it was doctor-made (Skloot 81, 82).'"  
After reading that passage, I figured, ok, in a time without a lot of information, it seems reasonable that an unexplained illness or death could be attributed to a voodoo curse; but a) that never really happens, and b) it's 2011, for chrissake!   Nope.  I was wrong. People use voodoo curses even today; here's a story that cam out a week ago.  It seems there's more interest in this subject than I'm yet familiar with.  


Since reading that passage and finding that article, I've been very interested in voodoo; it's never been a part of my life, since I grew up white and in the North, and in a very moderately-religious environment.
To put it in more visual context of culture difference:
My world:

Fig. 1: Photo of an unknown man shoveling snow in his driveway.
From the website propertyinvestinggenie.com.  Accessed
12 December, 2011.  Via Google.com Image search.




Her world:
Fig. 3: Photograph of a tobacco field on a plantation in the 
American South.  From the website wessyngton.com. Accessed 
13 December, 2011. Via Google.com Image search. 



In the American South, its popularity a direct result of the slave industry, a West African religious practice called Voodoo (or Vodun, or Vodoun) blends different tribes' spirit-worship traditions, and has eventually been incorporated into Creole culture; it is merged with Roman Catholicism, and even incorporates some Native American Indian traditions as well, reflecting the influence of the ethnically-diverse area where it is still practiced today (Alvarado).  Voodoo uses the power of intention, and invoking spirits to intercede on the petitioner's behalf, to give meaning and power to charms and talismans--one of the most commonly recognized is the gris-gris (said with the French pronunciation of the word: "gree-gree") bag, which is small enough to be worn around the neck or elsewhere on one's person as an amulet, and contains a special formula of ingredients which are given special meaning because of intention based on the wishes of the person invoking the magic (Alvarado, Voodoo Museum).  Voodoo also uses priests or priestesses as vessels through which spirits can speak during ceremonies--often, the priest will suffer physical pain while the spirit inhabits his or her body, and he or she will speak in that spirit's voice while possessed, giving orders and delivering prophecies ("Haitian Voodoo" video, qtd. in Alvarado).  Voodoo has been practiced in the New World since at least the time of Christopher Columbus, by slaves brought to Hispaniola from West Africa, and is especially famous in the American South--specifically in New Orleans, Louisiana (Alvarado).  Voodoo has been shown to have been practiced by African slaves, as far north as Maryland, though (Wilford).  Voodoo has certainly traveled far, and it has become a matter of a lot of interest as a part of American culture, because of its deep connection with African slaves' ancestors.  It is as legitimate a religious/spiritual tradition as any other in this country.


  Voodoo even has its own VIPs.  Papa Legba and Queen Marie LaVeau were my favorites to read about.  
A short video about Queen Marie LaVeau:




In Voodoo, people can manifest their ill wishes for individuals, or their property or relationships with others, by putting hexes on them (Emmanuel).  In fact, it's even considered fair to try to wrong people who have wronged you--like spirit-mediated karma (Emmanuel).  But Voodoo is also used very often for good things: to get money, and to find love, for example (Priestess Fiona).  And beyond the ceremonies themselves, it was more a way to keep their social connections intact, which was another positive outcome--as with all religions, a sense of congregation is vitally important to its followers (African American Registry).  In New Orleans in the 1800's, freemen of color and slaves given the day off would go to Mass in the mornings on Sundays, and then participate in Voodoo ceremonies in the afternoon in a part of the city called Congo Square, and they would perform rituals for whatever purpose they desired to seek help from the spirits ("Haunted New Orleans").  These ceremonies gave the Voodoos the opportunity to feel connected with their culture, and their ancestors (African American Registry).  Henrietta's cousin Cootie believed in Voodoo, possibly because of his sense of connection with the rural historic roots of the Lacks family in Clover, so his conjecture that Henrietta's cancer was "man-made" makes a lot more sense to me, after reading up on Voodoo.

