Week 6_ PART A - Notes on the reading & video on Henrietta Lacks

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Week 6: PART A - Notes on the reading & video on Henrietta Lacks 1. Who were: Helen Lane? Helen Lane was the pseudonym given to the HeLa cell line. The name HeLa actually came from Henrietta Lacks- the first two letters of her first and last name; This was typically the way the scientist Dr. George Gey at the Johns Hopkins Hospital named the cell lines used in his lab. The act of anonymising the samples was not a big concern back in the day when the cells were collected and hence the identity of Henrietta Lacks was not concealed. However, when the press media got close to locating the family of Henrietta, the researcher came up with the name Helen Lane instead of Henrietta Lacks, to mislead the media. More pseudonyms like Helen Larsen were in the picture as well. The actual name Henrietta Lacks was only revealed in the 1970s (Zielinski, 2010). Jonas Salk? Jonas Salk was an American medical researcher, who developed the polio vaccine in the 1950s. Post development, his biggest hurdle was testing it, for which he needed large quantities of the HeLa cell line. This was the first major use of the HeLa cell line. One of the world’s most devastating diseases around the time, the HeLa cell line fastened the vaccine making process. Originally, Salk wanted to test the vaccine on monkeys. However, monkeys were expensive and also their cells were killed during the testing process. The best cells would be the ones susceptible to the virus, but wouldn’t be killed by it. HeLa cells were the only cells that fulfilled this requirement because they were ‘immortal’. The use of HeLa cells to test the polio vaccine has helped eliminate polio from a lot of countries of the world. Russell Brown & James Henderson? Russell Brown was the director of the Carver Research Foundation at the Tuskegee Institute, which was the primary institute to grow the HeLa cell line on a factory scale and provide them to Jonas Salk for testing his polio vaccine. Brown was the director of the project while James Henderson, who was a plant physiologist, assisted him. Since they were not adept at the culturing of HeLa cells, they sought training from William Scherer, at the University of Minnesota, before returning to Alabama to set up their own HeLa cell factory. Despite challenges, they were able to grow the cells and provide them to Jonas Salk just in time for summer, which was when polio infections surged (Ramirez, 2021).

2. Contrast the rationales given by NIH Director Francis Collins versus Attorney Christopher Robertson on requiring informed consent for using de-identified (anonymized) human samples for research and development? The rationales given by NIH Director Francis Collins versus Attorney Christopher Robertson on requiring informed consent for using de-identified (anonymized) human samples for research and development were quite contrasting and they have been studied as below (Beskow, 2016): Advocates of Informed consent: Those who argue for informed consent even in de-identified human samples believe that all individuals have a basic right to control how their biological data is used. Breach of this personal control itself is an ethical issue. Informed consent also promotes trust between researchers and participants. Opponents of Informed consent: Those who argue against ‘strict’ informed consent argue that excessively strict regulations to control consent can be a massive hindrance to the speed of scientific progress, because getting individual consent from every participant can be very tedious and time consuming, apart from being very expensive. This can be vital during times when a vaccine is the need of the hour and a scientific discovery is very important, for example, the COVID-19 vaccine. They might also argue that if the de-identification is done properly, there are very low chances of re-identification of the sample, and hence strict informed consent might not be needed. 3. What was the Warm Springs Foundation in Georgia? What role did it have in polio and racial disparities? The Georgia Warm Springs Foundation: The Georgia Warm Springs Foundation is a place for treating the effects of infantile paralysis. Medical care is the most important thing there. But they also believe that keeping up people's spirits and morale is helpful for treatment ( Disability History museum--Georgia Warm Springs Foundation, 1940 , n.d.). Its role in the polio and racial disparities: During FDR's 1936 reelection campaign, segregation at Warm Springs, a place he frequented, became a contentious issue. Critics claimed it was a money-making scheme, and there were rumors about his polio's effects. Republicans used Warm Springs' admission policies to question the Democratic Party's commitment to civil rights. Some Black people were denied treatment, causing public outcry. A surgeon at Warm Springs defended the segregation, citing its focus on

polio treatment and budget considerations. This controversy highlighted healthcare discrimination and was seen as a failure of FDR's administration to address social justice and civil rights (Rogers, 2007). 4. Who do you think should "own" samples derived from a human donor? What factors should be considered? Ownership of human-derived samples should find a balance between donor rights, scientific progress, and societal benefit. Ethical principles and laws should guide these decisions, protecting donor welfare and privacy while promoting the common good. Determining who owns samples from human donors is a complicated matter, involving multiple ethical and legal factors to consider ( Ethics of Deceased Organ Donor Recovery - OPTN , 2016). Some are listed below: Donors' Consent: Donors should agree to how their samples are used, specifying purposes and users. Privacy Protection: Donor ownership should not jeopardize their privacy or personal data. Benefitting Donors and Society: Ownership should prioritize advancements in research, diagnostics, and therapies for the benefit of donors and society. Fair Compensation: Donors may expect fair compensation, especially if their samples lead to profits. Advancing Science: Ownership should support scientific progress for the common good. Legal Compliance: Ownership must follow local and international laws, including intellectual property and data protection regulations. Transparency and Accountability: Clear ownership policies and mechanisms ensure transparency and accountability. Cultural Considerations: Cultural norms may influence ownership, requiring sensitivity to these factors. 5. What kind of a tiered consent system would you propose for research applications of human biopsy tissue? For example: ● cells taken from living patients vs deceased patients ● anonymized vs non-anonymized human donors ● commercialized human cell lines versus use cells used for only a single research project (non-commercialized) For research applications of human biopsy tissue, the following tiered consent system could be useful (Grady et al., 2015):

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