Ethical Issues in Memory Research with Amnesia

Published: 2021-08-03 05:10:08
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Category: Memory, Experience

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Amnesia is actually a rare condition in which an individual cannot remember or learn information that is saved in memory. Amnesia refers to a great loss of memories that should not have been lost, such as important milestones, people, and knowledge. Some other symptoms of amnesia include confusion and uncoordinated movements. Amnesia is usually caused by a traumatic experience or brain injury, but can result from many things. For example, alcohol abuse can also cause a type of amnesia called Wernicke- Korsakoff’s psychosis, which is when the individual experiences progressive memory loss getting worse over time. Someone with this type of amnesia may also have neurological problems. In most cases amnesia resolves without treatment. There are many different types of amnesia but the two most common types of amnesia are anterograde amnesia, and retrograde amnesia. Anterograde amnesia is when the individual cannot recall newly learned information, but does remember events and data from the past. This usually is caused by some sort of trauma delivered to the head. Retrograde amnesia is rather the opposite, in which an individual can make new memories but does not recall any in the past. It is also possible for these kinds of amnesia to occur together. People suffering from amnesia live a rather difficult life, as they become dependent on someone’s care and forget important information. Individuals suffering from amnesia find it difficult to recall any information from the past, make new memories, or imagine the future. As humans, our ability to retrieve information from the past involves many complex brain functions, and the extent of our memory is still not fully understood. Scientists also still do not completely understand what takes place when one encodes or retrieves information, and therefore memory is an interesting field of study (Nordqvist, 2017). Some of the most noteworthy work in brain science has been a done with amnesiacs, such as Henry Molaison, otherwise known as patient H.M. Patient H.M suffered from severe epilepsy, for which he went through a surgery in the hippocampus. As a result of the bilateral lesions that were made in H.M.’s hippocampus, he lost his ability to make new memories, and the three years of memories before his surgery (Scoville, 1957). Another individual who suffered from extreme amnesia was Clive Wearing. Clive wearing was diagnosed with herpes encephalitis, which affected mostly parts of Clive’s brain that had a function in memory (Sacks, 2017). Although studying amnesiacs may aid in progressing forward in memory research, it is unethical to use human amnesiacs in research, as the individual being studied lacks self-awareness and does not necessarily remember giving consent, nor remember what they are partaking in.
Awareness is usually referred to as obtaining public knowledge or understanding of social or political issues. It also means to have public involvement and promoting a certain cause or movement (Ghosain, 2010). Henry Molaison was definitely involved in memory research, and according to the neuroscientists he was working with, he was most certainly happy in being part of it, but did he actually have the knowledge or the awareness of what he was participating in? In Dittrich’s book (2016), he claims H.M. to actually be sad, lonely, and desperate (Picard, 2018). Patient H.M. suffered from severe amnesia, meaning he could not remember anything including giving consent or participating in research studies (Scoville, 1957). Looking at other cases of severe amnesia, such as Clive Wearing, it is obvious that the individual is incapable of making long-term decisions, as he would not even remember giving consent. Clive Wearing’s brain became prey to herpes encephalitis, which left him with a memory span of only seconds. Clive Wearing’s infection caused not only anterograde amnesia but retrograde amnesia as well. Clive became a desperate, alone, fearful, and confused individual. He knew something was wrong but could not remember what it was. He constantly complained of being deprived of experiences, consciousness, and life itself. As Clive’s wife reported, each waking moment of Clive’s life was as if it was brand new, and each blink of his eyes was a new scene in front of him (Sacks, 2017). Clive was hopelessly disabled, much like H.M. Looking at Clive’s case it would be utterly ridiculous for one to ask for his consent, when he cannot even remember what happened the second before. This was much like H.M.’s case, as he too lost ability to make new memories and lost three years of his past memories after his surgery by Scoville (Scoville, 1957). Asking H.M. to give informed consent would be inappropriate because he cannot recall giving consent or recall what he is required to do for research. Researchers and investigators argue that when an individual cannot consent to research participation, a legal guardian can usually make this decision with them, with the patients “best interests at heart” (Levine, 2016). How do the researchers know the guardian has the patient’s best interests at heart? What if the individual actually does not want to participate in the study? In cases like H.M. it could even be deemed inappropriate for the parents to give consent, as they have also suffered a lifetime alongside their child, and may not have been in a mental state to do so. I think it is unjustified to have asked a guardian to make a decision that would later go on to dictate Henry’s entire life. H.M. was first a victim of Scoville recklessly lesioning his brain and then subjected to years of experimentation without proper consent. He suffered his entire life from some sort of debilitation, then he was dehumanized and made into a guinea pig for memory research. HM may be celebrated as a hero but he was actually a victim. He did not understand his condition and he was completely incapable to understand what he was agreeing to (Darkblue, 2014). I think it takes more than just some signature on a piece of paper to gain consent. Informed consent is a key component in the code of ethics, but informed consent has more to it than just agreeing to participate. Informed consent requires a decision that is based on full understanding of what they are agreeing to. It is the responsibility of researchers to actually help the patients understand what their choices are (Anon, n.d.). For this reason, it is justified to argue that amnesiacs are incapable of understanding what they are agreeing to and should not be subjects of research for ethical reasons (Anon, 2017).Amnesia is the condition in which the individual is incapable of encoding or recalling information that is saved in memory. A person with amnesia suffers a great loss of memories such as, important milestones, people, and facts. There are multiple types of amnesia, with anterograde and retrograde amnesia being the most common. Those with amnesia should not be used in memory research as they cannot provide informed consent, and it is unfair to put the decision of their lives in someone else’s hands, such as a guardian. Amnesiacs usually forget information they are presented within seconds. Someone whose condition is well described is Clive Wearing, and looking at his suffering, it is clear that he would not be able to give consent. Memory research with amnesiacs has proved to be beneficial. An important research participant in neuroscience is Patient H.M., and although studies with H.M led to many discoveries, his entire life was dedicated to research without him evening knowing! Regardless of whether or not science progresses through memory research with amnesiacs, it is unethical and immoral to study these individuals, as the persons being studied are not self-aware, do not understand their choices fully, and are not capable of giving informed consent.

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