Fig. 3: Map of the Treme Neighborhood of New Orleans,
where Congo Square (#8 on the map) is located. From
the website cbr.tulane.edu. Accessed 13 December 2011.
Via Google.com Image search.





Some images of Voodoo in America: 
Fig. 4: A photo of the inside of the Voodoo Temple in
New Orleans, Louisiana.  From the website 
sacred-destinations.com.  Accessed 13 December 2011.
Via Google.com Image search.

Fig. 5: Photo of Voodoo and Yoruba priestess Ava Kay 
Jones.  From the website Hauntedamericatours.com
Accessed 13 Dec. 2011. Via Google.com Image Search.

Fig. 6: Photo of a voodoo doll made in New
Orleans.  From the website Patrishka.wordpress.com.
Accessed 13 December 2011. Via Google.com
Image search.

Fig. 7: Photo of a gris-gris bag, the 
charm most commonly recognized in
Voodoo.  From the website 
magickworkshop.wordpress.com.
Accessed 13 December 2011.
Via Google.com Image search.

Some Links For Further Voodoo Information:

Learn More about Voodoo:
Voodoo Among World's Religions
What Do Voodoos Believe?

Important People In Voodoo:
Voodoo Queens And Kings, Past and Present
"Dr." John Montenet


Works Cited:

African American Registry. "Congo Square, the Soul of New Orleans." Aaregistry.org, n.d. Web. 13 Dec. 2011.

Alvarado, Denise. "History of New Orleans Voodoo." Mysticvoodoo.com, copyright 2008-2010. Web. 12 Dec. 2011.

Emmanuel, Houngan. "Voodoo curses, Voodoo hexes, and Voodoo fixes." Realvoodoos.com, copyright 2008-2009. Web. 13 Dec. 2011.

National Geographic. "Haitian Voodoo." Embedded in "History of New Orleans Voodoo."  Mysticvoodoo.com, copyright 2008-2010. Web. 12 Dec. 2011.

New OrleansNet LLC. "Haunted  New Orleans Voodoo: A Brief History of Voodoo." Nola.com, copyright 2008. Web. 13 Dec. 2011.

Priestess Fiona. Haitianvoodoospells.com, copyright 2007-2011.  Web. 13 Dec. 2011.

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Broadway Paperbacks, 2010. Print.

Voodoo Museum. "Gris-Gris." n.d. Web. 12 Dec. 2011.

Wilford, John Noble. "Under Maryland Street, Ties to African Past." New York Times 21 Oct. 2008: 1. Abstract. Academic Search Premier.Web. 13 Dec. 2011.

Sunday, December 11, 2011

Final Guided Reading Questions


1. Carefully reread the speech Deborah gave at Morehouse College, paying particular attention to her repetition of the word “understanding.” Why do you think understanding HeLa was so important to Deborah? What obstacles does she mention as impeding her understanding?


On pages 220 and 221, Deborah seems most regretful about the fact that she doesn’t know much about her mother. She was baffled, like the rest of the Lacks family, by the explanation doctors gave, that Henrietta’s cells were still alive, while Henrietta had died, and that they were able to do all sorts of things with and to the cells. Deborah and the rest of the Lacks children didn’t even know what cells were when this story began, and they didn’t know who to trust, or what information was true and what was made up about their mother’s life, death, and immortality. They used their understanding of the world to create their views of their mother, and Deborah knew there was more to the story. Her use of the word “understanding” is primarily based on the fact that her entire relationship with her mother has been one of seeking information, and all kinds of different characters and events shrouded in mystery. She cites the fact that she couldn’t hear in school as the reason why she might ‘mispronounce’ some things. She wondered aloud what if would have been like to have her mother around in her life, and she expressed her displeasure with the fact that nothing was explained to her, even though her mother fell victim to aggressive cancer under their care. I think understanding HeLa was the closest Deborah would be able to get to knowing her mother in this world, and I think that since Henrietta died while she was such a young child, Deborah projected her longing for her mother onto the cells, which were still alive and tangible artifacts of her mother—evidence definitive that she had existed, and containing DNA that was connected to her own.



