I agree with rd389 and Ibraheem shaikh with regards to respecting a person's consent. Nowadays, IBR makes it a must for potential participants to be briefed with full information of the outcome and benefits form the test. In the case of compensation, it is generally nominal but certainly, there is a room for improvement. I believe that we should create a distinction between compensation made by hospitals and labs working with corporate firms. Also, longterm benefits from the conducted test must also be shared with participants but, this is not generally practiced and are always hidden from them.

Patients should have right to decide what they want to do with their data and samples but in these cases there are some legal complications whether a person have any right over samples or tissues that were removed from his body and developed by the doctor? if so does patient have control how the cells should be used? Human cell lines that are created by removing a tissue from patient body and then cultured it outside for a particular period of time. There are certain laws that prevent the right of patient over their own samples. Nowadays there are ethical guidelines required an informed consent from a patient before going to surgery if a tissue or cell is removed what should be done with it. Doctors should pay compensation to Lack's family. Donor should have right over profit derived from his samples. There are large number of treaties, laws that guide ethical collection of these tissues and samples.

The necessity for informed consent in clinical trials is purely a legal issue. Before the days of informed consent, it was morally enough to ask "can I treat you"? The same morals still apply today. In many informed consent forms, there includes a section about further research using data gathered from you. Really, that is the whole point of the experiment. To gather data for use in current and future study. If a person is seeking to be a clinical trial patient and checks "no", well then they are dissolving the purpose of the trial and they will be let go. In the case of Henrietta, she was not in a clinical trial, she was just a patient. In this case, it is not informed consent that is the question it is hospital policy. Legally, she should have been given the chance to say no. Morally, she should have said yes anyway. The arguments around the future research aspect of samples collected with informed consent are centered on the hospital ethics. But ethical considerations should be applied to the patient's side as well. If a doctor takes blood in treatment, and that blood could help find a cure one day at no extra cost to you, it is morally and ethically right for you to let it happen. There are aspects such as this that are put into informed consent for legal purposes ie: patient sueing doctor/investigator. In a legal point of view, informed consent must be thorough. However, in an ethical point of view, once a sample is willfully given the doctor should be able to do what they want with it in order to find a cure/vaccine/solution.

I believe that patients should have the option to decide what happens to their samples when in a clinical trial. The patient should be thoroughly informed on what happens to their samples, what’s going on, and how it could help many other sick patients. Many patients would decide to help those in need but it should depend on the patient since it is their samples after all. There will be more patients willing to consent to using their samples for research that the amount of people saying no for consent would not do a disservice to the larger scientific community and trying to find cures. I also do believe that even though Henrietta Lacks did not have the option to get informed consent, she did have a huge impact in medical research and should have been compensated for this. Her samples helped many other patients and is very well known that the cell line was named after her. This is just like becoming an organ donor. It is your own decision whether you want to donate any part of your body/organ for other people so you should be able to decide for everything else. There is also consent on a patient getting treated by EMT’s and doctors. If they refuse to go to the hospital or want to be treated by someone, they are not required too. Forcing a patient do something against their will is unethical and consent should be given before doing research on a patient's sample.

I believe obtaining informed consent in any medical setting or research setting is very important and necessary. Doctors and hospitals are meant to help and assist patients not secretly be using these regular patients who come to them for their own research. Informed consent is important because it allows an individual to have control over their own body and their own choices. It informs them of what the research will consist of, if they will get paid, how long it will last and what are some possible effects on participating in the experiment. Some research can have very severe adverse effects on the patients participating in it, it may be the only option, but at least they are made aware of the dangers that can come and allow them to make their own decisions. Consent also protects the company's that are running the research experiment and also controls these companies in their decision making. If a company knows they have to receive informed consent from volunteers to be in the study they will start to think about making the experiment as safe as possible, compensating the volunteers, not requiring such demanding scheduling meetups, and will have the patients best interest in mind. Also, without informed consent the patient can be under the impression that this drug will be helping them. When in reality it can be a placebo pill that is doing absolutely nothing. With informed consent, the patient will now know they are taking a new drug, that may not have any effect or have a big positive impact on them. Patients should have the right to know what is happening to their bodies, and if people are trying to exploit them for free.

Informed consent is definitely an important part of medical research and as mentioned previously, I doubt it would be going away anytime soon; on the contrary, it seems to be gaining even more importance as we go on. However, I do think that with medical advancements, we are not hurting scientific research by having the “consent box”. In my experience, when patients are aware of the possible benefits of helping with research, especially when it seems like it would not be a “sacrifice” for them, they are usually agreeable. I think that the more information and inclusion that is out there helps science become more advanced without overwhelming issues of consent as we can find scattered in history.

I firmly believe the consent is necessary. The patient has authority to say yes or no to what the hospital can do with their specimen. They can be informed of what the benefits are when saying yes, and how they are contributing to the medical field with their donation, but if they do not want to be involved, they are entitled to say no. It's a similar concept with organ donors; if the person dies at the hospital and never signed a consent to donate organs but never denied either, is the hospital the owner of those organs now? A person accepts to donate the organs when they are deceased but they have the option not to do so as well even knowing the benefits it could bring to another human. I think to educate the patients about the benefits of their contribution would be a manner of continuing medical research.

For Henrietta's family, they should've received compensation, unfortunately, at the time the laws were not in their favor but their case was key to the medical laws today.

The debate as to whether or not informed-consent should remain a law or be defunct really comes down to the pros and cons. If Henrietta Lacks had the option of selecting "No" on the informed-consent form regarding her medical visits, then a biopsy would still have been taken if it was known what would come about them. John's Hopkins Hospital at the time, was the only hospital that accepted black patients, which did not stop them from unknowingly taking samples from Lacks simply because they could. This gives rise to the debate as to whether or not informed consent should be treated as a priority when it comes to a patient's own body. It cannot be easily determined whether or not a patient's consent should take priority over treating and possibly curing some of the worst known diseases.

