The case of Henrietta Lacks and the HeLa cell line derived from her cancerous cells following her death without her or her family’s consent raise numerous ethical dilemmas such as: Should the patient’s name be protected? Should the patients have to give consent? Was it right to take the cells from Henrietta Lacks? While some of these dilemmas are comparatively open-and-shut, some are more nuanced and messy to solve. The issue of identity protection has already been addressed as current cell lines are anonymous, and I tend to agree with this idea. The Lacks family was  unwillingly subjected to invasive attention as the scientific community were wide-eyed at the idea of the first in vitro human cell line for research purposes. This could have been prevented, had they not named the cell line after the patient. Yet before this question of identity protection is answered, the question of consent should have been an option decided by the family of Henrietta. Unfortunately, due to the practices at the time, research was conducted on patients in exchange for free healthcare with little regard for the patient’s consent. In addition to taking the biopsy of Henrietta’s tumor for research without consent, the family was not informed about how the cell lineage would be used in research. Though at the time, there was no way to accurately predict exactly how important this cell line would become. Sure, while the idea of a human cell line that is immortal and can survive in vitro sounds promising in the fact that researchers could finally study our species using the authentic species rather than a model of another species as done previously, the amount of research and discoveries using the HeLa cells could not have even been fathomed in 1951 when the sample was taken. The standards of today require consent to donate tissue samples from deceased patients for research which I tend to agree with because while these samples are tremendously helpful in advancing healthcare, you cannot just go around taking chunks out of deceased people without the discretion of their family. Interestingly, the Human Tissue Authority states that consent is not required for living patients if the sample is anonymized which I guess is because a living patient can grow the cells back while a deceased patient is unable to do so. In regards to the question of whether or not it was right to take the cells from Henrietta, there are two major factors that come to mind when weighing out this dilemma. The first being the ethical aspect of taking a tissue sample to then pass out around the world for research with no regard for the source of the sample. Not only was it ethically wrong to take the sample without consent, it was ethically wrong for the pharmaceutical companies to acquire profits in the millions if not billions off the mass production of HeLa cells with none of it trickling down to the poverty stricken family of which the sample originated.With out this sample, it is possible that the advancement of healthcare could have been significantly mitigated. The second factor in addressing whether it was right to take the tissue sample, is the numerous innovations in the field of healthcare due to the HeLa cells such as the polio vaccine and cancer treatments. From this perspective, I would have to say the needs of the many outweigh the consent of the few. While it may have been ethically wrong to take the sample and ship it across the world,I see it as a necessary act that progressed the field of healthcare to where is it today.

Works Cited:

1. “Donating Your Tissue for Research FAQs.” Human Tissue Authority. N.p., n.d. Web. 07 Apr. 2017.
2.  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. Web.

Terrance Ackerman’s response to Childress and Beauchamp’s idea of autonomy attempts to address the notion a physician’s interference with a patient’s decisions that may exhibit impaired autonomy when under the effect of an illness. In my perspective, this is necessary when attempting to ascertain the level of autonomy which may influence the weight of their choice in the matter. In his essay, he highlights a quote by Childress and Beauchamp, that states, “To respect autonomous agents is to recognize with due appreciation their own considered value judgments and out- looks even when it is believed that their judgments are mistaken.” This ideology leads to the noninterference of physicians into the personal matters of the patients. While for many cases this may be viewed as morally correct, Ackerman proposes a concept that contradicts this moral answer of respecting autonomy. What if an illness eventually begins to impede the ability of the patient to competently make a decision that reflects his or her life goals? It would not seem ethical to allow a patient to cause themselves harm in due to a decision that was the consequence of the illness. For example, this situation was similarly addressed during our midterm with the case of a female not wishing to die yet refusing to consume food due to her condition of anorexia. On one hand, you could respect her autonomy and conduct noninterference policy by allowing her to waste away, yet you violate her life goals by permitting her death. On the other hand, you could overrule her autonomy by interfering with her choice of treatment, yet this view corresponds with her life goals. Since anorexia nervosa is as much as a neurological disorder as an eating disorder, allowing an incompetent decision that is dictated by the disorder could cause detrimental damage to the patient whom may not have been fully aware of the consequences in addition to contradicting their life goals. While Beauchamp and Childress’s idea of noninterference may be applicable in some instances of a competent and autonomous patient, perhaps a concept similar to Ackerman’s idea of a physician’s interference to promote return of control could be more useful in supporting patient life goals whose judgement is clouded by the illness that affects them.

Works Cited:

1. Ackerman, Terrence F. “Why Doctors Should Intervene.” The Hastings Center Report 12.4 (1982): 14-17.
2.  Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford UP, 2001.
3. Thomas, John E., and Wilfrid J. Waluchow. Well and Good: Case Studies in Biomedical Ethics. Ontario: Broadview Press, 1987

Dilemma:  

Stephen Dawson is a severely mentally challenged seven year old kid that requires a simple yet critical surgery. His parents give their consent for the surgery at first, yet after a day, they have a change of heart and decide to refrain from the surgery in an effort to end his suffering. After learning this, the superintendent of family and child services decided to take the case to court where custody was granted to the parents. Following a petition to the case, custody was then temporarily granted back the superintendent where the surgery was performed. Was this right? Who should decide on Stephen’s life?