4. How did Skloot finance the research for her book? What did she promise to do for the Lacks family if and when the book was published?


Skloot, at Deborah’s demands to know who was paying her to write the book, disclosed that she was paying for her research and the time and resources for getting information with credit cards and student loans. She promised Deborah, instead of paying her for her information for the book, that she would set up a fund for a scholarship for Henrietta’s descendants to pursue higher education. Deborah was pleased by this; “Education is everything,” she replied to Skloot’s promise (p. 251).



6. Does the title of this chapter evoke an emotional response from you? Why do you think Skloot chose this title? Compare the connotations of the name “Crownsville” with the name “Hospital for the Negro Insane.” What do you think the directors were trying to achieve when they renamed the facility? Why was Skloot surprised by the appearance of Crownsville? What do you think she expected to find? Skloot carefully describes the photograph of Elsie. What specific things can you infer about Elsie’s treatment based on the description of the photograph? How does Deborah demonstrate that she is in control when her right to view Elsie’s records is questioned?


“Negro” and “insane” are definitely words that, for a person living in this time, illicit a response that is deeply emotional—even though they probably weren’t in the time that they were used. I think the word “negro” instead of “African American” is the most jarring, to someone who grew up in a climate of highly sensitive political correctness. I was reared in a household which was very aware and deliberately sensitive to that—maybe because we’re white and upper-middle class, we were especially sensitive out of some kind of guilt about the fact that we are exactly what society was built to endorse and support. “Insane” is another word that evokes strong emotions. When I read this chapter, I thought of the enlightenment-era hospitals for people who were considered to be crazy, like in the opening scenes and cutaways in the movie “Amadeus,” where the priest is visiting Salieri to give him his last confession and last rites, with all the people wailing and gnashing their teeth and flailing their limbs around the grounds. I think Skloot chose this title because of that emotional response—she clearly had an objective to make this chapter conjure up that visceral reaction of disgust and horror at the treatment of the patients at Crownsville by using verbage directly from the era, and now specifically designed by social paradigm shifts to be offensive, even, as people read it. Doctors were probably trying to change the impression people had of the facility from one of cruel treatment and hopelessness to something more benign by renaming it. They also made the grounds more beautiful and made the hospital itself more welcoming and less terrifying. Going even from the name “Hospital for the Negro Insane” to “Crownsville” makes a drastic change, but I think Skloot wasn’t expecting the grounds to be so altered from the bleak, cold, sterile and hopeless atmosphere that had been there when Elsie Lacks was admitted. I think she was expecting what I was expecting: a few nurses and doctors here and there, but without any sort of warmth in their interaction with patients, a bunch of imposing-looking walls and burly orderlies to restrain out-of-control attacks from crazy people. But when she arrived she saw a place where it looked like a person could sit outside underneath spreading trees and lush greenery and “sip mint juleps (p. 269).” Elsie is crying in the photo—the staff were obviously not gentle with her, and she’s frightened to be where she is, not knowing who’s touching her or why she’s there, and her head is being held in an unnatural position by a pair of white hands. The person is obviously a woman, with well-manicured hands. She clearly has time to care for herself, but she apparently has no spare thoughts for the patients she cares for. She might have been even beaten at the Hospital for the Negro Insane, because her face shows signs of trauma that are consistent with violence—swollen-shut eyes, lips also swollen beyond normal proportion, bruising around her face. Obviously, her life was inhuman and she had no capability to advocate for herself, so she was treated just as whoever was attending her felt like treating her. Deborah asserts her control over the situation when the unnamed person storms in and demands an explanation by staring daggers at him, wrapping her fingers more tightly around her cane, and silently, seethingly producing documents that proved her relationship to Elsie. She didn’t explode at him, but she made it clear that she was a force to be reckoned with anyway.



