Case 7.3 explains how Henrietta Lacks died of cervical cancer in 1951 at age 31. After her death, a biopsy of her tumor was taken for research purposes. As a poor, black woman she was treated in a public hospital ward, where it was common practice for medical researchers to conduct research on patients since they were being treated free of charge. The researchers discovered that Henrietta’s cells were different and the first ever immortal cells were grown in a laboratory. These cells were mass produced and passed on to other researchers that eventually won Nobel Prizes, however, Henrietta’s family still lives in poverty and have never received any benefit or recognition for Henrietta’s “contribution to science” (Thomas, et al. 254). Is it fair that Henrietta’s cells were taken in the first place and that her family has reaped no positive outcomes from the process?
While reading Beauchamp and Childress’s section on “Vulnerability, Exploitation, and Discrimination in Research”, I tried to find the answer or rather some logic as to how the principle of justice was upheld or broken. While vulnerable groups include elderly, prisoners, poor people, and pregnant women, the dead was never mentioned. As Beauchamp and Childress say, “‘Vulnerable’ is an inappropriate label for any class of persons when some members of the class are not vulnerable in the relevant respects” (267). When dead, you no longer get to make decisions for yourself and this applies to all “members of the class”, so does this make dead patients a vulnerable population? I guess you could say that some patients make specific arrangements prior to their death as to what they do and do not want to happen to their body, but not everyone has this luxury of time or choice. Back in 1951, I have a feeling that Henrietta did not think about what might happen to her body if and when she died. Would she have been willing to donate her body to research and the development or science? As discussed in an article by CNN, there are many possibilities and uses for your body after you die, such as donating your organs, leaving your body to a body farm, and even becoming a crash test cadaver, the options are endless for you to choose. However, Henrietta seems to have never been given a choice. Just because it was 1951 does not make it acceptable for researchers to take Henrietta’s cells and later on provide no recognition or benefit to her “contribution” to science.
After reading Henrietta’s case, I was curious to see if Henrietta or rather her family ever received any compensation or acknowledgement. An article from NBC News described how in 2013 the NIH was finally “making good with the Lacks’ family”. A new agreement was arranged so that Henrietta’s genome data would only be available to those who applied and were granted permission. In addition, two representatives from the Lacks family now serve on the NIH group responsible for reviewing biomedical researchers’ applications who are requesting access to the cells. Any researcher who uses the data is also asked to include an acknowledgement to the Lacks family within the publication. Along with not receiving any financial compensation, it seems incredibly unfair to Henrietta and her family that it took over 60 years for them to gain recognition for a contribution that she never had a say in to begin with. Even though this discovery has been helpful in creating vaccines against polio and other research, permission from Henrietta or her family was never even considered because she was a poor, black woman in 1951.
Works Cited:
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York: Oxford UP, 2009, 2013. Print.
Caplan, Ph.D. Art. “NIH finally makes good with Henrietta Lacks’ family – and it’s about time, ethicist says.” NBCNews.com. NBCUniversal News Group, 07 Aug. 2013. Web. 07 Apr. 2017.
Cohen, Elizabeth. “Ten uses for your body after you die.” CNN. Cable News Network, 28 Oct. 2010. Web. 07 Apr. 2017.
Thomas, John, Wilfrid J. Waluchow, and Elisabeth Gedge. “Case 7.3: Who Owns the Research? The Case of the HeLa Cells.” Well and Good: A Case Study Approach to Health Care Ethics. Peterborough, Ontario: Broadview, 2014. 222-28. Print.
Hi Rylee!
I thought your post was very interesting! I agree that it is unfair that she her recognition was so delayed and that her family never received financial compensation. This case reminds me of The Nuu chah nulth Nation where the researchers took their blood and once their blood was not needed for their research, the researchers distributed it out to other places and won awards for their studies, all the while not consenting to do so from the original tribe. In both cases, they took advantage of a “vulnerable population” and exploited them without financial compensation, consent, or in Henrietta’s case, recognition.
