The Well and Good Case 7.3, “Who Owns the Research? The Case of the HeLa Cells,” seems to me to be a clear case of unjust exploitation of a marginalized family. In the case, a poor African American woman dies of cervical cancer, and upon her death her tumor cells are taken and reproduced for science. As a result of the cell reproduction, many scientists and pharmaceutical companies made lots of money, but the family of the deceased woman saw none of the money.

In their book on medical ethics, Beauchamp and Childress present several theories of justice. The most appropriate theory of justice to apply here is the egalitarian theory of justice, which “emphasizes equal access to the goods in life that every rational person values, often invoking material criteria of need and equality” (Beauchamp and Childress 252). In this case, there is a clear good in life that every rational person values but not every rational person involved in the case got: money.

Henrietta Lacks, the woman whose cells started it all, was penniless at the time of her death, and after her death her family still lived in poverty. Years after the huge profits were made from her cells, her daughter was still in such a poor financial state that she was unable to pay to see a doctor. The doctors did so many things wrong in this case, and their actions were entirely unjust to both Henrietta Lacks and her family. First, they did not obtain her consent to taking her tumor cells and making money off them. While they tried to justify this action by saying that her treatment had been free, in my view, it is still clear exploitation to not expressly ask if her cells could be used for this purpose. Secondly, various companies made large profits from the cells of a person without compensating the person or her estate. These companies took a part of Henrietta Lacks and used it to make money without giving her or her family any share of the profits and without obtaining her consent to take the cells. That is exploitation and inconsistent with an attitude of justice. Finally, as mentioned before, there is an element of consent that is necessary here. Before using her cells to make money, the companies should have gotten the consent of either Henrietta Lacks or her family.

My central point here is that the goods were not distributed equally. A few greedy pharmaceutical executives made lots of money, and none of that money went to the Lacks family. The actions of the doctors and pharmaceutical companies were not just.

Another important aspect of this case was that the patient was an African American living during racial segregation. She was a member of a vulnerable population. As a society, we need to be extremely careful to ensure that vulnerable populations are treated justly. Every person needs to be treated with justice and equality, regardless of his or her ethnic or socioeconomic background. We have made great strides in treating vulnerable populations with justice, and we continue to make new innovations. For example, attached at the end of this post is a news report detailing how the influenza vaccine is being optimized for the elderly, a vulnerable population. While every innovation that ramps up protections for vulnerable populations may not be made in a scientific laboratory, the point is that there is hope for finding better ways to do things that provide justice and equality for all people, regardless of where they are coming from.

https://www.youtube.com/watch?v=xtvLrgk_WIg

Bibliography:

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press, 2013. Print.

The 1982 Hastings Center Report raises several important issues from across the spectrum of biomedical ethics that we have been discussing in this class. The most prominent issue raised in the article “When Doctors Should Intervene” by Terrence F. Ackerman is that of how autonomy is affected by illness. According to Ackerman, there are many ways in which illness diminishes autonomy. Illness can make a person mentally incompetent to make decisions, create social pressures that impact a patient’s course of decision making, or cause fear that also impacts a person’s decision making.

Ackerman then goes on to argue that a paternalistic intervention is justified in a situation where an illness impacts autonomy in some way. While I mostly agree with him, I do believe that there need to be some limits on physicians’ intervention in order to protect patients’ autonomy. While it is likely that illness legitimately affects a person in several ways, there is always the possibility that a patient has undergone a legitimate value change and truly, competently, and autonomously wishes to change his or her direction of treatment. Thus, physicians and surrogate decision makers need to be careful when dealing with issues of paternalistic intervention.

Ackerman suggests that the way to deal with these situations is to return control to the patients by explaining the relevant information in such a way that the patient can clearly understand what is going on and can make a decision based on that understanding. This is where I begin to take issue with his argument. One of the most dangerous things a physician can do for a patient’s autonomy is to explain information through different lenses. For example, a patient dealing with diminished autonomy as a result of severe anxiety may still legitimately fear a certain course of treatment even if he or she was not being under the influence of anxiety. However, if a physician was to emphasize the good aspects of the treatment and downplay the negatives to try to get the patient to do what the physician considers to be the best course of action, then in my view, this physician has performed a hard paternalistic intervention that is unjustified.

The framing effect makes it extremely difficult to get information to a patient in an unbiased manner, and it is almost impossible to do so if the information is transmitted verbally. In my opinion, the best way to give information to a patient is to write it out on a paper and give it to the patient to read, and then give the patient the opportunity to ask any questions about his or her condition and plan for treatment.

This whole discussion reminds me of the case of Dax Cowart, which we discussed in class this past week. Cowart’s case was a case of paternalistic intervention by his physicians that he did not want. While the case can be made that the paternalistic intervention was justified on the grounds that he suffered a severe injury that ultimately led him to have depression and unjustifiably want to commit suicide, this was clearly a case of a legitimate value change that coincidentally coincided with a severe medical occurrence that could diminish autonomy. In addition to not accounting for this possibility, Dax’s physicians also failed miserably with their presentation of the information, as they inflicted him with severe pain under the guise of making him better. I would argue that he was worse off due to all of the pain and suffering associated with the treatments for his burns. As Dax’s case makes very clear, physicians need to be careful with their own evaluations of a situation and how they present information to patients about their own situations.

