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Informed consent: What if Henrietta Lacks checked No for research use?

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(@arianaburch)
Posts: 45
Eminent Member
 
Posted by: @alexandrabuga

Background: Henrietta Lacks was a woman whose cancer cells were the source of the HeLa cell line, the first immortalized cell line and one of the most important cell lines in medical research.  Lacks was the unknowing source of these cells from a tumor biopsied during treatment for cervical cancer at Johns Hopkins Hospital in 1951. These cells were then cultured by George Otto Gey who created the cell line known as HeLa, which is still used for medical research. No consent was obtained to culture her cells, nor were she or her family compensated for their extraction or use.

Today's clinical trials require patients to sign informed consent forms as Dr. Simon mentions and showed in lecture. Informed consents allow hospitals to use patient data/materials for internal research use if the patient elects to do so.  What if Henrietta lacks was in a clinical trial and checked "No" on her informed consent to not allow Johns Hopkins to use her samples for research use? Her samples created one of the most valuable cell lines ever created, and has helped advance medical research as we know it. Should patients have the option to  elect "No"  for research use or is that doing a disservice to the larger scientific community trying to find cures?

I believe that patients should have right to choose what can and cannot be done with their data/samples. I personally think it should be explained to the patient the benefits of providing their data/samples for research use, but that its ultimately up to them if they don't want to provide it for research use. I also believe the Lacks family should have received some type of royalty or compensation for the commercialization of the HeLa cells.

Wow this is a very great question that is the source of debates as far no consent was given by Henrietta Lacks and still today decades later her cells are still being used. I do believe that a patient has the right to elect No if they choose to do so. This is the patients right to not have this information used and then commercialized for gain even if it is believed that it could be used as a medical breakthrough. Informed consent should always be given by the patient. 

 
Posted : 24/09/2021 6:25 pm
(@troy-lovette)
Posts: 45
Eminent Member
 

If she would have checked “no” to research, then we would not have the cures for certain diseases today. This situation to me is a double edge sword. Where would we be if she did check the no box? Would we have vaccines that treat diseases today? Would nature find another way to present a cure for these diseases?

On the other hand, however, I am tired of the direct disrespect in the medical field towards African Americans. This situation is only one of the many stories that has happen to this population, which has led to the issues of trust and vaccines today. How does the government expect African Americans to trust them, when it has been NIH and other elite institutions that have contributed to harming us?

 
Posted : 25/09/2021 3:24 pm
(@ridmehta)
Posts: 79
Trusted Member
 

As the majority of individuals in this thread, I also echo that a patient's choice supersedes all scientific advancement. I'm sure many scientific advancements may have been missed by individuals checking the "no" box but we still stand as a society and the chances of someone else able to provide similar data are fairly high in today's age. However, I think its important to note that these patients not be coerced to change their opinion with bribes of high compensation or similar tactics as it takes advantage of those in lower socioeconomic backgrounds who may not have the option to turn down such an offer even if it means going against everything they believe in. While I do 100% believe the Lacks family should have received compensation, I believe future participants should not be bribed into the system and taken undue advantage of their situation. Compensation should be offered, but without any coercion whatsoever. 

 
Posted : 19/10/2021 8:12 pm
(@srp98)
Posts: 78
Trusted Member
 

The world definitely owes Henrietta Lacks and her family a great deal for all the contributions to the scientific community. Her cells were used during research when developing vaccines and are still continued to be used today. Back in the 50s, consent was something that was not entirely developed or understood. To my understanding, consent wasn't usually sought nor given. In 1990, a court ruled that someone's discarded cells and tissues are not their property, a notion that I completely disagree with. While they are discarded, it is up to the person to decide what happens to their tissues and cells. It is unacceptable for someone to decide how someone's body and their cells and tissues can be used. Body rights and regulation is something that has long been debated over the years and still is. While the HeLa cells served as a great foundation for the scientific community and continues to do so, it was completely inappropriate to use her cells without her or her family's knowledge. It was her choice to decide what would happen to her cells, not anyone else's. 

