Background on Case

Henrietta Lacks’ case is one of the most famous cases involving non-consent and the argument over whose rights prevail. Henrietta died from cervical cancer at age 31, and a biopsy of her tumor was taken for the sake of research. Henrietta had not given permission for her cells (now known as HeLa cells) to be used for research, however this was standard in the 1950s. When researchers grew Henrietta’s cells in the lab, they divided every 24 hours and became the “most proliferated cells in history” (Skloot, p. 4). On account of this, HeLa cells were quickly passed along to other researchers and were soon being mass produced to test vaccines, such as for polio. However, the Lacks family was never compensated for Henrietta’s cells, and to this day they remain in poverty, and ironically enough, unable to afford to even see a doctor.

Argument Surrounding Protecting Patients’ Identities

While what happened in Henrietta’s case is unlikely to happen again due to the standards for providing consent, it is important to discuss the issues surrounding protecting patients’ identities. If we ignore the fact for now that Henrietta did not agree to her cells being used for research, did the researchers at least owe it to Henrietta’s family to keep her identity anonymous? While the researchers in this case nicknamed the cells HeLa and attempted to use fake names such as Helen Lane (Thomas et al., p. 255), it was not long before most of the world knew whom the HeLa cells had belonged to. Prior to the Lacks family even becoming informed that Henrietta’s cells were being widely used, they were being bombarded with publicity. If we are to respect anonymity and the right that a patient has to their own body, then the family should have been informed first of the use of HeLa cells prior to the public.

With the idea of justice, one of the primary components is respecting people’s choices. If we want to adhere to autonomy, and Henrietta was not able to give informed consent, then the most logical thing to do in the eye of justice would have been to ask the family. In order to respect autonomy, we now require informed consent. However, if Henrietta was not able to consent to her cells being used, it would have been most beneficent to inform her family and ask for their permission, and to keep Henrietta’s identity concealed. This practice has significantly improved with the mandate of HIPAA today.

Debate About Receiving Compensation for Research

Another line of argument comes from the idea of whether the Lacks family should have received compensation for Henrietta’s cells. It does seem unjust that the Lacks family neither a) gave consent for Henrietta’s cells to be used for research; b) were informed of their decision to use her cells for research and vaccination; c) not keep Henrietta’s identity anonymous; d) not provide any sort of compensation. If we look at this all together, the Lacks family was not treated through principles of nonmaleficience, as they were neglected in the decision making process and not treated fairly. Nowadays, individuals typically are compensated for participating in research. Money is often given to subjects as an incentive to get people to be in studies. Thus, it would seem logical that an individual who agrees for her cells to be used in research should receive compensation, and if she dies her family would receive the compensation on her behalf. It is difficult to set a price on the immense positive contribution HeLa cells gave to society, however the fact that the Lacks family is still so poor and received no compensation is completely unjust. So, there should have been some form of compensation or privilege given to this family that helped make science so much better.

One of the most important parts of justice to look into in this situation is the idea of decreasing vulnerability, exploitation and discrimination. The economically disadvantaged are often taken advantage of, and this is exactly what happened in Henrietta’s case (Beauchamp & Childress, p. 267). In order to be just and to eradicate any sort of exploitation of the vulnerable populations, a better method needs to be determined for there to be nonexploitative, fair payment for services.

Resources

Rebeca Skloot, The Immortal Life of Henrietta Lacks (New York: Corwn Publishing, 2010), 4.

Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics. New York: Oxford   UP, 2009. Print.

Thomas, John, Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study   Approach to Health Care Ethics. 4th ed. N.p.: Broadview, 2014. Print.

Background on Beneficence

Beuchamp and Childress describe beneficence as acts of mercy and kindness to benefit another person. Benevolence refers to the character trait or virtue when acting for the benefit of others. While some acts of beneficence are not obligatory, some forms of beneficence are obligatory. Although common morality does not have a principle of beneficence that requires extreme altruism, the principle of positive beneficence supports certain obligatory rules, such as:

• Protect and defend the rights of others
• Prevent harm from occurring to others
• Remove condition that may cause harm to others
• Help people with disabilities
• Rescue people in danger

Beneficience differs from nonmalefience in that the idea is to present positive requirements of action as oppose to prohibiting negative actions, as well as not needing to be impartial or provide reasoning for these positive actions. David Hume argued that the obligation to benefit others in society comes from social interactions: “All our obligations to do good to society seem to imply something reciprocal. I receive the benefits of society and therefore ought to promote its interests.”

