Evaluation of The Immortal Life of Henrietta Lacks and the Impact on This Author

The Immortal Life of Henrietta Lacks by Rebecca Skloot paints an effective picture of Henrietta’s life, her ever-growing contributions to science through HeLa cells, and the trickledown impact on her family, friends, and others who either knew her story or were involved in the process. Growing up we learn of the contributions others have made to science, but those individuals represent the racial majority and furthermore, their methods of specimen collection and research subjects are often painted in a gentle light due to the possible controversy that could result from the raw truth. This book is both intriguing and through-provoking on issues such as racism, socioeconomic status, and informed consent. In my home, it started an educated discussion and raw history lesson on how an African American woman’s cells likely contributed to the discovery of the immunizations, medications, and medical procedures that help us sustain our health today.


As stated under “Á Few Words About This Book”, Skloot states that she did her best to portray all parties involved in the way they spoke and wrote. She informs readers of Henrietta’s death and how she had to rely on interviews, records, and personal stories from people who knew her both before and during her sickness and death. Skloot wrote about a Lacks family member who told her if she changes how people speak, her work would not be honest because it diminishes the stories of their lives as well as the experiences they have shared with her (Skloot, 2011). There are no problems presented in the portrayal of Henrietta and her family because Skloot adhered to that advice presenting the story of the Lacks’ family from their direct perspectives.

The collaboration and reporting process with Henrietta’s daughter Deborah was understandably tasking not only for Skloot, but others as well due problems with her genetic makeup (incest), limited education, and both her physical and mental health. Readers should appreciate how Skloot was able to convey the information she obtained from Deborah in a way that still represented her life and experiences throughout this process. Had the author incorporated the ramblings she described, (e.g., when Deborah was being interviewed by the BBC and began to speak about going into a corner after she was married with her husband not knowing what was wrong or what to do while she was sad and crying), the story would have made less of an impact to the audience because it would have veered off topic too many times (Skloot, 2011, p. 217-218).


I agree with Lengauer’s quote about the importance of knowing about Henrietta Lacks because of how prominent her contribution to science, the healthcare industry, and our lives have been, and continue to be, since her death. The discussions her story create continue have the potential to change several variables in healthcare including the standards of care, scopes of practice, ethics, and the development of laws that protect patients, providers, and researchers. We must remember that times were different then- education did not matter as much as skin color, which did not matter as much as money. Henrietta Lacks’ story gives readers food for thought on a number of injustices that were happening then, including racism, slavery, women’s rights, patient privacy, ethics, and the inhumane, deadly actions (i.e., injecting people with diseases in exchange for a place to sleep) that ironically have led to the discovery of cures and other preventative measures that have saved lives for more than half a century.


Henrietta Lack’s story has helped me become a more ethical leader by giving me more avenues to consider when it comes to laws and regulations in healthcare. Sometimes these standards can seem a bit muddled, so I now have an enhanced understanding of why I need be clear on what actions I deem ethical but might still constitute violations. I also want to be the best person I can be, and this might require reporting violations that could potentially damage personal and professional relationships. Upholding internal and external policies most likely falls in like with effective ethical leadership than not, which is important because it aids in better treatment of patients, decreases organizational breaches and confidence in providers, and helps sustain the organization in the process.


According to the story, George Gey did not acquire Henrietta’s tissue for personal or financial gain- he just wanted to make a difference (Skloot, 2011, p. 193). Although he started the chain reactions that came at costs he could not have foreseen or even understood, it still brings his ethics into question even if his actions were not illegal. Today, medical professionals can prevent unethical practices by evaluating each patient in ways relevant to them as individuals to determine the best approach to care because no two patients are the same. Internal and external auditing can also help keep medical professional on the ethical track, in addition to a compliance department that trains, monitors, and reports violations as necessary. Finally, the situation surrounding the collection, distribution, and use of Henrietta and HeLa cells had no true chain of command; the medical professionals involved had no true knowledge of Henrietta’s medical history- just what her cells were capable of. Accountable Care Organizations (ACOs) are available today and allow doctors to share and collaborate when caring for patients, offering the best chance of health maintenance and other desired outcomes. Medical professionals can discourage unethical practices amongst each other by joining an ACO, in addition to reducing misdiagnoses, duplicate procedures, and providing unnecessary treatments (MGMA, 2019).


Medical Group Management Association (MGMA). (2019) Accountable Care Organizations (ACOs). Retrieved December 9, 2019, from https://www.mgma.com/advocacy/issues/medicare-payment-policies/accountable-care-organizations-(acos)

Skloot, R. (2011). The immortal life of Henrietta Lacks. New York, NY: Broadway Books.

Henrietta Lacks and Health Care Leadership
Until Rebecca Skloot penned The Immortal Life of Henrietta Lacks, I had never heard of Henrietta Lacks. After reading the book, I am not sure if I should have ever heard about Henrietta Lacks or her family. There is no doubt in my mind that the medical breakthroughs that stemmed from research on her HeLa cells were/are extremely important and historic. However, there is doubt in my mind that there ever needed to be a story behind those breakthroughs and that it needed to be told.

The Importance of Henrietta Lacks

Rebecca Skloot quotes Christoph Lengauer as saying “Whenever we read books about science, it’s always HeLa this and HeLa that. Some people know those are the initials of a person, but they don’t know who that person is. That’s important history.” (Skloot, 2010, p. 266). If I could have a conversation with Mr. Lengauer, I would ask him to expound on that comment. Why is it important to know who Henrietta Lacks was? I have to believe that there has been other significant research done where we have no idea who owned the donated or excised cells. I can’t think of a single instance where I have read/heard anything like “if we only knew who those cells belonged to...”

I do not see a direct correlation to knowing the donor of cells and the donated cells themselves unless there is scientific proof that the life (not to be confused with the genetic makeup) of the donor matters for research purposes.

Portrayal or Betrayal?

While everything that I learned about Henrietta Lacks and her family from reading Skloot’s book was interesting (and often disturbing), other than for the purpose of providing color, I do not think their story needed to be told to understand the importance of the HeLa cells. What purpose does the knowledge that there was a history of syphilis in the family serve? What bearing does Zakariyya’s name or how it came to be, have to do with the HeLa cells? While the backstory of Elsie Lacks and her time at Crownsville is heart-breaking, it had no bearing on the HeLa cell research. Based on the portrayal of Deborah Lacks, I doubt that she would have been pleased with the published version of the book. She may have been okay with it initially; however, with time I think she would have come to resent the level of detail and specificity shared – especially in these cruel times of social media.

Skloot could have almost written another book – a work of fiction - based on the Lacks family and the public would have been none the wiser and the journey of the HeLa cells could have still been told.

Ethics and Leadership

I would like to think that the story of the way the Lacks family was exploited would not exist to be told today. Medical professionals are held accountable by the patients and families they serve. Patients are gaining a better understanding of their patient right to privacy and are arming themselves to protect against those in the medical community who may not have their best interests at heart.

As they did in the days of Henrietta Lacks, patients expect medical providers to care for them and do no harm. Caring for patients goes beyond just healing their person. Caring includes listening, hearing and understanding all aspects of their patients and patient families’ needs.

Conclusion

I am glad that I was assigned this book to read. Beyond having never heard of Henrietta Lacks before reading this book, I had also never heard of Crownsville or Night Doctors or Clover. Still, that part of the story and the details that support it could have been shared apart from the HeLa research narrative. While I am sad for the Lacks family and what they went through, I think the HeLa story could have been told without exploiting the Lacks family history.


References

Skloot, R. (2010). The Immortal Life of Henrietta Lacks. [Audiobook]. Random House. Audible.