The story of Henrietta Lacks is intertwined with many bioethical complexities. In 1951 Henrietta Lacks, African-American mother of five, was suffering from cervical cancer. She lived in Baltimore and therefore was treated at John’s Hospital, where treatment for African-Americans was less than sub-par. After her death, Lack’s cells were taken into the lab to study the mechanisms behind cervical cancer. At this moment in the story it is evident that something has gone wrong here. No consent for this was ever agreed to by Henrietta or her family. The scientists were never given permission to harvest Henrietta’s cells or exhibit scientific experiments on them. To their surprise, the scientists found that the cells were extraordinary. They reproduced rapidly and resiliently making them the first human cells successfully grown in a lab. These cells went on to be mass produced and distributed around the scientific community. These cells were used in research that saved lives and is widely recognized as a significant contribution to science yet her family has received no compensation. Henrietta Lack’s family can’t afford to see any doctors despite their relative’s significance to the field.
The dichotomy here is between justice and the greater good. Overall, Henrietta Lack’s cells were apart of research that was used to eradicate polio; they did a great amount of good for the population. The question is whether that outweighs the unfairness with which her family was treated. Is it even ok that the scientists took the cells to begin with? Does that fact that the scientists made a remarkable scientific discovery that saved lives, outweigh the injustice experienced by Henrietta Lack’s family? In modern day medicine, all of this would need to be justified with a sign consent form and I believe that is necessary. I believe that consent and jurisdiction needed to be given by the family in order for the scientists to remove the cells and undergo tests on them. The fact that the family was completely ignored through the whole process goes against the theory of justice.
In John Rawl’s book, The Theory of Justice, he discusses the two fundamental principles of justice. The first states that all individuals have the same basic liberties. The second states that social and economic positions should be open to all. In this situation the first principle is not respected. The same basic liberties of other patients were not respected in this case. The same basic liberties of other families were not respected in this case. In this situation it also seems like race player a role. In Baltimore at this time, Blacks and Whites didn’t receive the same levels of respect especially in terms of healthcare. The scientists may have taken further advantage of Henrietta Lacks because she was a Black woman. Overall it is clear that injustice was done on Henrietta Lacks and her family.
In my opinion despite the greater good that came out of the discovery of her cells, it was not right for the scientists to exploit them without any permission.

Works Cited:

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford UP, 2001. Print.

Rawls, J. (2013).A theory of justice. New Delhi: Universal Law Publishing Co Ltd.

Gedge, E., Waluchow, J. W., & Thomas, J. (n.d.). Who Owns the Research? The Case of the HeLa Cells. InWell and Good: A Case Study Approach to Health Care Ethics(4th ed.). Broadview Press.

This article by Terrance F. Ackerman describes the two, sometimes clashing, notions of patient autonomy and physician interference. Patient autonomy is a necessary staple in the doctor patient relationship. It needs to be considered when dealing with patients when it comes to a multitude of scenarios including sharing information, deciding treatment plans, prescribing prescription medications. Ackerman defines patient autonomy as having two key features. The first of those being that: “autonomous behavior is governed by plans of action that have been formulated through deliberation or reflection” (Ackerman, 1982). The second is then stated as: “autonomous behavior issues, intentionally or voluntarily, from choices people make based upon their own life plans” (Ackerman, 1982). These two stipulations are important but can be impeded by certain constraints described Ackerman. These constraints can be physical, cognitive or psychological. Doctors are required to respect autonomous patients however what happens when a patent is constrained by a number of factors in terms of making logical decisions? This is where physician interference comes in.
Non-interference is the physician’s role in patient decision-making. This topic can be difficult to balance with autonomy. Where is the line in which a doctor’s opinion is helpful rather than pushy and unnecessary? Is it possible for non-interference to respect patient autonomy? This also raises the question about how much say should doctors have in medical decisions their patient’s make. Also is that say hindering patient autonomy?
I think these questions can be assessed in a case-by-case basis. While physician interference isn’t welcomed in all cases, I think its necessary in certain situations. I think it’s important for a physician to inform the patient on certain risks or probabilities from the biological standpoint. In terms of certain diseases, the doctor comprehends the course and should inform the patient on the reality of the situation and what they believe is best. For example if a patient is diagnosed with a rare disease, it is the doctors obligation to help provide the patient with the necessary information in order for them to be able to make coherent decisions regarding their medical care. A doctor should no attempt to guide a patient towards a course of action they believe is best, but they should provide the individual with essential information to decide for themselves. Another case would be one in which a patient’s competency is in question. This goes back to Ackerman’s discussion of constraints that impede patient autonomy. If a patient is incapacitated due to physical, cognitive, or psychological constraints then self-governance is obstructed. This is a time when a doctor must interfere in order to make a decision for the patient. In other situations the line is more blurred. A patient’s decisions must be respected and taken seriously by the physician. I think the physician should be able to weigh in on the decision and should be available to answer any questions the patient may have but in order for autonomy to be unharmed, the patient must reach a decision on their own terms.

Works Cited:
Ackerman, T. F. (1982). Why Doctors Should Intervene. The Hastings Center Report, 12(4), 14. doi:10.2307/3560762

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford UP, 2001. Print.

Dilemma:

Stephen Dawson is a severely mentally disabled seven-year-old who was born prematurely in Canada. Ever since he was two he has been rapidly declining in health and currently he needs 10 hours of daily care to live. He cannot eat, take medicine, or do any of his basic needs by himself. Currently he is in need of a critical surgery in which a shunt has to be placed in Stephen’s brain in order to drain out excess cerebro-spinal fluid. Initial Stephen’s parents consented to the surgery but the next day they decided against it. They believe Stephen’s life is painful and unhappy and that the boy deserves to die in peace. Immediately after this decision, the superintendent of family and child services decided to get involved in order to assume custody of Stephen. They filed a petition for temporary custody, which was ultimately granted. How was this decision made? Was it right for the parents to lose autonomy over their own child? Who should have the authority to make the decision over those not competent to make healthcare decisions themselves?

