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

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Posts: 149
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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.

Posted : 24/10/2017 5:08 pm
Posts: 46
Eminent Member

Well as of today consent is most important thing in medical field. Whether we like it or not, approve it or not, it will be there and i feel it is definitely not going anywhere. I am very much behind signing consent forms from any patients or any donor as a matter of fact. It will be solely their and only their decision whether to say yes or not. And yes, I do agree that these patients or donors should be aware of the benefits they might be making to the society. It is like signing up for donating your eyes incase of accident on license. Everyone knows how beneficial it would be to donate your eyes if you die as you will have a power to give some unfortunate a vision. But yet some people say no and it is solely their decision. Talking about HeLa cells, certainly family should be compensated with something from the government.

Posted : 25/10/2017 5:57 pm
Posts: 77
Trusted Member

Consent, in terms of medical trials and treatment, is important because of the possibility of law suits and numerous liability reasons. In terms of possible clinical trials and each individual's choice to contribute to science, it would be beneficial to have a variety and collection of the different samples to further test and experiment. That would be ideal, however, there are always differing point of views in reality and this causes some people to become reluctant to donate to science. The good news is that it is not the end and there's always a way to generate these resources and in the end, time will be the biggest factor in creating the change that is needed.

Posted : 25/10/2017 10:31 pm
Posts: 79
Trusted Member

It is my personal opinion that when a person consents (signs) to having an operation/ procedure done which results in the removal of an organ/ bodily fluid, the patient waives any rights/ ownership they had over the now extracted substance. This rejected organ/ substance is now an independent body that cannot be claimed by the patient, rather becomes the property of the hospital/ doctor/ or university that may or may not want to further examine it. If any cell line or progress comes from the rejected body, I believe that it would be in good faith to tell the patient of origin that they directly helped advance the world of medicine. However, in no way should they be entitled to compensation. After all, they desired to be rid of the organ, so they forfeit all ownership and rights. This is part of the consent forms that all of us routinely sign in the doctor’s office without actually taking the time to ask for a printed hard copy to read.

In regards to the HeLa cells, I believe that Henrietta Lacks case helped set the current laws for the informed consent and implied consent laws. If she never signed a consent form, under today’s law, she and her family would be entitled to the proceeds made from her cells. However, due to the lack of concrete consent laws and the inequality of people of different races at that time in America history, her cell line was unfairly taken advantage of with no resultant repercussions.

Posted : 26/10/2017 8:03 am
Posts: 30
Eminent Member

I think when a person signs up for their body samples to be used for research purposes, they lose the right to have a say regarding what happens to their samples or how they are being used for research. But ethics in medical research is still a grey area. For example, culturing cells to identify and understand the patterns and functioning of a disease without tapping into the genomic framework of the donor's DNA might be acceptable. But genomic research without consent is a breach of privacy of not only of the donor but also of members of his/her family and would definitely require consent before their samples are used for research and publication of its results.

Commercialization of research samples in my view point is both good and bad but not the right way to promote research. It encourages more people to passively participate in medical research which broadens the scope for availability of a large 'variety' of data but it also opens doors for exploitation. In the case of Henrietta Lacks, it would be unfair to claim royalty or compensation because there's also invaluable amount of data that is extracted from clinical trials from scores of patients across the world whose samples have paved way for formulating drugs that can benefit generations to come. If everybody participating in clinical trials claimed the same compensation, that wouldn't be a practical way to deal with solving problems in our world. As the motto of healthcare and clinical trials always stands, one needs to participate in medical research with an intention of helping people and not for monetary purposes.

Posted : 26/10/2017 10:38 am
Posts: 38
Eminent Member

While obtaining a signature on an informed consent form is crucial, it is just but a step in the process of obtaining informed consent. As such, researchers should not put a lot of focus and emphasis on making the people sign the form. They should ensure that the people they are obtaining consent from understand the aim of the study and are willing to participate in it. Purpose, potential benefits and risks of their involvement, and the alternative options for such individuals should thus be made known to them. I agree with alexandrabuga that patients reserve the right to choose what can be done to their samples/data. If a patient decides not to sign a consent form, their decision should be respected even if not consenting would be a disservice to a community.
With regards to the HeLa cells, I am of the opinion that Lacks family should have received compensation. Under the current laws, failure to obtain informed consent is punishable, and if a patient chooses to check “No”, then that is it—no parts will be taken from their bodies for the purposes of research.

