Friday, June 21, 2013

Week 4: Chapters 23-28


Answer the following discussion questions, citing specific details from the passage.


Chapter 23:  How could McKusick and his investigators have explained what they were doing in a way that made sense to the Lacks family?


Chapter 24:  How are ethical standards for research on humans today treated differently than they were in the 1970s?



Chapter 25:  Do you think that Johns Hopkins should be penalized or required to reimburse the Lacks family for using Henrietta Lacks' tissue samples to develop and distribute HeLa?


Chapter 26:  What impression of the Lacks family does Skloot create in this chapter?


Chapter 27:  What role do telomeres play in determining how many times a cell can divide?


Chapter 28:  Why did Johns Hopkins respond to Barbara Wyche's letter as it did?

15 comments:

  1. Kiaana Howard-Allied HealthJune 23, 2013 at 5:38 PM

    Chapter 23: How could McKusick and his investigators have explained what they were doing in a way that made sense to the Lacks family?

    Firstly, McKusick could have given Susan Hsu, one of his postdoctoral colleagues, more information on how to explain the reasons why McKusick wanted to research on the Lacks family. If Mckusick gave Hsu more info then, maybe David Lacks wouldn't have been confused. Another possible way the researchers could have given an explanation is if Hsu had have been more direct with Day, instead of using medical or technical terms with Day. This vague explanation is not the researchers’ entire fault, however. If Day wasn't under the stereotypical stigma that “all doctors know what they’re doing, just nod your head and don’t ask questions”; then maybe he could have asked Hsu more questions and go in detail (in laymen terms) on what the researchers actually wanted from the Lacks family.

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  2. Chapter 27:

    A telomere is described as a stand of DNA located at the end of every chromosome of a cell that decreases in length every time cells divide. This shortening of telomere correlates with the lifespan of a human meaning that as they get shorter, humans get older in age until death. In reference to cancer cells, there is a special enzyme called telomerase that rebuilds the telomere resulting in more division of cancer cells. The major role of telomeres are determining how long a person will live depending on the countless times a cell divides.

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  3. Chapter 24:First, I would like to say there is definitely a BIG difference between research involving humans in the 1970's and now. Researchers back then thought it would have been better for people to not know about what is going on with their blood and/or samples. They continued to use people for the purpose of their research without informed consent and then they massed produced them. The Lacks family was a perfect victim. They were told about why their blood samples were needed, but they couldn't fully grasp what the scientists were asking them. They had no idea what was really going, except for what they believed, and that was getting a "cancer" test done. Their blood was used in the human genome project and they didn't even know.Today, you have to get informed consent from patients and know that their samples BELONG to them and not the researchers who go t the samples. There were many laws enacted to protect their samples from being patented and also to keep them well informed about what was going on.

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  4. 25. No, I do not think that John Hopkins should be penalized or required to reimburse the Lacks family. Henrietta’s tissue samples were taken in a time where it was common practice for doctors to act without informing their patients or family. Doctors acted and thought in accordance with what they knew was “right” at the time. Through this practice, medical and scientific progress flourished. The medicine we have today is a direct product. If you say that Hopkins should be penalized for this, you might as well be saying that all of science be penalized and reimburse the human population (a hyperbole, but the point still holds). Furthermore, things have changed radically in how patients are treated. John Hopkins has recognized that what their doctors did was wrong, but it was consistent with the times. They shouldn’t be penalized or required to reimburse the Lacks family for following practices. However, John Hopkins should do more to honor Henrietta Lacks and her contributions to science. Everyone has benefitted from HeLa, even Hopkins. Because of that I think that as the facility that took the cells, without consent, Hopkins should honor the woman it came from. This is what Hopkins should be required to do.

    27. The amount of times a cell can divide before degradation is directly linked to its telomeres. Each a time a cell divides it has risk of losing vital information at its ends. Telomeres act as caps to stall the degradation and they stop chromosomes from fusing. During every cell division a portion of the telomere is shortened. This allows a cell to continuously divide without progressively losing genetic information. During cell division, a cell cannot replicate until the ends of its chromosomes. If the cells divided without telomeres these ends would be lost during the process. The longer the telomere, the more a cell can divide, grow, and live. In fact, science has shown that through elongation of telomeres the aging process can be stalled. Some have even gone to say that the secret to immortality lies in telomeres; that if we could somehow keep them from shortening the cell would continue to divide. However, this could also lead to cancer.

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  5. Chapter 25: Do you think that Johns Hopkins should be penalized or required to reimburse the Lacks family for using Henrietta Lacks' tissue samples to develop and distribute HeLa?

    I think they should reimburse the Lacks family for using Henrietta Lacks' tissue samples. Although the court ruled in Moore's case that cells used for testing and research is considered "waste", Henrietta's cells contributed greatly to medical research. I can see why the court would rule against it since doing so would "hinder research by restricting access to the necessary raw materials", but it's ironic how the Lacks family are struggling to make a living while their family member's cells are out there making millions of dollars.

