In Part One of The Immortal Life of Henrietta Lacks, Rebbeca Skloot primarily documents the life of Henrietta. She was born in Roanoke, Virginia in 1920 and grew up working on her family farm. Here, she met her cousin, Day Lacks, whom she would marry in 1941 and parent five children with. By 1942, they had moved to Baltimore so that Day could work in a steel mill and hopefully achieve the American dream. However, the final chapter of Henrietta’s life began when she developed cervical cancer. In January of 1951, she first went to the doctor complaining of a “knot in her womb”; by early October, she passed away in John Hopkins’ colored ward. Yet, as highlighted by Skloot, this would not necessarily be the end of Henrietta herself. During her care at John Hopkins, her cervical cells were unknowingly harvested and found to be “immortal”. Her cells could survive in a culture and be subjected to otherwise inhumane experiments. After her death, her cells, named HeLa cells, were used to study the humane genome, understand the effects of deadly toxins, and to create the polio vaccine.
While it is undeniable that the HeLa cells were responsible for some of the most critical advancements in medicine, it is also clear that their discovery came through morally dubious actions. As stated on page 63, at the time, the medicine did not prioritize patient autonomy but rather “benevolent deception.” Doctors would withhold medical information so “as to not confuse or upset patients.” Doctors knew best, and that was that. Clearly, this culture of unwarranted paternalism infringed on the desires of patients, including Henrietta. As stated on page 48, it was not made clear to Henrietta that the radium treatment would make her infertile; had she known, she would not have undergone the procedure that led to the discovery of the HeLa cells. While a paternalistic medical culture was common back then, that doesn’t justify the violation of Henrietta’s rights. A patient should always have a certain degree of autonomy and basic knowledge of the treatment they are undergoing; for Henrietta to unknowingly consent to infertility is clear evidence of a violation of that right. To somehow justify the treatment of Henrietta at John Hopkins by saying “at least we made advancements due to HeLa” is irrelevant to the question of whether the cells were morally obtained. What happened to Henrietta was patently wrong, though we have all benefitted from that original sin. Yet, if modern physicians were responsible for Henrietta’s care, I feel many of them would still take a paternalistic approach, especially if they knew the ultimate outcome from HeLa cells. Even with this foresight, I feel there is no way to justify Henrietta’s treatment at John Hopkins and harvesting the HeLa cells.
I think your argument about the complete lack of justification for harvesting the HeLa cells is valid. The discoveries that these cells allowed for have been life-saving, but the way that they came about negates the advancements. When Dr. Wharton took Henrietta’s tissue during the surgery, he did so without asking her if she was willing and able to be a donor. Though some could argue that he did not need to ask because she was presented with a consent form, she did not understand the power that her signature gave to the physicians. Henrietta trusted Dr. Wharton to use his training to help her in any and every way possible, but he instead took advantage of her lack of understanding to harvest her cells for Dr. Gey’s lab. This abuse of power allowed for many medical discoveries, but is still a complete violation of patient autonomy. You also suggested that, if this were a modern day situation, physicians would still take the paternalistic approach if they knew about the medical advancements that the HeLa cells would lead to. While I do agree that many physicians would probably argue that the pros outweigh the violation of autonomy, would the more modern medical laws actually allow for this situation to happen again? Is the patient’s right to decide their medical treatment more respected in modern medical practices, or is benevolent deception still the go to strategy? I would like to hope that there are now enough laws that ensure patient protection and consent that violations like these are now reserved for the history books.
J, I’m glad you brought the scenario to a modern age. We look back on history – even recent history such as this- and believe we would not make the same mistakes.Yet, I look at encouters in my personal life and find that I’ve experienced doctors who have grazed over the health consequences of treatments even when involving possibly severe outcomes like infertility.
I undoubtedly believe that current doctors and scientist would repeat the exact steps from 70 years ago because the true crime that is the basis for this behaviour is taking advantage of an already disadvantaged population. Currently in Atlanta, there are blood banks where anyone (homeless, women, men) can give a pint of blood for about $50. What is that payment an indication of? Surely its not a population of people who are monetarily set. Its a system that takes advantage of people who are most vulnerable to socioeconomic pressures and in Atlanta its a largely black population. People who are thoroughly unaware of where their blood is going, what it’s being used for, and what type of consent they should be concerned about. There is no trade off for exploiting humans for science and Henrietta is a prime example of this.