Fact or Fiction: Another HeLa periodical

Salient, paramount, significant, powerful can all be synonyms for the HeLa cells. The Immortal Life of Henrietta Lacks educates us, as readers, on how the HeLa cells have altered the face science, how different individuals (scientists, writers, etc.) have exploited the news of the cells and the Lacks family, all the while keeping them oblivious of the cell’s existence and triumphs. Skloot depicts each character with utmost sincerity; even though the timelines sometimes interchange, each fact is appropriately aligned with its corresponding endeavors. The book is extremely well written and easy to read; according to me, Skloot demonstrated all the characters fairly and demonstrated, through words, what all the Lackses actually went through. A very touching example of how much Henrietta’s children suffered was well illustrated in Skloot (2010) chapter 15, “Henrietta’s children grew up hungry. Every morning Ethel fed them each a cold biscuit that had to last them until dinner. She put latches and bolts on the refrigerator and cupboard doors to keep the children out between meals. They weren’t allowed ice in their water because it made noise. If they were good, she’s sometimes give them a slice of bologna or a cold wiener, maybe pour the grease from her bacon pan onto their biscuit, or mix some water with vinegar and sugar for dessert. But she rarely thought they were good” (p. 111).

The HeLa cells are an important part of our history, however, in addition to her unique cells, Henrietta Lack, the person, deserves being recognized. Christoph Lengauer was one individual at Hopkins that believed “her [Henrietta] cells are how it all started. Some people know those are the initials of a person, but they don’t know who that person is. That’s important history” (p. 266-267). Personally, I think even if Henrietta had done one of two things, given permission for her cells to be taken and her medical information published or given permission and informed her family about it, the Lackses would not have known how to patent the HeLa cells or stop anyone from using the cells because they just did not know enough about the cells, science, or any other legal processes. When Christoph revealed details about the HeLa cells to Deborah and Zakariyya, they were pleasantly surprised that someone was finally explaining them the unknowns. Deborah stated, “everybody always talking about cells and DNA, but I don’t understand what’s DNA and what’s her cells…so we don’t have the thing that made her cells grow forever? [Christoph shook his head] Now you tell me after all these years! Thank God, cause I was wonderin!” (p. 264-265).

Henrietta Lacks was depicted as a strong, confident woman and even though this story was set in the 1950’s when HIPAA and other relevant laws did not apply, it is imperative that the readers know details about the Lackses that the other journalists or authors failed to portray. Today, unethical practices in medicine can have some serious repercussions. There are several examples described in the book that teach medical professionals how to learn from mistakes that were made. For example, before Dr. Wharton Jr. tried to treat Henrietta’s cancer with radium, “– though no one had told Henrietta that [Dr. Richard Wesley] TeLinde was collecting samples or asked if she wanted to be a donor – Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish” (p. 33). This is a huge HIPAA violation that can have catastrophic consequences today. Another example was when Hsu, who had an extremely thick accent, called Day and told him that she will need blood from everyone in the family. When the samples were being collected, the entire family was told that “doctors from Hopkins coming to test everybody’s blood to see if you all got that cancer your mother had. For the next several days, [after the samples were taken] Deborah called Hopkins again and again, telling the switchboard operators, “I’m calling for my cancer results.” But none of the operators knew what tests she was talking about, or where to send her for help” (p. 184-185). When patient samples are taken, it is legally required for the collector to inform the patient what the tests are being done for and how to obtain their results. Lastly, patient records are considered confidential and cannot be released without permission. This was demonstrated in Skloot (2010) chapter 26, “it wasn’t illegal for a journalist to publish medical information given to him by a source, but doing so without contacting the subject’s family to ask additional questions, verify information, and let them know such private information was being published could certainly have been considered questionable judgement” (p. 211).

The entire story revolving around the HeLa cells has been inspirational. This narrative has validated the fact that ethically, when Henrietta’s cells survived, where other cells perished, she should have had a legal right to know. As health care leaders, Henrietta’s story teaches us to respect patient privacy, take the time to converse with your patients, remember that most patients do not understand the medical language, and it is always important to help the patient find a support system. More importantly, it teaches us to keep our personal opinions at the door and do what is best for the patient. Today, when doctors go into a room, it should be their utmost priority to ease their patients concerns and provide support in any way possible.

Overall and over time, HeLa cells have made inventions and discoveries possible in conjunction with the amazing scientists who wouldn’t give up. People are extremely thankful for HeLa and by writing a book on the Lackses, Skloot has given the most deserved acknowledgement to them.

References

Skloot, R. (2010). The immortal life of Henrietta Lacks. New York, NY: Crown Publishers.