11. What physical ailments did Deborah suffer from as a result of the excitement and stress of seeing her mother’s cells for the first time, and learning about Elsie? Why did Deborah decide to go back to school? Why was Deborah unable to attend the National Foundation for Cancer Research’s Henrietta Lacks conference? Explain how Davon’s heroic actions saved Deborah’s life. What obstacle kept Deborah from realizing her dream of returning to school?


Deborah, who had always had underlying diabetic tendencies, had such high blood pressure and blood sugar that she was inches away from a major medical emergency after discovering more about Elsie and seeing the cells. She had had hives before, and was chugging Benadryl as she drove to Clover, but had ignored her body’s stress response in her need to know more about her mother. Deborah decided to go back to school because she wanted to learn more about the scientific benefits her mother’s cells had yielded, and to work with them to help people—she seemed to feel that she could be an extension of the good her mother’s cells had done in the world by becoming a dental assistant or a radiation technologist (p. 298). She wanted to know more about cancer, so she was more interested in the radiation technologist training, because it would help her understand her mother better (p. 298). When the September 11, 2001 attacks happened, the conference for the National Foundation for Cancer Research was cancelled, and Deborah was too terrified by it to fly anyway. Davon saved Deborah by keeping her awake, not letting her sink into unconsciousness as Pullum drove her to the fire station, where paramedics were able to attend her. He slapped her face and shouted at her, keeping her from closing her eyes beyond blinking. Because of her health, and more specifically because she didn’t have the money, Deborah wasn’t able to continue with her dream of educating herself; she barely had enough money to live on, much less buy books and pay tuition for classes. So, instead, she focused on getting the younger generations to go to school (p. 302).

The End, But Not Really The End

"On May 21, 2009, after leaving many messages, I called again. Her voice-mail box was full. So I dialed Sonny's number to say something I'd said to him many times over the years: 'Will you tell your sister to stop messing around and return my calls? I really need to talk to her. Our time is running out.' When he answered the phone I said, 'Hey Sonny, it's Rebecca,' and for a moment the line went silent.
'I've been trying to find your phone number,' he said, and my eyes filled with tears. I knew there was only one reason Sonny would need to call me (p. 307)."

I loved this passage because it shows the quiet sense of what had happened that spread through Skloot as she learned that Deborah had died, and how sad and devastated both Skloot and the family were—they realized how much Deborah had meant to them; for Skloot, it was the professional/personal love/hate relationship that they had developed, and for the family it was the fact that Deborah had kept them all together, more or less, and had been the mouthpiece for them to the public. I think the style shows the starkness of her feelings—there isn’t a word wasted, and there isn’t an extraneous piece of information—Skloot only tells what happened. It’s glaringly obvious what she was feeling as she had this conversation with Sonny. We’ve all had that moment of our hearts dropping down somewhere close to our knees as we hear something, and then there’s not the potential for going back and saying what we really felt. I felt that way with Grandpa Ted when he passed—I had told him I loved him, but there was so much more I wanted to ask him, to learn from him, and so much more fun I wanted to have with him, and when he died, it was all cut off cold turkey. No chance to get one last question or hug in edgewise. I felt like I was there. I could hear the silence around the room, and on the phone line, and I could feel the weight of it before Sonny got out that he was looking to get in touch with Skloot.
The questions that this passage raises to me are about how Skloot chose to write it—did she make conscious decisions to keep it stark and quiet? Or is this just her memory of the situation? Does it really describe what was going on around her? What if there was ambient noise that her mind blocked out, I wonder? And why did Sonny say he was looking for her number? I’m sure they all had it; I wonder if he was just trying to be polite. I wonder if he was ever going to tell her or find a way to tell her if she hadn’t called. I wonder how the rest of the family felt about Skloot going to the funeral, or about being close to them and their turf at all. How did Rebecca feel about the strained nature of her relationship with Deborah the whole time they knew each other? Deborah was always just this side of a total meltdown, and Rebecca often had to deal with her erratic behavior and even defend her own person. Did Skloot decide to forget the fact that Deborah had thrown her up against a wall and only remember the moments of closeness and clarity? I feel like there was a level of sweeping under the rug that Skloot did with those moments, and I don’t know if I would be able to do that. But nonetheless, she is genuinely saddened by Deborah’s death. Would they have continued their relationship once the book was published if Deborah had lived longer, then?


