Module 2 Discussion

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Ohio State University *

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7781

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Medicine

Date

Dec 6, 2023

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docx

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1

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Case Study #5 There are major issues regarding informed consent, communication between patient and physician, and medical record privacy. The Common Rule wasn’t established until 1991, and so receiving informed consent from the patient rarely, if ever, happened. Additionally, there were no standards in regards to using cells taken from a patient for research, nor was there anything prohibiting hospitals from releasing patient information to the public, especially in regards to research findings. Thus, Henrietta Lacks and the case of Moore vs Regents of the University of California were typical of the time since there were no regulations regarding bioethics and no institutions to enforce these regulations. However, the German researchers who released the genome of the HeLa cell line should have obtained explicit consent from the family of Henrietta Lacks, especially since they have been vocal about their dislike of researchers using Henrietta’s cell line and commercializing it. Case Study #6 There is a disconnect between what the Havasupai tribe and the researchers had discussed versus what actually happened. The researchers could have given members of the Havasupai tribe additional choices in how their blood is to be used and who it would be shared with. These additional options could have more accurately reflected what members of the tribe wanted, especially since their blood has spiritual significance. A study that gave the tribe more options as to what could be researched could have opened an additional dialogue in which they could have asked the researchers questions about the consent process and the trials to follow. Case Study #7 Explicit consent must be obtained before any patient specimen can be used for research. Even if these samples are explicitly de-identified, there is still an inherent ability to identify someone based on their genetic makeup and not by sample identification alone. If patients are generally willing to have their tissue samples used for archival research, they should still be asked for clear consent when anything new is to be done on their tissue samples. All of these case studies have something in common, and that is lack of informed and explicit consent throughout the entire process. Sometimes researchers get carried away in their trials, get an idea, and research that idea before sending out an additional consent form while using patient samples. Even with the best intentions in mind, this is still bioethical malpractice and is subject to review by an IRB. The difference between these case studies lies in how much informed consent is invalidated or whether it was obtained in the first place. It is essential for consent to be obtained to continue with or even begin research. In Case Study #5, what had transpired was the norm because the Common Rule wasn’t established yet, until 2013 when the Lacks’ genome was sequenced and published.
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