It should also be worth noting that I did not learn about Henrietta Lacks until my senior year of undergrad. HeLa cells are extremely important not just for the scientific community but for consent issues. Henrietta Lacks should be discussed earlier on as her contributions to the scientific community are profound. I'm curious to know when others learned about Henrietta Lacks and opinions on whether or not she should be discussed earlier on in undergrad. 

 
Posted : 24/10/2021 3:16 pm
(@kcrudupmsm-edu)
Posts: 19
Active Member
 

In speaking on the case of Henrietta Lacks I realize that back in those days it seemed to be common practice to take what was considered biological trash from patients without their consent. This was the time before HIPAA and other regulations involving patient care and confidentiality were put into affect. I would've loved to see financial compensation given to the family, but I believe too many companies and entities have benefited from the HeLa cell line that it is nearly impossible to pin down who would provide the family with this reparation. 

Moving forward I do believe that patients should be informed of the options they have and be able to opt out of any part of the procedure, including any donations to science. There are many concerns about privacy and confidentiality with it comes to these types of scientific donations. However, if the process and its potential benefits are thoroughly explained I think more people would consent to it.

 
Posted : 27/07/2022 10:39 pm
(@wmckennedymsm-edu)
Posts: 21
Eminent Member
 

Informed consent is very important within research. This ensures that the purpose of the research has been explained to the patient, along with informing them of what will be done to them, how the protocol works, what the risks are involved, and helping them to understand that participating in the study is completely voluntary. Signing the document means that the patient understands and agrees with all the terms. Patient should have the option to say no for research use. It’s ultimately their choice and if they don’t feel comfortable or want their data used in research they have that right. I agree with the fact that doctors should explain to patients the benefit of their data/samples being used to further research, however it is still up to the patient to make the final decision. The Lacks family should definitely be compensated appropriately for them using her tumor cells because that wasn’t ethical on the doctor’s part.

 
Posted : 27/07/2022 11:07 pm
(@mj386)
Posts: 78
Trusted Member
 

I believe that patients should be allowed to have informed consent when participating in clinical studies. While people's samples could be a huge factor in saving the lives of many, they, and their families, should be fully aware of what could happen and the usage of their samples. On top of that, the lack of local and national regulations on the usage of people's samples as well as their medical records being passed around tarnishes the lack of credibility of the study being conducted. The Lacks family seems to have been compensated but the fact that it took years for it to happen is disheartening to hear.

 
Posted : 30/10/2022 8:21 pm
(@jbarbee)
Posts: 78
Trusted Member
 

The HeLa cell line that was extracted from Henrietta Lacks became groundbreaking in the field of medical research. Without a doubt, the family should have been compensated and awarded royalties for such great contributions to the field. While I do believe subject consent is extremely important and should be honored and acknowledged, I also believe there should be limitations and exceptions to what may be consented for. Without consent, the medical field would be without the HeLa cell line and many other samples that have lead to discoveries. Often times subjects are not well educated on the extent of their consent. By thoroughly educating subjects on the discoveries that may come from a single sample, it's possible that this guidance will encourage subjects to consent for the use of their samples. By providing consent, the rare occurrences of possible new discoveries may lead to great breakthroughs in the medical field.

 
Posted : 30/10/2022 10:09 pm
(@sm2744)
Posts: 78
Trusted Member
 

I think that patients should always have the option to elect "no" for research use regardless of how impactful it may be for the larger scientific community. In a perfect world, civilians would help the scientific advance community given that it is not a large inconvenience to them. However, as seen with Henrietta, there are authority figures who would overstep any and all boundaries without giving proper recognition. I do believe that the Lacks family should have been compensated for the commercialization of the HeLa as 1. they allowed for multiple breakthroughs and 2. they were unethically obtained. Consent was not given and Henrietta was unaware that her DNA was quite literally just taken from her and essentially repurposed. To go and have a biopsy is one thing, but for that tissue sample to be cultured and commercialized instead of being discarded is a whole other thing. As people, I believe that we own our DNA information and if it were to be used for research, we decide on what terms. 

To go slightly down the rabbit hole, thinking of genetic test companies like 23andMe, it is a little frightening with the decreasing amount of privacy we now have. With something as important as your DNA, there absolutely needs to be protection for the individual whose it is. More importantly, their decision needs to be respected. 

