SOME QUESTIONS TO CONSIDER
How private should
your genetic information be? Can scientific researchers and pharmaceutical
companies use your cells for the sake of scientific advancement? These are not
just hypothetical questions. For the descendants of Henrietta Lacks, and for
more and more patients and their families, these are pressing ethical questions
that need answers and clear policies...
1. Should researchers be required to get your consent to use your cells?
2. How are different types of cancer categorized?
3. Do you think Henrietta would have given explicit consent to have a tissue sample used in medical research if she had been asked? Do you think she would have understood what was being asked for her?
4. What do the Tuskegee Syphilis Study and the Mississippi Appendectomies suggest about the history of African Americans and medicine?
5. 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?
Place comments here! Looking forward to the discussion.
ReplyDeleteWhy were the men who were being experimented on by the Tuskegee Syphilis Study not informed of the discovery of a cure for such disease? To what extent do governments have to intervene in the release of medical records to the public?
ReplyDeleteShreya Velidi
ReplyDeleteQuote-The Geys were determined to grow the first immortal human cells: a continuously dividing line of cells all descended from one original sample, cells that would constantly replenish themselves and never die. (30)
Question-Think that you were in a situation just like Henerrita during the 1950’s,would you lend the doctors your cells for research without having any education of what is going to happen to them?If your answer is a yes then what if they get busy with their research and they don’t pay attention to you?If no,then why?
Manuel Linage Estella
ReplyDeleteObservation:
Henrietta Lacks’ cells (HeLa cells) have been widely used in research and thanks to them, medicine has advanced saving many lives. Therefore, the fact that Henrietta wasn’t told the truth and her cells were used has done a greater good in society. Still, the dilemma is that she wasn’t aware of what they were doing with her tissue and she wasn’t treated with respect and there were no ethics involved in her treatment. Henrietta was key for the development of medicine and even though nothing can be done regarding her treatment by the doctors or the fact that her cells were taken and used without her permission, nowadays, in a ‘modern’ society, her family cannot afford health insurance, even though they are descendants of a woman who has helped develop the field in many ways. In my opinion the fact that she wasn’t informed of the use of her cells is outrageous as it was in her own right, however I believe that her family not being rewarded in any way or giving them the respect that Henrietta should have had is worse. I believe that her family should be at least given free health care as if it weren’t for their antecesor, many advances in medicine would not have happened.
Question:
The fact that Henrietta Lacks was black was one of the main reasons she wasn’t treated ethically and her cells were taken without her knowledge. Do you think HeLa cells would exist if Henrietta Lacks had been treated as the standard white woman during the 1950s?
Quote
Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. (page 30)
Alessandra Response
DeleteResponse to Observation: I completely agree. The fact that Henrietta's family is suffering when she made such an important contribution to the medical world is horrible. However, I don't think that anything will change for those related to Henrietta. The medical world can thank her for contributing, even if she didn't consent to it, but that would be all they'd do. I doubt they'd ever try to help the Lacks family receive free healthcare. I mean, for one, it would be those doctors and nurses who would lose out, not receiving more money from the potential patients. Moreover, if the Lacks family had free health care, then they'll always have free health care, forever, and that is a huge loss for the hospital in the long run. The Lacks family wouldn't receive anything, just like the family of a person who donated their body to science wouldn't receive anything either.
Teresa Amann
ReplyDeleteObservation:
Cancer and cell research have reached many milestones in the scientific world and our knowledge on them has greatly improved if we look back on the last 50 to 100 years. One notorious key event in cell research was the discovery of HeLa cells (Henrietta Lacks cells) during the 1950's. HeLa cells were the first immortalized cell line and one of the most important cell lines in medical research. Her cells are still reproducing to this day! Thanks to Ms. Henrietta Lacks cells multiple studies have been conducted and she has saved many lives.
However, it is all not fun and dandy as back in the 1950's the United States was still very heavily segregated and racism against african americans and minorities in general was very present. Henrietta Lacks cells were taken without her consent, used and sold for research purposes. This has been the cause of many controversies lately…
Under the United States Constitution this is a clear invasion of privacy which is defined as “ an individual who unlawfully intrudes into another person’s private affairs, discloses his or her private information, publicizes him or her in a false light, or appropriates his or her name for personal gain.” It is safe to say that this situation clearly fits into this definition and therefore the hospital should have been prosecuted and charged as such. Many argue that even though she never gave consent her cells served for a greater good and this justifies the crime.
I personally believe that genetic information should be absolutely confidential and should remain private unless the owner gives permission to use or sell it. We are humans not guinea pigs and therefore should be treated like so. I do think that Ms. Henrietta Lacks would have given doctors permission to use her cells if they explained to her properly why they were so important and how useful they could be.
In conclusion, I believe the Henrietta Lacks case really reflects the situation of african americans in a segregated America and the injustices they faced on a daily basis. Even to this day we can still see her family being treated unfairly as they have never received any compensation for the robbery of her cells and they can not afford health insurance.
Question:
In your opinion how would have Henrietta Lacks treatment differed if she was white? Would she have been asked for consent? Or were all patients lied to because there was not enough information yet?
Quote:
“But first—though no one had told Henrietta that TeLinde was collecting sample or asked she wanted to be a donor—Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta's cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish.” (33)
Ines Escario Atucha
ReplyDeleteQuestion: Why were scientific research ethical requirements not followed when retrieving and using Henrietta’s cervical cancer cells?
Observation: HeLa cells have truly made a great contribution to medicine and the understanding of cancer cells. It is an undeniable fact that without Henrietta’s cells much of the information that we know today about cancer would have not been possible. This woman is a hero to many especially those who suffer from cancer today. Although she is one of a kind, at the time of her treatment she was greatly mistreated because of her skin color. Henrietta lived in Baltimore, Maryland during the 1950’s, which was a time of segregation in the country. Blacks still suffered racism and inequality. Due to this, the doctors that attended Henrietta did not follow the basic ethical requirements when treating her cancer. Nowadays, Hela cells are used all over the world. Yet, she never gave consent in order for her cervical cells to be used in research. As the book states, donating or contributing tissues implies consent on the part of patient or family. It is a basic ethical requirement that was not followed in her case.
Quote:
"I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we'd been working with all this time and sending all over the world, they came from a live woman." (page 91)
Question: Why were scientific research ethical requirements not followed when retrieving and using Henrietta’s cervical cancer cells?
ReplyDeleteObservation: HeLa cells have truly made a great contribution to medicine and the understanding of cancer cells. It is an undeniable fact that without Henrietta’s cells much of the information that we know today about cancer would have not been possible. This woman is a hero to many especially those who suffer from cancer today. Although she is one of a kind, at the time of her treatment she was not treated as one should be because of her skin color. Henrietta lived in Baltimore, Maryland during the 1950’s which was a time of segregation in the country. Blacks still suffered racism and inequality. Consequently, the doctors that attended her treatment broke their confidentiality and privacy with the patient (Henrietta).
Nowadays, Hela cells are used all over the world. Yet, she never gave consent in order for her cervical cells to be used in research. As the book states, donating or contributing tissues implies consent on the part of patient or family. It is a basic ethical requirement that were not followed in her case.
Fact:
"I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we'd been working with all this time and sending all over the world, they came from a live woman." (page 91)