What information about the Lackses was published by McKusick and Hsu? Why is the
publication of this information troubling from an ethical and legal standpoint?
McKusick and Hsu tested the Lackses' blood to determine what genetic markers they had as well as publishing their genetic information and the genetic information of Henrietta, along with a picture of her. This picture, according to the Lacks family, was never given with consent. "Day swore he'd never given it to McKusick or any of Henrietta's doctors," (Sklotot 189) and "no one had ever asked permission to publish it" (Skloot 189). This brings up, not only problems of theft, but also problems concerning the legality of the information that was published. Aside from the picture, the family's entire genetic identity was put out into the open. "McKusick didn't give Hsu instructions for explaining the research to the Lackses," (Skloot 182) meaning that the family had no way of knowing what their tests were for, violating the law that requires informed consent of the individuals being tested. The family believed that they were being tested for cancer, but in reality were being exposed for the benefit of the scientists conducing the research. It is true that there may also be some credibility issues with respect to whether or not Day was telling the truth about not having knowledge of how the picture ended up where it did, but it is also true that testing subjects without fully informing them because "this attitude wasn't uncommon at the time," (Skloot 183) especially when the subjects being tested were uneducated about what they were even being tested on.
In addition to what Alejandra stated, this problem of researchers and scientists being targeted as thief’s has been an ongoing event that occurs many times to Henrietta, and also to other patients who scientists and doctors feel, they can milk to make themselves more important. The only direct difference between then and now is that there is a law that is mandatory for scientists and researchers to follow. Many instances of human fluids or tissues, or personal information being taken as property by these researchers kept popping up, and many problems also increased between the patients and these “thefts” that it would become a political and social issue.
It could be the return of individual results to research participants, which seems a little debated, so maybe such point can promote further discovery services.
McKusick and Hsu tested the Lackses' blood to determine what genetic markers they had as well as publishing their genetic information and the genetic information of Henrietta, along with a picture of her. This picture, according to the Lacks family, was never given with consent. "Day swore he'd never given it to McKusick or any of Henrietta's doctors," (Sklotot 189) and "no one had ever asked permission to publish it" (Skloot 189). This brings up, not only problems of theft, but also problems concerning the legality of the information that was published. Aside from the picture, the family's entire genetic identity was put out into the open. "McKusick didn't give Hsu instructions for explaining the research to the Lackses," (Skloot 182) meaning that the family had no way of knowing what their tests were for, violating the law that requires informed consent of the individuals being tested. The family believed that they were being tested for cancer, but in reality were being exposed for the benefit of the scientists conducing the research. It is true that there may also be some credibility issues with respect to whether or not Day was telling the truth about not having knowledge of how the picture ended up where it did, but it is also true that testing subjects without fully informing them because "this attitude wasn't uncommon at the time," (Skloot 183) especially when the subjects being tested were uneducated about what they were even being tested on.
ReplyDeleteIn addition to what Alejandra stated, this problem of researchers and scientists being targeted as thief’s has been an ongoing event that occurs many times to Henrietta, and also to other patients who scientists and doctors feel, they can milk to make themselves more important. The only direct difference between then and now is that there is a law that is mandatory for scientists and researchers to follow. Many instances of human fluids or tissues, or personal information being taken as property by these researchers kept popping up, and many problems also increased between the patients and these “thefts” that it would become a political and social issue.
ReplyDeleteIt could be the return of individual results to research participants, which seems a little debated, so maybe such point can promote further discovery services.
ReplyDelete