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The book that I have chosen to read for my book assignment is The Immortal Life of Henrietta Lacks by Rebecca Sklott. The first word that comes to mind when I think of after reading this novel is deceived. I think about that when reading how the John Hopkins Hospital in Baltimore deceived Henrietta Lacks by profiting off her tissue sample. The story began talking about an African American woman, Henrietta Lacks, whose cancer cells were used for experimentation to create an immortal cell line. In 1951, Henrietta went to the Johns Hopkins Hospital in Baltimore to do a check-up on her cervix. Later after she was treated, the doctor diagnosed her with cervical cancer. After being treated for her tumor, during the procedure, a substantial amount of her tissue that was removed had been taken. I say taken because Henrietta did not consent to anyone to have her tissue cells grown inside some tubes in a laboratory. The head of the tissue department at the hospital, George Grey, without consent had begun experimenting on the newly acquired tissue cell and had a breakthrough. After years of experimenting to have cells divide continuously and infinitely, they had their one. Henrietta who was battling the cancer was not even informed after the breakthrough had happened. After the trials of radiation and treatments, Henrietta died at a young age. She left behind a husband and five children who were poor and uninvolved with the community. A tragedy it was but her name was to become famous even though she had passed away. The family was never informed of the breakthrough in the science lab even after she died which raised questions. From a reader perspective the first thing that came in my head was the hospital only wanted to profit off the cells. None of the money gained was ever given to the family who was going through a rough patch when Henrietta died. One of the daughters encountered Henriettas cells which were called HeLa cells at the National Cancer Institute. This was such a turning point in the story because the family finally found out about cells that were still alive which belongs to Henrietta. The feelings felt were definitely exploited because the hospital was profiting from their mothers cells while they were still living a poor lifestyle and could not afford any medical insurance. This is unethical and atrocious because the family was deprived of any financial gains and the truth of Henrietta. After years of inexistence to the success of the first immortal human cell line, Henrietta was finally recognized. Rebecca Skloot was able to help Deborah Lacks to identify her mother and how her cells were able to lead to medical breakthroughs. This womans silent impact was able to change the lives of many and medical treatments forever.
One related legal topic that we discussed in class that also relates to this situation is certain rights to certain health care. As a consumer, we have the right to informed consent and patient self-determination. Henrietta Lacks was denied that right when her cancer cells were used for experimentation without being informed. This led to the creation of the Health Insurance Portability & Accountability Act (HIPAA) which protects the privacy, confidentiality, and security of patient information. This bill was a revolutionizing bill that brought new privacy standards, security standards, and fraud provisions. As world-changing, the cancer cells were the hospital can be viewed as a fraud for stealing. They went out to acknowledge the findings as their own without giving any type of credit to the victim. Any type of recognition could have ultimately helped the family to get out of poverty and have a chance at having a life. The hospital took in all of the profits without contributing anything. In 1951 if HIPPA was enacted then none of those cells could have been taken if there were rules that prevented a doctor to take them. These scientists should be labeled as criminals for their actions because if this law was enacted back then, they could have easily been convicted for inappropriate access. It could have held the violators accountable for breaches through enhanced civil and criminal penalties. In todays age, it is legal to use someones organs for scientific purposes, but they also have the right to deny any access. Although scientific research increases and improves care it still does not give the right to access the patients cells.
Another legal topic discussed in class that relates to the family not being able to afford healthcare coverage is EMTALA. This bill says, the increasing number of reports that hospital emergency rooms are refusing to accept or treat patients with emergency conditions if the patient does not have medical insurance . The book described how the family of Henrietta Lacks struggled with affording any medical coverage. If they were in an emergency situation that required medical assistance, they were not able to get taken care of. This law was put in place to protect the indigent and women in active labor. If this was enacted in 1951, everyone would have been eligible for the appropriate medical screening exams that were necessary for stabilization.
I found this story to be inspirational because Henrietta Lacks was finally recognized for being the focal point of the many medical discoveries of our time period. Laws were not legislated at the time unfortunately to help people like Henrietta, but they were enacted later on. She set the stone for laws like HIPPA AND EMTALA to be made to prevent anything like this to happen ever again. I felt a connection to the family with how unfair it was for them and not getting treated equally in their community. They deserved better and should have been acknowledged for the unethical act John Hopkins committed.
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