An argument against informed-consent can be stated as:
1) The biopsy does not harm the patient in any way if performed properly.
2) The samples taken will be directed solely for treating others with the same disease, possibly those in the patient's family who are at risk of contracting the same condition.
3) If a patient was suffering from cancer, and the only treatment resided in a cancer cell line, then anyone in the situation would undoubtedly reject the idea of informed consent.

Now in favor of the side for informed consent:
1) Invading a patient's body is against all ethics, especially without any form of disclosure.
2) Patient confidentiality might be breached after studies are carried out.
3) There's a chance that the sample(s) taken will not yield any positive results.
4) If a breakthrough treatment becomes available, then the donor is entitled to compensation proportional to the success of the treatment itself, of which the patient will not likely have much of a say.

So worst-case scenario for nullifying informed-consent is that the patient is harmed during the biopsy and their samples bring about no positive results, whereas the worst-case scenario of enforcing informed-consent is not having a treatment for some of the worst-known diseases. Are there any more advantages and disadvantages of both sides? Assuming patient confidentiality was maintained and that patients are guaranteed to not undergo any harm during the sample acquisition process, is it still okay to omit informed-consent? After Henrietta Lacks had passed away, doctors and researchers would solicit Lacks' family for blood samples to compare cell lines and further their research, knowing that they had no knowledge of the samples that were taken initially. Is it still acceptable to disregard informed-consent knowing that the patient's family might become involved? What if a close family member falling ill with the same condition can only be prevented by eliminating the need of informed-consent?

Informed consent in very very important and I'm happy to say that now a days, it is taken very seriously. Back in Henrietta's case, I don't even think she was given a consent form, she just went for cancer treatment but they took her cells for research and other discoveries that neither she or her family knew about until a generation or two later. In our times, if this were to happen there would be heavy legal charges against the researcher and the hospital/corporation housing the study. Patients have 100% right to choose what is to be done with their data/samples and they must be informed about it throughly before the study even begins.

I feel that for any medical application, consent is necessary. In the times of Henrietta Lacks, there were less regulations than we have now, therefore informed consent was not required in her time. However, since consent was mandated, I do not believe that she or her family should receive royalties from the discovery because she had willingly walked into John Hopkins Hospital for treatment and gave over all her rights to whatever discoveries came from the tumor cells. Nowadays, though, where consent is mandatory, if Henrietta Lacks were to say “no” on her informed consent form, then John Hopkins would have no right to do anything with the samples. If they had stumbled upon a discovery with her cells, they would need to pursue her to gain her consent. They could throw money at her, or other royalties from the discovery. If she refused to consent her cells for medical research, then John Hopkins must comply with her decision.

Personally, I believe that informed consent is one of the human rights and it's very important to be obtained. People has the right to say yes or no because simply it's their bodies. They can be informed of what the benefits are when saying yes, and how they are contributing to the medical field with their donation, but if they do not want to be involved, they have the complete right to say no. The arguments around the future research aspect of samples collected with informed consent are centered on the hospital ethics, but ethical considerations should be applied to the patient’s side as well.

With the way society has progressed over the last few years, consent is more important than ever. If a research hospital would like to use a patient's data/samples in a research study, then the hospital should definitely get permission from the patient first. For one thing, if a research hospital took data from a patient, used it without the patients consent, ended up making a breakthrough, and earned a lot of money, the patient could definitely raise serious legal charges towards the hospital for having her data used without their permission. It is a similar situation to using someone else's music in your video/movie without their consent. If they found out, they could shut the entire project down. For another thing, informing the patient of all the good that can come from their participation hurts no one and if they still refuse to give consent, then their wishes must be respected.

Since the laws were not in place at the time it is trivial to say that her family should have received compensation. The question is how can her family receive what they deserve today? Her two eldest grandsons wish to be made aware of how her cells are used and are not asking for ownership of the cells. I think this is important for the scientific community to make the right decisions even when they are not required to by law. The cell line made a huge contribution to research. Therefore she should be recognized and respected. To do that scientists should be made aware that she has surviving family members who do not wish to see her cells misused.

Since ethics and regulations were not fully enforced back then, I don't her family will be receipt any compensation. Some may argue that the regulation should be made to be retro-effective, but I wouldn't agree with that. If all regulations were made retro-effective, a chaos will created. However, I do believe that the scientific world should at least recognized and acknowledged the impact of her cells and let her family have some sort of role in the future use of those cells. For instance, in 2013, scientists in Germany published a paper announcing they had sequenced the entire genome of a HeLa cell, essentially putting Lacks’s DNA sequence up on the Internet for all to see, according to the Guardian newspaper. Amazingly, they failed to alert anyone in the Lacks family about their intentions or ask their permission.
That same year, the National Institutes of Health announced that two members of the Lacks family would sit on the panel that reviews applications for the genome data and would control access to HeLa cells. The agreement did not include financial compensation for Lacks’s descendants. At least, the family now have some sort of opinion on the use of her cell.

It is very important to have consent from the patient. Today, not only in medicine but also in other fields, consent to use a users information is a must. When you sign up for Facebook, you're consenting to Facebook using your data, so why would medical information be any more lax? Further, if the researchers don't need consent, they would have less inclination to inform the patient of what's going on because they don't need their comfort anymore to get their data. Once you take away the need for consent, you take away the option of privacy, and therefore less people will be willing to participate in many studies.