Works Cited:
W&G Case 9.1 “The Nuu chah nulth Nation and Arthritis Research,” pp. 289-292
Hi all,
I wanted to start off by saying that I agree with the both of you on how the way in which the Lacks family was treated was very unfair. I too think that even though Henrietta died, her family should have been given the ability to consent or decline research to be conducted from samples taken from her body, and that 60 years is way too late to receive any kind of acknowledgment. Thus, I feel the family should have been compensated a good sum of money as reparation for the researchers poor decisions. However, I do think that now giving them ability to accept or reject research pertaining to the samples is a good step on the part of the researcher.
But also, Rylee, I feel like you give a good point of how this case can show how underrepresented peoples, like minorities, have a great chance to be exploited in the medical field. And that there should be more transparency between the hospital, staff, and families/patients. I think that if cases like these were to continue to go unpunished or not talked about, then more people would be at risk of being taken advantage in these situations.
-Arianna E.
Hi Arianna,
In your comment you stated that the Lacks study highlights the exploitation of minorities in the medical field. While I am not trying to argue that minorities have not been taken advantage of for use in medical research, I don’t think race is a significant factor in the Lacks study. When asked by Terry Gross, host and co-executive producer of Fresh Air, if Lack’s cells were obtained as a standard procedure or for experimental use Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, responded “standard” saying that “they were taking cervical cancer tissues from any woman who walked into Hopkins with cervical cancer, and this was absolutely the standard treatment. And, in fact, it was considered the sort of top of the line.” Sure, you could argue that the “standard” procedure was routine at Hopkins Hospital, the only Hospital that would see Lacks, but I still believe that the actual procedure was not triggered by race.
Noa
Coates, Ta-Nehisi. “Henrietta Lacks And Race.” Theatlantic.com. The Atlanta Monthly Group, 2 Feb. 2010. Web.
Hi there,
The HeLa cell line was established in 1951 from Henrietta Lacks, a working-class African-American woman living near Baltimore. The cells were taken without the knowledge or permission of her or her family, and they became the first human cells to grow well in a lab. While I acknowledged the lack of consent existed in this case, I feel it is also important for the scientific world to acknowledge the contribution Henrietta’s cells have made to the scientific world. The family should be given the right to accept or reject the continuation of the research on Herietta’s cell. if the family has reached the consent of permission, then the researchers should be able to pay reparation for the family. However, this would be against the supreme court’s ruling. According to supreme court, unmodified genes could not be patented. This would lead to further discussion in ways to make up for the family.
Open discussion with the family about the situation would always be appreciated considering the development of a polio vaccine, the discovery of human telomerase and countless other advances contributed by Herietta’s cell.
Hi Rylee!
I like your post on the story of Henrietta Lacks. I definitely agree with you that she was unfairly taken advantage of and her family was never fully compensated for the exploitation they endured. Its really sad that these types of situations happen far too often and especially to vulnerable people. This situation was also true with the Nuu chah nulth Nation who were similarly taken advantage of. Their genetic material was exploited for the researchers gain. There is a dichotomy here that plagues many scientists. The decision of what to do when a fantastic scientific discovery is made but it is made illegally. Through stories such as these it seems that scientists choose to publish and continue with the research dispute the individuals it may offend. This decision is ethically flawed. The scientists would not have the data in the first place if it weren’t for these individuals so any agreements should therefore be respected. In terms of Henrietta’s case, she wasn’t even made aware of the breach in ethics until after her death. This then caused thousands of scientists to profit on her genetic material without her or her family being rightfully compensated for it. The lack of consent and illegality of the situation is baffling especially since it went on for so long. In future cases, scientists need to better uphold the contract, which bind them to respecting the subjects who are so gracious enough to participate in their research. Hopefully going forward situations such as these are few and far between.
Works Cited:
W&G Case 9.1 “The Nuu chah nulth Nation and Arthritis Research,” pp. 289-292
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford UP, 2001. Print.
Thomas, John E, et al. “Case 2.2: Social Determinants of Health.” Well and Good: Case Studies in Biomedical Ethics, Broadview P, 2014.