Discussion:

This situation has a range of issues to be considered. For one the quality of the life of the child is an important aspect of this case. In testimonies by the parents, it is stated that Stephen has to be forced to eat, chew, and take medication. This child also has a severe seizure disorder as well as being blind and largely unresponsive to the world around him. Stephen’s family spends an average of 10 hours taking care of him a day along with having two other children around the same age. It is evident that Stephen’s quality of life is largely compromised and has been reduced to him having little to no control over his life. Secondly I think of the distinction between extraordinary and ordinary in terms of the surgery that is needed. Is this surgery largely unneeded and only a temporary Band-Aid to Stephen’s many mental disabilities or a life saving treatment that is going to ameliorate Stephen’s quality of life? Is this an extraordinary intervention or an ordinary treatment along with many of Stephen’s other medical aids? As decided by the judge, the surgery is largely extraordinary and is stated by Judge Bryne would “constitute cruel and unusual treatment of Stephen” (Thomas et al., 2014).
Using this information and the ethical concerns discussed above, I would agree with the parents in deciding that the surgery is not necessary and Stephen should be allowed to live out the rest of his life peacefully. I also think that it should be the parents’ decision to make. While it is true that the doctors and medical staff understand the technicalities of Stephen’s condition and the intricacies of the surgery, they still shouldn’t have autonomy over Stephen. The clinical stuff should be able to consult the parents on the decision as well as give them advice but they shouldn’t have autonomy to decide the fate of another person’s child.
The decision to withhold treatment for a child should be a deeply thought out and acknowledged from all angles. The staff at the foster home in which Stephen spent some time, Sunny Hill, felt as though he experienced happiness to the environment around him. The professionals at this center found Stephen to be, “a happy little fellow despite his handicaps” (Thomas et al., 2014). This shows that maybe Stephen needed to be in a more stimulating environment in order to show more of a response or improvement. This picture is different from the one depicted by Stephen’s parents. I think it is important for his parents to consider this narrative and thoroughly understand the risks and benefits of the surgery. If in the end they were to decide that withholding treatment is what is best for their son, then I think that decision should be respected.

Works Cited:

Thomas, John E., Wilfrid J. Waluchow, and Elisabeth Gedge. Well and good: a case study approach to health care ethics. Peterborough, Ontario: Broadview Press, 2014. Print.

Bioethics post #1

Dilemma: Dr. Sandra Selleck was conducting a research study on the effects of an Alzheimer’s drug called THA, which has the potential to slow the progression of Alzheimer’s disease. In search of participants in her study, Dr. Selleck reached out to a large regional nursing home St. Mary’s. She knew the sample would include many patients eligible for her study and wanted the opportunity to visit the home to interview patients for the study. Dr. Selleck discussed the inclusion criteria of the study with St. Mary’s director Ann Wilson, which included patient consent, consent from the patient’s closest relative, and no objections from the care staff at St. Mary’s. Dr. Selleck stressed the importance of competency of the patients in terms of enrollment in her study. After hearing this proposal, Ann decided she didn’t want any of the individuals at St. Mary’s to be enrolled in the study. She felt as though the study was exploiting elderly people and treating the patients as guinea pigs. Dr. Selleck was surprised at this response since her study had been reviewed by many ethics boards and was given considerable endorsement. Was Ann right to turn down Dr. Selleck’s request? Is Dr. Selleck’s study exploiting a vulnerable elderly population?

Discussion: I think there are many important questions at play here. For one I think the concept of patient autonomy and competency in Alzheimer’s populations is a difficult situation. Alzheimer’s disease is a progressive disease that causes a decline in memory and other mental faculties. A patient is not always lucid and therefore can’t always be deemed mentally competent. This makes it difficult to decide whether a patient has autonomy in something such as a medical trial. This then brings into effect the importance of the patient’s closest relative, clinical staff at St. Mary’s, and any doctors that may be treating the patient. Alzheimer’s populations are especially vulnerable groups but should they be given the chance to participate in a potentially lifesaving trial? How can their competency be judged? I believe to a degree that enrolling elderly Alzheimer’s patients in a clinical trial based on competency has some level of exploitation but this must be weighed with the notion of ‘do no harm’. If there is a potential drug on the market that could help a patient live for a couple more years or save the lives of future victims, then the line blurs a bit. The question is whether Ann is protecting the patients or keeping them from a lifesaving drug. This also brings up the question of whether this decision is rightfully Ann’s to make for the entire population of St. Mary’s. A decision such as this should be made by the patients at the home, the close relatives to those patients, as well as the doctors closely involved in the cases of these patients. As much as competency can be questioned, it is still the patients and their governing body’s decision about whether to participate in a situation such as this. The patients have a right to be informed on the study and then make the decision for themselves about whether to participate. These patients deserve a voice and Ann is taking that away from them. A balance has to be reached between respecting patient autonomy and nonmaleficence. These individuals deserve a discussion in their own treatment while at the same time having a governing body that is accounting for the vulnerability of Alzheimer’s patients. This brings into question whether Ann is really protecting them by not allowing them to participate in this study.

Works Cited:

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford University Press, 2001.
Mayo Clinic Staff Print. “Alzheimer’s disease.” Overview – Alzheimer’s disease – Mayo Clinic. N.p., 22 Dec. 2015. Web. 21 Jan. 2017.

Thomas, John E., and Wilfrid J. Waluchow. Well and Good: Case Studies in Biomedical Ethics. Ontario: Broadview Press, 1987.