Or just no exploitation period.
This week we read about the infamous case of Henrietta Lacks, a 31 year old cancer patient who upon passing away had her cells stolen from her without her consent or knowledge. In addition, her family was never informed that their beloved one’s cells were being used in research labs. Most importantly, after years of secretly conducting research on Henrietta’s cells, also known as HeLa cells, researchers have won numerous Nobel Peace Prizes and launched the multibillion dollar cell culture industry. Meanwhile, Henrietta Lacks family has never received any compensation for having their beloved ones cells exploited, nor have they seen a single cent of the profits earned from this research. No matter the amount of good things research on HeLa cells has done for the world, there is no excuse for why Henrietta’s family has not yet been compensation for this deception.
In the passage, “Vulnerability, Exploitation, and Discrimination in Research”, Beauchamp and Childress address three problems involved in enrolling the economically disadvantaged in research: 1) undue inducement, 2) undue profit, and 3) exploitation. Under inducements include monetary payments, shelter, and food and are considered unduly large and irresistible payments. In contrast, undue profits are when “subjects receive unfairly low payments, while the sponsor of the research gains more than is justified” (Beauchamp and Childress, 269). One could argue that it would be unethical for a researcher to approach a subject who is weak and constrained by their poverty, and thus more likely to be coerced into being a research subject with menial benefits. The compensation offered could be so little that it is viewed as exploitative. Contrastingly, monetary payments could be unduly large and irresistible and be seen as coercive or as a form of bribery. Therefore, after reading this passage from Beauchamp and Childress, I have concluded that there is no real solution for how one can determine a method of payment or reimbursement that is nonexploitative.
One simple solution could just be to not exploit subjects in the first place; the Lacks’ doctors could have just informed the Lacks family and received their consent. I think an even better solution would be to ask research subjects how they would like to be compensated. Obviously the subject would not be allowed to make an outrageous request like ask for $1 million dollars. For example, say a homeless person was recruited for research, if the person requested 1 meal and shelter for a night, the researchers should ablige their request. Better yet, for low income subjects, researchers should say, ” Even if you decide you will not do this study, we will still offer you shelter, food, money, etc. just for your time.” This would show the subjects that the researchers are sincere in their endeavors. But I think the best solution would be to allocate more money to fix entire low-income communities so that the issue being an “economically disadvantaged” person is resolved completely.
Ultimately, in the case of Henrietta Lacks’ family, where billions of dollars has been raised off of the research done on Lacks’ cells, there is no reason why Lacks’ family should still be poverty stricken with no access to healthcare themselves. It is unfortunate that no justice has been served, and I am curious to know why no legal action has been taken against this case. Even if Lacks’ family cannot afford to finance a lawyer, it is appalling that no one, not even the many researchers who have profited from this deception nor a generous lawyer willing to offer their time to the case have come forth to at least help Lacks’ family gain the compensation they deserve.
Works Cited
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press, 2013. Print.
Thomas, John, Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study Approach to Health Care Ethics. 4th ed. Peterborough, Ontario: Broadview Press, 2014. Print.
While you do raise an excellent point that the family deserves to be informed and asked to use there loved one as a subject for research. I disagree with your statement that “Obviously the subject would not be allowed to make an outrageous request like ask for $1 million dollars”… Im not sure why you think a million dollars is an outrageous request, if the research done profited billions of dollars? Are you saying because the family is impoverished the amount of money they should request should be in range of their own income? I find that to be quite discriminatory, as discussed would represent a undue profit which as you described are when “subjects receive unfairly low payments, while the sponsor of the research gains more than is justified” (Beauchamp and Childress, 269). In conclusion they family should be award monetarily based on the profit acquired for the use of their family member.
No I’m not saying that $1 million dollars would be outrageous in the Lacks family’s case. I’m saying in general, if for example a researcher wanted to do a cheek swab, and the subject asked for $1 million dollars in exhange, then that would be outrageous.
I agree with you in that exploitation is morally wrong and should not be done. Especially in Henrietta’s case where her cells were stolen, she never gave any form of consent, and her family was completely unaware any of this had taken place. The best course of action that I believe can be taken is to gain consent beforehand. The doctors should not and cannot be allowed to do something like take someone’s cells without that individual’s consent, or someone representing them. However I disagree that an even better solution would be “to ask research subjects how they would like to be compensated,” I think something like that would only take us down a very slippery slope. You cannot let people just come up with numbers and compensation off the top of their head – there is way too much variability in doing so. I believe that a more realistic method would be to have a previously set standard of compensation. I realize that this standard of compensation would most likely be unfair to participants or volunteers in different economical situations – however, those that are “well-off” probably wouldn’t consent to something like this in the first place unless they simply wanted to do it “for the benefit of science and society.” So if we are looking at the population of homeless people, their compensation should be the same no matter which person is giving consent – leaving it up to them to decide will only cause a mass of problems.
This case reminds us of the early fifties when there was no respect for autonomy, personal privacy, and the necessity of obtaining informed consent before any medical research. Definitely, this case today is an indefensible exploitation and violation of Henrietta’s autonomy, personal privacy and the principle of justice. It is true that the physicians’ intentions in conducting such research will provide beneficence for many people. Furthermore, it is equally true that it also didn’t harm Henrietta or caused her pains as the cells were withdrawn from her tissues after her death. In that era, it was believed that “it was reasonable for medical researchers to conduct a research on patients who were treated free of charge” (p. 254); however, all the above factors do not outweigh the violation of justice and morality. Doctors should have morally felt obligated to inform the family of Henrietta of their intentions to withdraw some of Henrietta’s cells for research and compensate them financially, especially since they were deeply in need. According to me, when you take something that isn’t yours without permission then you are stealing regardless if you have good intentions or think it is reasonable to do so. Simply they were thieves who stole Henrietta’s cells even if they had good intentions, just like any thief who steals to bring food for his family. If Henrietta was treated for free, this doesn’t allow the doctors to exploit both Henrietta and her family. Henrietta was exploited by being not informed, as well as, the cell’s identity didn’t remain anonymous but labeled as HELA cells. On the other hand, her family was exploited by being not financially compensated for Henrietta’s cells not even after the identity of the cells were disclosed. Conscience, morality and humane principles should govern doctors’ actions regardless of the rules and laws.
Gabrielle,
I too was curious as to why no justice has been served and decided to look up similar cases brought to court. Apparently there was a Supreme Court of California case, Moore v. Regents of the University of California, that also involved the patenting of a patient’s cell line for commercial use without consent of said patient. The plaintiff was a cancer patient at U.C.L.A’s Medical Center who was being treated for hairy-cell leukemia. His doctor, Dr. Golde, removed blood and other bodily fluids from Moore over the course of his treatment and, without his consent, eventually created a cell line that he patented for commercial use from Moore’s cells (CaseBriefs). Although this case was brought to case in 1990 and the a requirement for informed consent in drug testing was made law in 1962 with the Kefauver-Harris amendments (NIH), the court ruled that an individual’s cells and discarded tissue are not their property and can, if patented, be commercialized. It is shocking to me that the court ruled that even individuals that are alive have no legal rights to their own cells. I wonder if a similar case were to go to courts in the present day (assuming the aforementioned law was not established) if the ruling would have been the same.
Sources:
http://www.casebriefs.com/blog/law/property/property-law-keyed-to-cribbet/non-traditional-objects-and-classifications-of-property/moore-v-regents-of-the-university-of-california-2/
http://history.nih.gov/about/timelines_laws_human.html