 
Posted : 30/10/2022 10:22 pm
(@rbetz)
Posts: 27
Eminent Member
 

The story of Mrs. Lacks is a sad one.  She definitely was in my eyes taken advantage of.  I am glad we have found what have from her cells, and I am sure it has saved so many lives and created so many jobs, which is wonderful.  But, I feel her family should have got some kind of compensation.  I believe patents should be the final say when it comes to using their body for science.  If they say no then it means no.  If they say yes or don't say anything, then it means yes.

 
Posted : 28/03/2023 11:57 pm
(@rbetz)
Posts: 27
Eminent Member
 

The story of Mrs. Lacks is a sad one.  She definitely was in my eyes taken advantage of.  I am glad we have found what have from her cells, and I am sure it has saved so many lives and created so many jobs, which is wonderful.  But, I feel her family should have got some kind of compensation.  I believe patents should be the final say when it comes to using their body for science.  If they say no then it means no.  If they say yes or don't say anything, then it means yes.

 
Posted : 29/03/2023 12:02 am
(@rbetz)
Posts: 27
Eminent Member
 

The story of Mrs. Lacks is a sad one.  She definitely was in my eyes taken advantage of.  I am glad we have found what have from her cells, and I am sure it has saved so many lives and created so many jobs, which is wonderful.  But, I feel her family should have got some kind of compensation.  I believe patents should be the final say when it comes to using their body for science.  If they say no then it means no.  If they say yes or don't say anything, then it means yes.

 
Posted : 29/03/2023 12:02 am
(@kcbutlermsm-edu)
Posts: 27
Eminent Member
 

If Henrietta Lacks had checked "No" for research use of her cells, scientists would have still figured out a way to develop treatments for various diseases without her cells. There are dozens of treatments that were developed without her DNA, but her cells did make it easier for scientists to understand diseases and treatments. Not volunteering your body parts to research is not doing a disservice, but doctors and researchers need to thoroughly state what the patient's biopsy or various body parts will be used for before consenting. 

 
Posted : 29/03/2023 11:18 am
(@mbonds)
Posts: 24
Eminent Member
 

Henrietta Lacks was extremely influential to the medical community. HeLa cells have been crucial in understanding human diseases, particularly cancer, and mapping genes. The creation of the first polio vaccine, however, may have been HeLa cells' most important use. The polio virus was kept alive in human cells using HeLa cells as the growth medium. These cells were utilized by Jonas Salk in 1952 to test and mass-produce his polio vaccine. Furthermore, informed permission is a crucial ethical condition in research and indicates respect for individual autonomy. Participants are made aware during the consent procedure that research is different from clinical care in that it serves society as a whole rather than just the individual. Even if consent is not legally necessary in a particular situation, researchers should think about what details need to be shared to respect participant autonomy. Clinical trial participation is completely optional. You have the option to withdraw from or stop taking part in the clinical trial at any time. The informed consent form should be carefully read. Any facts that you don't comprehend or find perplexing should be questioned.

 
Posted : 29/03/2023 8:52 pm
(@vkeithley)
Posts: 25
Eminent Member
 

I believe all patients have the right to say no. No matter how rare their cells are, their blood type, etc., they should have the right to say no. But they also should not be asked multiple times or feel like they are endangering the well-being of others because they decide not to help “science”.  A patient should be able to choose what can and cannot be done with their own samples or data. As you mentioned, I also think her family should have and still should be compensated for the use of her cells. The fact that it took over 20 years for it to come to light that her cells were used without her consent is mind-blowing. Makes you wonder how many other times this has happened. I am happy that Federal law requires informed consent for that very reason. There are instances that people want to give consent, for whatever reasons they have and that’s their right. This is similar to some people wanting to be organ donors and some don’t even though they know it can have the potential to save many lives. The whole fact of the matter is, is CONSENT and having the ability to make your own choices about your body, even after you pass away. Who’s to say after she passed away that her family wouldn’t have given consent on her behalf?

 
Posted : 29/03/2023 8:55 pm
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