Henrietta Lacks - HeLa Cells

Henrietta Lacks – HeLa Cells

Chandler G. Jones

BSRC, RRT, RRT-ACCS, RRT-NPS, CPFT

December 2018

Abstract

The story of Henrietta Lacks and the HeLa cells is one of ethical controversy, medical miracles, and personal hardships. Ethical situations arise with her story including consent, privacy, race/health disparities, and ownership of genetic material to name a few. Medical breakthroughs were possible due to HeLa cells such as polio vaccines and advances in understanding diseases like cancer and has revolutionized how scientists view certain diseases. Henrietta and Henrietta’s family, being of African American ethnicity, suffered racism and health disparities. This family like many others suffered from poverty, too. Rebecca Skloot’s book The Immortal Life of Henrietta Lacks brought to light the conundrum that surrounded the women and the ethics that were not evident in her care. These ethical controversies could have been avoided with the boundaries that are in place today.

Henrietta Lacks – HeLa Cells

Rebecca Skloot’s best seller, The Immortal Life of Henrietta Lacks, not only gives credit to Henrietta Lacks for her unknowingly generous contribution, but it also paints a picture as to how this situation came about. All one can do is consider these scenarios in retrospect, and rest assured knowing that Henrietta’s vital contribution paved the way concerning certain judicial decisions and medical miracles. These decisions are due to the unethical variables that were unfortunately in Henrietta’s life. The literature talks of Henrietta and her contributions to medicine, those involved with her care, and her family, whom themselves were suffering through hardships. Considering the time and the mindset of society, one can see how this story unfolded, and how it became an ethical bombshell.

Ethical conundrums are riddled all through-out the book. Consent, privacy, and race, or health disparities are the most vibrant violation in this literature. When speaking of consent, a violation of this concept is noted right off the bat. Unbeknownst to Henrietta, Dr. Lawrence shaved two dime-sized portions of Henrietta’s cervix and placed them on a glass dish to be given to Dr. Gey for research reasons. One of the samples taken were of healthy tissue. One may wonder why these individuals were so comfortable doing this without informed consent from the patient — performing an act of assault in some eyes. Scientists at this time believed that those that were treated free were fair game for research options. The majority at-risk population at this time was the African Americans, women and those in the poverty status – Henrietta fell into every category. 

            In this day and age, there is very little if any ethnic prejudice in hospitals. Rights of women, African Americans and those of lower financial standing have changed. In 1965 Medicaid came about, aiding the needy, regardless of age, with health insurance. Reproductive health rights and women’s/equal rights have been added and revised heavily in the last seventy years. Again, this is in hindsight. Henrietta could have been formally informed of the tissue extraction idea and either given or denied consent. Reading of Henrietta’s family, the answer would have most likely been “no.” The physicians could have recognized Henrietta as worthy of their care and would have been monitored more closely. As noted, multiple masses had been missed as well as the accusations of initial misdiagnosis. A concise one-on-one approach could have not only enhanced Henrietta’s care but could have yielded an informed consent with gained rapport. To improve the informed consent process Beskow (2016) finds that “the only intervention consistently shown to be effective was a one-on-one discussion with a person...” (p. 399). Withholding information such as infertility with radium procedures could have swayed consent and may have been a reason they withheld that information as well. Benevolent deception was a common practice in this time. 

Privacy concerns are evident as we now know of Henrietta and her family. In 2013 a team of researchers posted the entire genome sequence online for all to see (Skloot). This data contained “probabilistic information” about Henrietta and her relatives (Beskow, 2016). Although the information was taken down, it does not take long for information to spread on the internet. Though many, many specimens have been researched and used for scientific progress, not many hold much value, not to the level of HeLa cells. The infamy of not only the cells but the story itself brings in more researchers. Henrietta’s identity is now known, just as is her families and this is due to the massive publicity HeLa cells have gained. Many articles were written and published concerning Mrs. Lacks. 