"The younger Deborah said she was glad that when she died, she wouldn't have to tell her mother the story of everything that happened with the cells and the family, because Henrietta already knew. 'She's been watching us and seeing all that's going on down here,' Deborah said. 'She's waiting patiently for us. There won't be any words, just a lot of hugging and crying. I really believe she's up in heaven, and she's doin okay, because she did enough suffering for everyone down here. On the other side, they say there's no pain or suffering....I want to be there with my mother.'
Sitting between me and Davon on the bed, Deborah nodded over at her younger self on the screen and said, 'Heaven looks just like Clover, Virginia. My mother and I always loved it down there more than anywhere else in the world.'
She stroked Davon's hair. 'I don't know how I'm going to go,' she said. 'I just hope it's nice and calm. But I tell you one thing, I don't want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that's just sad.' Then she smiled. 'But maybe I'll come back as some HeLa cells like my mother, that way we can do good together out here in the world.' She paused and nodded again. 'I think I'd like that (p. 309, 310).'"

I think moments like this, with short sentences and plain language, really portray Deborah’s sense of justice and fairness and belonging to the world best. I think Deborah was a plainspoken woman who by some chance on top of a lot of circumstance had not been educated as well as other people might have been, and didn’t understand what her mother’s cells were doing for the world, or even what they were, and she felt as though those cells were still a part of her mother’s consciousness. She knew her mother was a giving, sweet, and caring person who would have wanted to be useful to the world, so she was able to reconcile the way her mother’s cells had been used to benefit medicine and science with her mother’s character, but she didn’t understand that her mother hadn’t been able to feel the pain of being injected with pathogens, or being manipulated or being shot into space. So, she felt that her mother had sacrificed herself even more than she really had, and I think it speaks to Deborah’s sense of connectedness to people that she was ok with that, and even wanted to come back as some HeLa cells after she died, to give herself for the benefit of other people as well. I think, from Deborah’s point of view, that Henrietta was still a part of her cells in culture, and that her intent and her consciousness as a part of those cells was what was her contribution. And I think Deborah wanted to be a part of it. I also see from the way Skloot formed this passage that there were moments of calm for Deborah, where she had clarity and introspection, and I think this passage leaves us with that Deborah, the Deborah she might have been more of the time if her anxiety and her other physical conditions had been cared for better—all of which is tied back into how the family should be recognized for Henrietta’s famous cell line as well. I like this Deborah. I like her guilelessness. I like how her intent toward humanity is so selfless. I think this was the perfect scene to end with, in the book.
Questions that this passage raised for me include mostly how this would have been different if the family had been better educated, and had understood how cells work and how research is done with them better. I thought this throughout the entire book, and I think this now: the fact that the Lackses were so upset by all this was a direct function of how little they knew about science. If they had been given a proper education in the liberal arts and sciences as they were growing up, their suspicion and outright mistrust and hatred for the things they don’t understand would be prevented. I wonder, how could they even listen to people talking about HeLa cells and really get it if theyweren’t given the raw materials with which to understand? What can we do to make sure that there is an adequate length and depth of education for children from poor families who would most likely have to leave school unfairly early to begin to work to support their families? How can we change that? Skloot founded the Henrietta Lacks foundation, but what about people without famous relatives? What about their understanding of the world? What can we do to keep kids in school and learning until they at least complete high school level course work? It would give them a better chance to understand their world, a better chance at higher education and more satisfying work, it would give them a broader experience to inform their political opinions, and it would give them the opportunity to become inspired to make changes in their home environments that would benefit their communities. What if Deborah hadn’t been religious? Would HeLa have meant so much to her understanding of her mother, then? What if Henrietta had refused to give her cells for research, if the doctors at Hopkins had asked? What if the family had closed ranks against Skloot and not told her anything? I think that’s the biggest question. Where would the world be without this story told when there were still relatives who remembered Henrietta and while her children were all alive to have their say (except for Elsie, and what would have happened if Lurz hadn’t been there to speak for her?)? Would Henrietta have been lost entirely to historic mystery?