Posted : 27/10/2017 6:18 am
Posts: 85
Trusted Member

I do agree that the Lacks family should receive some sort of compensation or acknowledgment for the amount research that has been completed and is still being completed using the HeLa cells. It is ethically wrong for the medical research being done using these cells, since the consent of Henrietta Lacks was never given. Patients should definitely have the option to say no to having their data used for research. Although the data may be used anonymously, the patient has full authority to opt out if they feel uncomfortable with the idea. It is very beneficial for people to agree to allow research to use their data. With the more data involved in the research, it is more possible to make new discoveries and determine accurate solutions. Of course the research being done would be to benefit them and other patients like them. However, they should not feel pressured into letting research use their information.

Posted : 28/10/2017 8:41 am
Posts: 72
Trusted Member

While I understand the importance of Henrietta's harvested cells brought to advancement of research and benefits to society, I believe her cells were taken without her consent. Her rights were violated, but there were few laws in place at the time to protect her an other patients in the same situation from cells being harvested without consent and tissue research performed from the common good. HeLa cells brought to the forefront the responsibilities medical researchers owned society, transforming forever, the way researchers gather information and collect samples from human subjects, and more importantly how modern tissue research is regulated. I agree with previous posts that patients reserve the right to choose what information can be leveraged for research. If today's research environment Henrietta's family should have received compensation.

Posted : 28/10/2017 10:35 am
Posts: 58
Trusted Member

According to Johns Hopkins, in the 1950’s the practice of obtaining informed consent from cell or tissue donors was essentially unknown among academic medical centers. But the Nuremberg Code was in place by 1947 as ethical principles for human experimentation.

Tuskegee Syphilis Study blatantly ignored this code. It was a notorious research project involving hundreds of poor African-American men that took place from 1932 to 1972 in Macon County, Alabama. The men in the study had syphilis, a sexually transmitted infection, but didn’t know it. The men were told that the study was only going to last six months but in actuality it lasted 40 years. They were told they had “bad blood” and given placebos, even after the disease became treatable with penicillin in the 1940s. Even after funding for treatment was lost, the study was continued without informing the men they would never be treated. In the mid-1960s, a PHS venereal disease investigator raised concerns to his superiors that it was unethical. However, officials decided to continue the study, in order to track the participants until all had died, autopsies were performed and the project data could be analyzed.
Details of the study was published in the New York Times and the Washington Star in 1972. Then the experiment stopped and the remaining survivors were treated in 1973. After that, congress passed a National Act in 1974 creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research which lead to the publication of the "Belmont Report" in 1979. Today, the Belmont Report continues to be an essential reference for institutional review boards (IRBs) and remains the basis of human subject protection regulations.
Kim, Won Oak. “Institutional Review Board (IRB) and Ethical Issues in Clinical Research.” Korean Journal of Anesthesiology 62.1 (2012): 3–12. PMC. Web. 28 Oct. 2017.

Posted : 28/10/2017 11:20 am
Posts: 35
Eminent Member

In the past, consent was not used since medical regulation was still young and not widely enforced. In the case of Henrietta Lacks, the doctor did not give her the option to use her valuable cells for research, but as you said, that cell culture lead to mass scientific advancements in cancer research. Had Lacks checked "no" on a consent form when presented with on then it'll be the end right there. The doctor will not be able to use Lacks' cells for research and if it came to light that he/she did then he/she would be subject to penalties under law for unethical practices. I believe that the subject should have the choice to use his/her body in a clinical trial and that a consent form should have all the information the subject needs to know regarding the purpose of the trial and what is going to happen to their samples; in addition to any compensation they'll receive from the experiment. In the case of Lacks, her cells ended up becoming valuable to the advancement of clinical research, so I think it is also up to the investigator, via compensation or other "deals", to try and convince the subject to go forward with the study; to a certain extent. Being too pushy can be viewed as harassment and this may only deter the subject even further. In the same vein that the subject has the option to choose "no" I feel as though the investigator should have the same opportunity to convince the subject with ethical means (e.g. being completely honest with the purpose and procedure of the study without resorting to using misleading information); however, the final call should be from the subject and the investigator will simply have to move on and attempt to find other subjects should their desired subject say "no".

