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jz365 replied to the topic Informed consent: What if Henrietta Lacks checked No for research use? in the forum Clinical Research Basics 6 years, 7 months ago
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.