Sunday, December 4, 2011

HeLa Bombs Away!

1. How did the scientific community respond to Gartler’s theory about HeLa contamination?


I think Skloot puts it best: "Gartler's findings did not go over well (p.153)." Scientists resisted this finding at first, then gradually accpeted that their cell culture lines were contaminated, and realized that they had spent countless research hours and dollars on what were essentially HeLa hybrids that they thought were unique cultures. According to Robert Stevenson, as quoted by Skloot, the devastation that the scientific community felt regarding this revelation was akin to the mortification and embarrassmen of "drop[ping] a turd in the punch bowl (p.154)." The fact that there were genetic markers which linked the HeLa strain inextricably to the cultures which were believed to be pure and unique made scientists realize, however that they needed to be more careful about contamination of their samples, and I think the HeLa bomb was ultimately an advance for the scientific community because of that--though maybe it wasn't the advance they were hoping for.




4. What type of cancer was George Gey diagnosed with? What specific request did Gey make prior to going into surgery? Why didn’t his surgeons honor his request? Did Gey benefit or profit in any way from his participation in the research studies?


Gey was diagnosed with pancreatic cancer in 1970, after suffering from enexplicable and profound exhaustion while fishing on the Potomac with some colleagues from Hopkins (p. 170). His final major request was that samples be taken from his tumor, and he gave his researchers specific instructions to get those samples--telling them "work all day and all night if you have to (p.171)." The surgeons working on him decided not to cut into the tumors they found in multiple places in his peritoneal cavity because they were afraid it would be fatal if they were to make an error and cut into an organ (p. 171). Gey did not benefit or profit from the research--he died without making huge amounts of money, and he did not demand any kind of compensation for cell samples when he sent them to colleagues--he just wanted them to be able to do research based on his own findings, and to benefit the medical and scientific research communities in a knowledge capacity--it doesn't seem like he was ever motivated by money.




9. Why did Deborah choose not to request a copy of her mother’s medical records? In spite of her deliberate decision to not read her mother’s medical records, Deborah Lacks still learned extremely upsetting details about her mother’s illness and autopsy. Describe how Deborah found out about her mother’s painful death. How did Deborah react after reading about her mother’s death?


Deborah did not request her mother's medical records because she was afraid to discover something that would upset her, or that she didn't want to know in the first place (p. 209). Finally, she read a portion of a book by Michael Gold, detailing the way Henrietta had died, and her autopsy results, published publicly without permission from the family or from Henrietta herself (p. 209). After she discovered how her mother had died, and how her organs had looked like they were covered in little pearls of tumor, she "fell apart (p. 210)." She cried for days, she grew anxious about the excruciating pain her mother must have suffered while she was in the final stages of her life, and she was swept into anger at the hospital and her family, for divulging those secrets of how awful her mother's condition was toward the end (p.210).





12. Explain the Hayflick limit. Why are HeLa cells able to live beyond the Hayflick limit?


The Hayflick Limit is a phenomenon of biological cell division, discovered by Leonard Hayflick, and published in a 1961 paper which stated that normal cells have essentially 50 duplications before their telomeres were eventually whittled down to nothing, stopping further ability to replicate and thus ending the cell line (p. 216, 217). According to Skloot, a discovery made by Yale scientists shows that cancer cells have "an enzyme called telomerase that rebuilds their telomeres (p. 217)." This means that the telomeres in cancerous cells do not get whittled down, and stand a better chance of being able to replicate in culture ad infinitum because their telomeres can be regenerated (p. 217).