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  6. Chapter 27: What role do telomeres play in determining how many times a cell can divide?

    Telomeres are regions of repetitive DNA located at the ends of chromosomes. Telomeres protect chromosome ends from sticking to one another and from deteriorating. Each time a cell divides, the telomere ends get shorter and shorter. When the telomeres are too short, the cell cannot divide any further and it senesces. This is what gives a cell a limit to how many times it can divide.

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  7. Every year there is something new with technology happening in the world. In today's world people can be sued and put into jail by giving someone HIV. Everyone has the right to be aware of any procedure that is about to happen to them and understand why and what it is. Back in the 1970s they barely even had paperwork on every patient to keep count of what the doctors did. Everything has to be recorded now or written, sometimes, even at a certain time. Henrietta's family knew nothing about them taking her cells and doing what they pleased. No one contacted them and they found out through the worse way possible other people and the media.

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  8. Chapter 25: Do you think that Johns Hopkins should be penalized or required to reimburse the Lacks family for using Henrietta Lacks' tissue samples to develop and distribute HeLa?

    In my opinion, John Hopkins should be required to reimburse the Lacks family for using Henrietta Lacks' tissue samples to develop and distribute HeLa. Although the doctors had no idea that when they collected the samples they would grow and be as successful as they were, they never informed the family or Henrietta of their genuine intentions with her tissue. Not only did they not inform her family but people outside the family made a profit off her tissue. While Henrietta's family was left struggling and couldn't afford health care, health care professionals and companies were turning a profit from HeLa cells. That is unfair to the family and most importantly Henrietta's memory.

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  9. Chapter 23: Perhaps they could have explained that like people who are kin to one another might share similar traits, like nose shape or eye color or height, the blood from Henrietta's kin could be compared to cells from Henrietta to see what parts look alike. Because, your blood can show how that you are kin to someone else's blood or cells.

    Chapter 24: Ethical standards in the 70's were not regulated by law. Any laws that had been passed were much more like rather loose suggestions. There was no federal oversight even when there was a law.

    At this time, medical ethics consist of both legal and moral law, and they are tightly bound to one another.
    All parties involved want to cover their assets and protect them with a suit of armor plated with consent forms.

    Chapter 25: No, I don't think that Johns Hopkins should be penalized. However, I do think that they should have more medical education outreach in the communities.
    They should take care of the medical needs of Henrietta's Spouse, children, grandghilren to however many this can cover.

    In addition, Invitrogen, the company that seems to have been profiting the most from the sales of HeLa, should fund scholarships for the next several generations of the Lacks family. Perhaps Henrietta's great grandchildren will be able to escape poverty and begin to understand

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  10. Chapter: 23. McKusick could have explained to his associate how to relay the message over to the Lacks family. In my internship we are taught that not all patients have a complete understanding of their diagnosis so you have to explain what's going on so that they gain clarity. It might have helped if they simplified what was being sad to a child's level for their understanding. Also, McKusick could have gotten a different person whose primary language was English to speak to the lacks family.

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  12. Chapter 24: How are ethical standards for research on humans today treated differently than they were in the 1970s?

    The standards for research on humans today are different. One big example is the 1996 Health Insurance Portability and Accountability Act (HIPAA) which states that publishing personal medical information is a violation. This can result in a fine of $250,000 and up to 10 years in prison. In the 1970s, scientist could just do research on people without informed consent and they could publish a person’s name with any of their genetic information. There were basically no effective protection laws for the patients and it was also worse for African-Americans. The Lacks family’s genetic markers, Tuskegee Syphilis study, and Henrietta Lacks’ cells are very good example of the violation many African Americans faced in hands of scientists and doctors. Today, people know their rights and it is more difficult for scientist to coax a person into becoming a research subject without proper explanation. Another law made to protect people is the “2008 Genetic Nondiscrimination Act, created to protect people from losing their health insurance or employment due to genetic discrimination.”

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  13. Chapter 27: What role do telomeres play in determining how many times a cell can divide?



    A telomere is a string of DNA at the end of each chromosome. This strand is shorted a little bit each time the cell divides. The telomere are shorten with each cell division until the cell dies. However in human cancer cells, such as HeLa, contain an enzyme called telomerase. This enzyme that rebuilds the telomere, which meant cells could keep regenerating there telomeres.

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  14. Chapter 23: How could McKusick and his investigators have explained what they were doing in a way that made sense to the Lacks family?
    It is extremely vital to always break down and explain information to patients, and McKusick and his investigators failed to do this. McKusick neglected the fact that the Lacks family did not understand what he was referring to. Not only did he have an accent, but also medical terms can be hard to understand, especially considering the time period. Additionally, he gave Deborah a textbook to read about genetics, but she was also unable to comprehend what it was saying. Breaking down the information and making sure the Lacks family efficiently understand what McKusick and his investigators were referring to would have been helpful and beneficial

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