Posted : 29/10/2017 5:57 am
Posts: 68
Trusted Member

Every individual has the right to his or her own body, along with whatever may come from a study of it. In the case of Henrietta Lacks, she should have of course been given the right to refuse, as well as the right to fully consent, to the use of her cells in the name of science. If she had deferred decision-making rights to her family, they also should have had the option to decide yes or no. Had this been the case, it is possible that science would not have been at the point that it is now, but it would have been with clean conscience and ethic upstanding. It is a possibility that another individual would have had a similar set of cells with the same outcome, but more importantly with consent. Henrietta Lacks will live on, as she is immortalized through the research that came from her cells. She and her family deserved more than they were given in terms of money and recognition.

Posted : 29/10/2017 11:02 am
Posts: 40
Eminent Member

We all agree that consent is incredibly important. However, when it comes to being paid for research, I think it is essential to consider the money involved in it. To clarify, I believe that a university publishing research using government funding ought to face different standards for payment than a corporation that succeeds in creating a viable, marketed product using the same research samples. The university is using public funds for common good, and thus forcing the university to pay hurts the general public.

As far as Hela was concerned, however, the standards of consent at the time did not give her an opportunity to say no. We can't do anything about that, but we can ensure we meet those standards in the future. And if a modern Hela checked no, her consent would trump the general needs of others, in the same way, I cannot force someone to give me their spare kidney no matter how badly I want it.

Posted : 29/10/2017 1:04 pm
Posts: 61
Trusted Member

I believe that every individual has the right to know what is going to be done to them in any sort of clinical setting. I believe that the passage of knowledge to a patient and their understanding is absolutely critical in order to achieve a state of informed consent. But, I believe that when an individual decides to enroll in a clinical trial or experimental study, they are not allowed to participate without giving consent, so this will ultimately resolve any potential conflicts. In addition, as was mentioned above, in the process of administering treatment in which an organ or tissues is removed, consent is required by the medical/research team before it can be repurposed.

In the case of HeLa cells and Henrietta Lacks, informed consent was not a concept that existed in her time. Her case is part of the reason informed consent has been developed. If we explore the hypothetical in which she selected "no" for research use, I believe it is up to the physician and research team as a whole to convince her to allow for her samples to be used. In the case in which they are unable to get the consent, then there is no choice but to respect her wishes. The argument then comes down to the ethics of justice and the greater good. Does justice for one individual outweigh the need to provide justice for the many. This dives into a much larger discussion on ethics.

Posted : 29/10/2017 2:15 pm
Posts: 43
Eminent Member

In terms of the Henrietta Lacks case, I do believe that it was immoral for what they did, and even gave their family no compensation when they asked. However, since the rise of informed consent, I do believe that people should be explained the use of certain procedures that may help advance medicine. However, this may influence their answer to check yes for research use. Many times, a lot of the informed consent revolves around being misinformed. My first time getting a driver's license, my father told me that I should not be an organ donor, because he truly believed that if I was seriously injured in a car accident, the paramedics would not try to revive me and instead wait until my organs could be harvested. At the time, being so young, I believed him, but looking back, a lot of people just do not understand of what being "informed" is and they do not know what exactly consent is and how it works. If a patient is informed and still elects "no" it should be honored even if it could have saved many future lives. It is a person's body and they have a right to do whatever they want with it.

Posted : 29/10/2017 2:25 pm
Posts: 30
Eminent Member

I think that informed consent is an important aspect in a clinical trial or hospitals because this protects clinics/hospitals/laboratories/organizations from liabilities when things go awry. In the case of Henrietta Lacks, her cells were cultured and used for research without her consent. I think that Johns Hopkins should've done their due diligence in getting informed consent regarding the use of her cells that were extracted from her. This way they would've been more transparent in their intent to use the extracted cells. I think that getting treated in the hospital was consent to treat her but I think that using her cells, and cultured it, for research purposes is another thing. And, giving consent is solely on the patient/test subject's discretion and should be respected. To conclude, the researcher/doctors should also do their best in making a case for such instances because this can lead to breakthroughs that can save lives in the future.

Posted : 29/10/2017 3:36 pm
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