Week 15 Journal: The Beginning of The End

"When Deborah got to her doctor's office, her blood pressure and blood sugar were so high, her doctor was amazed she hadn't had a stroke or heart attack while we were in CLover. With levels like hers, he said, she could still have one any minute. Suddenly her strange behavior on the trip seemed less strange. Confusion, panic, and incoherent speech are all symptoms of extremely high blood pressure and blood sugar, which can lead to heart attack and stroke. So is redness and swelling, which would explain why her red welts didn't go away, despite all the Benadryl she drank. (p. 297)"

I chose this passage because it's a piece of medical information about Deborah, showing how the research about her mother's cells had taken such an awful toll on her, stressing her out to the point where she was a hair's breadth from a major medical catastrophe. All this just to know more about her mother--in the scene before this, her cousin Gary is praying and singing and preaching over her to help her release the "burden" of the stress it was causing her to find out more about her mother. It shows how much she loved her mother, how concerned for her mother's posthumous wellbeing and dignity she was, and how ignorance of medicine is dangerous for people--it gives them room to make up wild and frightening stories about what might be happening behind the scrubs and the white lab coats--making it obvious to me that informed consent and transparency in medicine are absolutely necessary to the healthcare process, just as much as the actual treatments, preventive advice, and procedures performed might be.
The questions that this passage raised for me are: How would this have been different with an upper-middle-class white family in the North who were not particularly religious? Would it have made a difference if Deborah had been given more information and had not experienced the dismissive, mystery-perpetuating treatment she had been given by the medical professionals she had encountered in her search for information about her mother, and in her own visits to her doctor. I also want to know what would have happened if Deborah was being treated for her anxiety during the time when she and Rebecca were doing their research--would she have learned more? Would her behavior have been less erratic, even though her blood pressure and blood sugar were so far out of the normal range?


"Every decade has had its landmark moments in HeLa research, and the connection between HPV and cervical cancer was only one of several in the eighties. At the beginning of the AIDS epidemic, a group of researchers--including a molecular biologist named Richard Axel, who would go on to win a Nobel Prize--infected HeLa cells with HIV. Normally, HIV can infect only blood cells, but Axel had inserted a specific DNA sequence from a blood cell into HeLa cells, which made it possible for HIV to infect them as well. This allowed scientists to determine what was required for HIV to infect a cell--an important step toward understanding the virus, and potentially stopping it. (p. 214)"

When I read this passage, I immediately felt like there was a huge amount of good that has been done by the discoveries HeLa cells have facilitated. I think what drew me to it most, though, was the idea that there was the possibility that all of this research could have *not* ben done; it was like seeing a world without the advances in medical knowledge in my mind's eye. My stomach sank a little after reading it. If my thoughts on informed consent had been law (i.e., that all people should know exactly what's being done to and for them at all times, and be able to refuse treatment or refuse to give tissue samples if they want to) at the time the cells were taken, Henrietta Lacks could have refused to have cells harvested from her tumor, and the world would be significantly different now.
My questions regarding this passage are: What if Henrietta Lacks had refused to donate her cells for research? Claire mentioned this in an earlier discussion board this week, and it's something I've been thinking a lot about too--specifically after having read this passage in the book. Also: what if Day had been less prone to cheating on his wife, and had not brought home the HPV strain that infected Henrietta and eventually led to her cancer and her tumor and her death? What would medicine have done without sacrificing one innocent life for the good of millions of others? Is that really the balance that has been struck? And does that mean that each of us has an equal probability of being called on by forces outside our control or understanding to sacrifice ourselves for the benefit of humanity at large??