Discussion:

I tend to agree with Justice Mckenzie in granting the custody of Stephen to the superintendent and promoting the life-preserving surgery. From my perspective, the parent’s decision to not consent for the surgery seems to be an effort to ease their suffering, not Stephens. Stephen is seven years old and only remained at home with an over stressed family attempting to take care of him for approximately two years. After which, he went to Sunny Hill, is a place equipped for caring for disabled children, only to be moved a year later to a foster home where the parents were told he was taking up space. He remained at that foster home for three years, until he was returned to Sunny Hill. So Stephen has spent nearly half his life in places where he was seen as a stagnant burden which may have had a negative impact on Stephen’s quality of life, yet there is some sunshine in this story. During his time at Sunny Hill, they experience a new side of Stephen that shows potential by responding to certain stimuli such as smiling at people, clapping his hands, and turning on a fan. Additionally, it is completely possible that the perspective of the parents in regard to the happiness of Stephen’s life does not accurately match Stephen’s perspective of happiness as well. Since his brain functions differently, perhaps his idea of happiness is different from ours as well. The two perspectives of Stephen paint two vastly different pictures of him. On one hand, we have a non-responsive child involuntarily clinging to life, and on the other hand, we have a child that shows promise and exhibits happiness.

I tend to think these conflicting perspectives are due to the conflicting environments Stephen was subjected to during his life. During his time in the foster home, his care was noted by the parents as sub par. In addition to this, his parents themselves complained about being unable to provide proper care for Stephen which was their reasoning for placing him under the care of Sunny Hill initially. While I do not question the parent’s values for initially placing him under someone else’s care, I do think that leaving him in the foster home with low quality care was a poor choice. The case does not list any financial drawbacks of Sunny Hill to explain Stephen’s presence in the foster home, so I wonder why he was not placed back into Sunny Hill if he seemed to have good experiences there. Nevertheless, a facility fully equipped to care for mentally challenged children is a vastly superior environment for growth compared to a overstressed home or an apathetic foster home. If Stephen actually exhibits qualities of happiness at Sunny Hill, then his care should continue under their supervision. 

Works Cited:

1. Thomas, John E, et al. “Case 6.4 Stephen Dawson: Should Severely Mentally Challenged Patients Be Treated?” Well and Good: A Case Study Approach to Health Care Ethics, 4th ed., Broadview P, 2014, pp. 229-235.

Dilemma:

A researcher is attempting to conduct an experiment of a new Alzheimer’s drug that may reduce progression of the disease. According to the chemistry of the drug, the experiment calls for patients that may experience varying degrees of competency. To enroll a patient in the experiment, a patient must have written consent from the patient’s closest relative and healthcare staff in addition to his/her own. The patient must also be deemed competent, but if they are intermittently competent, the patient may be excluded from the trial. The director of the nursing home then responds to the researcher by not allowing any of the nursing home patients to be included in the experiment so that the vulnerable group is not exploited(Thomas). Was the director right in her choice of refusing the experiment all together?

Discussion:

Working through the case of whether or not elderly Alzheimer’s patients should be able to participate in an experimental drug trial raises numerous tricky questions that seem to have no precise answer. The question of consent is perhaps one of the trickiest dilemmas we face, and this case starts with three parties (the elderly person with Alzheimer’s disease, the family of said person, and the director of the St. Mary’s Nursing home) potentially being involved with the consent of one party. The end result of the director taking responsibility over consent of the elderly patients and denying participation of all patients was one I thought was not exactly the best course of action here. I can see her side of wanting to protect the patients from being overstressed or taken advantage of, but I also see her taking the freedom of those competent enough to possibly assist in production of a drug that could treat the very disease affecting them. I believe that choice of being included in the experiment should be mostly determined in the competent mind of the patient with minor focus on family choice assuming that the current physician of the patient confirms the competency as well. A competent patient affected by Alzheimer’s being denied the chance to aid in research that could treat Alzheimer’s could easily be compared to shooting yourself in the foot, yet in this specific case someone else is holding the gun. The very thing that could lead to better treatment of Alzheimer’s is being inhibited at the choice of someone other than those affected by it.

The major problem with determining consent is the definition of competency used, which leads me to the point of discussing a competency continuum in exchange for the quantized two choice system that is used as mentioned in the book. The fact that the patients are in varying stages of Alzheimer’s should intuitively lead to a varying degree of competency, and to group them into groups of incompetent or competent would be too simple.Though a continuum to match the gradient of competency might better suit the ethics of the experiment’s design, ultimately, the patient is still going to be grouped into two groups of either being in the experiment or not being in the experiment. While this competency continuum may be more practical in the ethics of healthcare treatment such that patients receive varying degrees of treatment, I do not see a real use of dividing the subsets of Alzheimer’s patients only to reduce them back into a two choice system. It is not as if the differing classes of competency will receive differing levels of participation in the drug trial; it is either the patient is in the experiment or not. In this case it would seem to create a special class for elderly patients who just want live a normal life and not one of being burdensome. In summary, I believe the nursing home director overstepped her authority such that competent elderly patients could not have a voice in their participation in the experiment even with competency confirmed by healthcare staff and family.

References:

1.Thomas, John E, et al. “Case 3.2: Nonconsensual Electroconvulsive Therapy.” Well and Good: Case Studies in Biomedical Ethics, Broadview P, 1987. 62-94.