In Chapter 6 of Well and Good, the authors present two very intriguing cases regarding end-of-life issues and whether to allow patients to die. In the first case, Carole suffers from cardiorespiratory arrests and is incompetent to decide whether the physicians may take her off life support. Her son cites religious issues, in the form of a curse that has been put on him that will wreak havoc should he fail to return his mother to Jamaica before death, as his main argument to keep her on life support. The doctor should go ahead with the do not resuscitate order for several reasons. The first is that the son does not have the means, and is not in a situation to obtain the means, to travel from Canada to Jamaica in a reasonable amount of time, as he is unemployed and bankrupt. To allow the son enough time to get enough money to get to Jamaica would needlessly extend his mother’s suffering and divert precious medical resources away from others that need them. The doctors not only have an obligation to Carole, but also to all the other patients in the hospital. Carole’s prospects for recovery are nonexistent, as there is no hope for repairing her breathing muscles and she would die in minutes if taken off the respirator. While Carole may or may not be in pain, she is unaware of her surroundings and is not leading a fulfilling life in the hospital. Unless the son can get the money in a reasonable time frame and Carole’s treatment resources are not taking resources from other patients, the doctors have an obligation to the other patients to take her off the respirator.

The case that I thought was more interesting was the second one, in which 26-year-old John suffers from “the elephant man’s disease” and wishes to be euthanized. John is also on a respirator, and would most likely die very quickly if taken off it.  He is competent and not subject to any form of manipulation, and has decided that he wants to be euthanized. I would allow it.

The issue of death with dignity is an issue that arises from the debate between autonomy and the common moral belief of “do not kill.” Many people bring valid reasons to the “against” side of this debate, such as Dr. Aaron Kheriaty of UC Irvine. Dr. Kheriaty argues that people that wish for death are often doing so under the influence of severe, yet treatable, psychological issues such as chronic depression. He also argues that these patients feel that they are an undue to their caregivers and families. Finally, he makes the point that, in our society, people that do not have the resources to secure proper care to give them a comfortable hospice process may see euthanasia as their only option. See Dr. Kheriaty’s remarks here: https://www.youtube.com/watch?v=WGzXGOsNNt8.

While there are valid points against death with dignity, one cannot deny the moral inconsistencies it invokes. As Dr. Allan Saxe says in his TED talk (link: https://www.youtube.com/watch?v=B7ehf6CmG4Y), many states allow capital punishment, which is definitely non-consensual. So, why should they not allow consensual physician-assisted suicide that affects no other people whatsoever? The arguments against death with dignity would be stronger if those enforcing policies against it were morally consistent. However, they are not. A morally inconsistent authority does not have the right to impose inconsistent morals upon others, and the autonomy of a patient such as John, who is suffering greatly and is perfectly competent to decide for himself, must not be violated. As long as John is ruled to be psychologically healthy by a psychiatrist, he should be allowed to die.

In medicine, many of the moral issues that arise are based on different medical risks. Personally, I believe that it is the right of the patient to know any and all risks involved with his or her condition. However, the doctor from Well and Good Case 10.3 seems to disagree with me. In the case, the doctor failed to notify the patient of the risk of death because “in his view … death in such circumstances was rare enough that to mention it would unduly alarm patients” (Thomas, Waluchow and Gedge 300-301). Lo and behold, the patient died from the routine procedure that the doctor was to perform.

The failure of the doctor to notify the patient of the risk of death is unjustifiable for two main reasons. The most prominent of these reasons is that, as a human being with complete moral status (the patient was healthy and had no reason for anyone to question his moral status), the patient had the right to be alive. What follows from this is that the patient’s contemporaries have an obligation to not do anything that impedes on his ability to live without his express consent. In this case, the doctor did not obtain proper consent to do this procedure that threatened the patient’s life, no matter how minimal the chance of death was. While the doctor appealed to his professional morality code, which states that he did not need to inform the patient in order to avoid harming him by giving him unnecessary anxiety over the procedure, the doctor still had a common morality obligation to inform the patient that the risk of death was on the table. In my view, the doctor has violated common morality, even though he adhered to his professional morality.

The second major reason that the doctor’s lack of action is unjustifiable is that he clearly violated the patient’s autonomy. According to Beauchamp and Childress, “At a minimum, personal autonomy encompasses self-rule that is free from both controlling interference by others and limitations that prevent meaningful choice, such as inadequate understanding” (Beauchamp and Childress 101). The doctor has clearly violated every part of this definition. First, interfered in the patient’s decision-making by withholding information about the risk of death. Since information was withheld, it cannot be said that the patient had adequate understanding to consent to the procedure, as he had no knowledge of the full scope of the risks associated with the procedure. Beauchamp and Childress go on to write that “the autonomous individual acts freely in accordance with a self-chosen plan” (Beauchamp and Childress 101). While the doctor can say that he respected the patient’s autonomy by giving him the option to opt out of the procedure, he really did not. If I was in the patient’s position, and the doctor told me that there was a chance that the procedure in question could kill me, then I would very seriously reconsider undergoing that procedure.

This case reminds me of a similar situation that I found myself in a few years ago. When I was in high school, I had really bad acne, and my dermatologist prescribed a medication for me. I took this medication for several months, and it did little to alleviate my acne. A few weeks after stopping the medication, I remember talking to my mom, who told me that the medication I was on had a potential side effect of causing my eyes to become filled with fluid that could have impaired my vision. Of course, I was quite upset that the dermatologist had not told me this. Just like the patient in this case, I felt like my autonomy had been violated in a sense.

Bibliography

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press, 2013. Print.

Thomas, John E, Wilfrid J Waluchow, and Elisabeth Gedge. Well and Good: A Case Study Approach to Health Care Ethics. N.p., 2014. Print.