HIPPA, established in August 1996, aims to protect patient information such as this. Thinking back, protecting the privacy of the patient should have been a priority. Only allowing those specific to the care of Henrietta to gain access to health records would have aided in protecting patient privacy. Limiting media involvement, in general, would have decreased the amount of publicity and off the record discussions about the “immortal Lacks.” For instance, it was by accident that anyone learned about HeLa cells, another privacy breach on the part of healthcare and researchers alike. Just to put it in perspective today, hacking in 2016 was recorded to have involved almost seventeen million individual patients and their health information (Abouelmehdi, K., Beni-Hessane, A., & Khaloufi, H., 2018). Media of the day spread like wild fire, and it wasn’t long until people realized the women behind the cells.

One of the glaring ethical components of this book revolves around biospecimen manufacturing and sell, and whether compensation is due. One of the arguments posed by selling cells is that it will hinder research and erase economic incentives to pursue said research. On the other hand, one could say that if HeLa cells wear essentially obtained unknowingly and sold, that would be theft. Considering the hardships that Henrietta’s family had to endure, it only feels natural to compensate the family. The problem therein lies to whom does the money go to and how much is acceptable? The literature explains that “the sheer number of samples in storage today means that paying anyone subject would be difficult and that payments would be minimal in those cases where they could be made” (Robertson, C., & Loe, J., 2016). The arguments are ongoing.

Regarding manufacturing these cells – if they had not been, the miracles they performed would not be around. They were manufactured without Henrietta or the family’s knowledge. Allowing the family to be a part of the testing process and the groundbreaking science could have yielded some sort of consent, but the HeLa breakthrough was surrounded in secrecy.

In all of these situations, considering the choices that could have been made, a patient advocate could have spoken up in this situation. Known as someone that speaks up for the benefit of the patient unbiasedly, patient advocates in this situation could have reminded the staff of the policies set forth for the hospital, the standards of care, and of ethical considerations that might be in play. Groups of advocates should be implemented in medical facilities. Research explains that “patient advocacy organizations (PAOs) are influential health care stakeholders that provide direct counseling and education for patients, engage in policy advocacy, and shape research agendas” (Rose S et al., pg. 344, 2018).

In conclusion, The Immortal Life of Henrietta Lacks was a necessary piece of literature and should be reviewed and exposed on a larger scale. It gives in to the shady working of old-school medicine and exposes the reader to the ethical absence of the time. Practitioners have come a long way in regard to protecting and advocating for the patient. The mindset of society at the time of Henrietta Lacks was something of a nightmare. Women were not respected as they are today, African Americans were shunned and mistreated, and the poor were disregarded – Henrietta Lacks was all of these, and the cards were stacked against her. Making sure the patient understands what they are consenting to, what that entails, they are promised privacy, media of all sorts is out of the picture, and a patient advocate is present can help diminish the occurrences that Mrs. Lacks encountered, and her family continues to struggle with.                  

References

Abouelmehdi, K., Beni-Hessane, A., & Khaloufi, H. (2018). Big healthcare data: Preserving        security and privacy. Journal of Big Data,5(1). doi:10.1186/s40537-017-0110-7

Beskow, L. M. (2016). Lessons from HeLa Cells: The Ethics and Policy of                        Biospecimens. Annual Review of Genomics and Human Genetics,17(1), 395-417.        doi:10.1146/annurev-genom-083115-022536

Robertson, C., & Loe, J. (2016, January 08). Learning the wrong lesson on privacy from  Henrietta Lacks. Retrieved April 11, 2019, from            https://www.washingtonpost.com/opinions/learning-the-wrong-lesson-from-henrietta       lacks/2016/01/08/723877cc-b60a-11e5-a842-0feb51d1d124_story.html

Rose SL, Highland J, Karafa MT, Joffe S. (2018). Patient Advocacy Organizations, Industry        Funding, and Conflicts of Interest. JAMA Intern Med.2017;177(3):344–350.    doi:10.1001/jamainternmed.2016.8443

Skloot, R. (2015, December 30). Your Cells. Their Research. Your Permission? Retrieved April  11, 2019, from https://www.nytimes.com/2015/12/30/opinion/your-cells-their-research     your-permission.html