Case Study: Henrietta Lacks

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Question 1 -Legal Issue
In this discussion, the legal issue is in regards to privacy rights. Currently, policies allow researchers to input information in a database that all organizations and/or researchers can gain access. Therefore, the privacy of the original donors becomes jeopardized because his/ her permission to release his/her information goes beyond the scope of the permission granted by the donors. By having a database that other researchers have entree to violate the donors’ right of privacy. Dues to modern technological advances, research has now crossed over any privacy that may protect any donor’s right of privacy. This discussion calls up the question on whether policies regarding privacy should change as technology advances.
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When Henrietta Lacks was in surgery before her death in 1951, doctors removed cells, now known as HeLa Cells, without any knowledge or Henrietta or her family to conduct research her disease. During the time of these actions, there were no HIPPA laws or Privacy Acts that prevented the doctors from inputting Henrietta’s medical records in an unprotected database. However, when the Lacks family became aware of the HeLa cells, they raised concerns to NIH of the privacy rights. About three years later, Congress passed Privacy Act of 1974. This act lead as a compelling argument while the Lacks fought to gain control over the HeLa cell research. After years of fighting with NIH, the Lacks family and NIH came to an agreement. The agreement has three requirements. The first is all HeLa sequences to be placed in the Database of Genotypes and Phenotypes. The second requirement is that NIH must create an organization where all researchers who want access to the HeLa sequence must go through an application process. This organization consist of six member two at which are relatives of Henrietta Lacks and is known as the HeLa Genome Data Access Working Group. Lastly, all research and discoveries conducted with the results of Henrietta’s cells apply proper acknowledgment to Henrietta Lacks and her family. Throughout this discussion, the most surprising detail of the case is that the Lacks family did not even know about the cell research for almost twenty years. How could a research institution extract cells from a person with no consent of the donors or his/her family with no unethical thoughts about his/her

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