What lessons do we learn from the book The Immortal Life of Henrietta Lacks?
Hello! You asked about what we can learn from The Immortal Life Of Henrietta Lacks. Henrietta Lacks was an African-American woman who died from cervical cancer in 1951. Before she died, her doctor cut out a small portion of her cancerous cells without her knowledge. The cells were given to Dr. George Gey, the head of tissue research at Johns Hopkins Hospital. The HeLa cell line is the first immortal cell line ever grown in culture, and today, it is used in laboratories all over the world for the purposes of medical research. Some of the things we learn from the book:
1) The concept of patients' rights and informed consent was not heard of in the 1950s. The HeLa cell line inspires us to open up an honest conversation about those rights today. Henrietta's medical records were actually published without her family's permission at one point. Today, it is important to know that patients do have certain rights when it comes to their medical records, yet, as of the book's writing, informed consent laws regarding cell harvesting and tissue research are still virtually non-existent today.
2) The question of ethics within the medical community: should hospitals like Johns Hopkins, which has profited billions of dollars from the HeLa line, share some of that profit with the Lacks family?
3) From the book, we learn that although Henrietta's family suffered confusion, pain and the embarrassment of public scrutiny (all without being compensated for it), the HeLa cell line has contributed immense relief to many suffering patients. We are led to ask ourselves whether the greater good is enough compensation for one family's pain and whether the greater good supercedes a family's discomfort.
4) The book has been an important catalyst for necessary conversations among Henrietta's descendants about Henrietta and her contribution to science. They now know what Henrietta's cells have done for the world and how it has alleviated suffering. They have been able to ask questions and to receive answers. The book shines a spotlight on the suffering children endure when they lose a mother in their growing up years.
5) Rebecca Skloot's book also sets the record straight about the doctors who used Henrietta's cells without her knowledge. Dr. George Gey himself did not profit personally from the research he did with Henrietta's cells. The book educates us about the history of Johns Hopkins hospital, which was originally started as a charity hospital for those who could not afford medical care. Charity care was available for all, regardless of age, sex or color and the book chronicles that Johns Hopkins
also set aside an additional $2 million worth of property, and $20,000 in cash each year, specifically for helping black children: It will be your duty hereafter to provide ... suitable buildings for the reception, maintenance and education of orphaned colored children.
Yet, the book also highlights gross mistakes made by Johns Hopkins researchers, among them,
In 1969, a Hopkins researcher used blood samples from more than 7,000 neighborhood children—most of them from poor black families—to look for a genetic predisposition to criminal behavior. The researcher didn't get consent. The American Civil Liberties Union filed suit claiming the study violated the boys’ civil rights and breached confidentiality of doctor-patient relationships by releasing results to state and juvenile courts. The study was halted and then resumed months later using consent forms.
6) The question arises of whether race had a part to play in the decision to take Henrietta's cells without her consent. In Henrietta's time, the public wards at the Johns Hopkins hospital were used for the poor, whether Caucasian or African-American. Since Henrietta received treatment for free, the doctors felt no compunction in taking the cells for free, as they reasoned that it ultimately contributed to the greater good of all. The issue largely comes down to class: the lack of education and the subsequent lack of guidance the poorer classes had access to affected the decisions they made regarding their health care.
“Hopkins say they gave them cells away,” Lawrence yelled, “but they made millions! It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”
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