Summary of AZT Case

During placebo-controlled trials of AZT (azidothymidine) in the treatment of aids, a conflict arose over the questionable use of a placebo. In the initial trial, patients were given AZT to determine its safely. Several of these patients showed clinical improvement. On account of this, many people argued that since AIDS was fatal, everyone should be receiving AZT if it appeared to have possible positive effects. However, due to federal law regulations, more placebo trials would have to be done before pharmaceutical companies were able to produce more of the drug. For several months, some groups of patients were given AZT and some were given placebos, and those on placebos began to die at a significantly higher rate. A data and safety monitoring board (DSMB) would be charged to consider the impact of research on future and current patients. In the AZT trial, it would have been most beneficial to stop the placebo trial early on and make more of the drug for all patients who were suffering and died early.

Analysis

A great test for analyzing obligations of beneficence is found in policies of expanded access and experimental products such as medication. Beuchamp and Childress discuss whether it is morally acceptable or morally obligatory to provide an investigational product to a seriously ill patient if they cannot enroll in a clinical study. These programs are known as either “compassionate use” or “expanded access” programs. They authorize access to these investigational products even though they do not have regulatory approval. We know that the primary goal of clinical research is to provide further understanding of a product and to test its effectiveness. Thus, there is no inherent right that researchers have to distribute products that are being tested to patients, until it is proven that the treatment option works.

However, I argue that there comes a point in a clinical trail where if there is enough reasonable evidence that a product works, and may benefit patients, the drug should be an option for patients to take if they are currently taking a placebo, or even if they are not enrolled in the study.  In the AZT example, patients did not have another good option at the time to help cure their AIDS, and may were dying. Whether or not the drug worked well there was enough evidence that it did something of good value, and if there was no alternative therapy available at the time I think pharmaceutical companies should have gone ahead and created more of the drug to give to suffering patients. This would have been in line with beneficence, as it would have been protecting the rights of those who wanted the best treatment option available and it would have prevented them from harm (or at least had the best chance of making them slightly improve from their condition). While I do understand the specific guidelines clinical trials must follow prior to allowing certain treatment options to become available on the market, if the primary goal of developing these treatments in the first place is to help cure patients, then if any improvement is being seen and a patient wishes to give this medication a try (if there are no other available options) then I think they should be allowed to try it. It would thus have been beneficent for AIDS patients to have been allowed to take AZT during the clinical trial.

Resources

Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics. New York: Oxford   UP, 2009. Print.

David Hume, “Of Suicide,” in Essays Moral, Political, and Literary, ed. Eugene Miller      (Indianapolis, IN: Liberty Classics, 1985), pp. 577-89.

http://americanhistory.si.edu/blog/2010/09/a-brief-history-of-azt.html

Background on Stephen

Stephen Dawson was born prematurely and suffered from extensive brain damage due to meningitis. As many as 25% of newborns who suffer from meningitis die, and of those who survive 15-25% develop serious brain and nerve problems. Stephen survived, however was one of the 25% who suffered pretty heavily: he was left blind and with no control over his limbs or bodily functions.

Stephen had surgery when he was little, and afterwards required 10 hours of sustained caring for at home prior to being sent to a foster home at the age of 3. His parents remarked that his condition was “so poor and of such low quality, that the services and facilities could be better used by others” (Thomas, Waluchow & Gedge, 229). They believed that his life was painful and unhappy.

 Stephen’s Case

Now at age 7, Stephen’s professional caretakers have a different view of the situation. They see Stephen as “a happy little fellow despite his handicaps” (Thomas, Waluchow & Gedge, p. 231). They state that his abilities have been underestimated, and they have been much more involved in his life over the past 4 years than his parents have been and allude that they therefore perhaps understand his situation better. Now Stephen requires another surgery due to a blockage in the shunt that will lead to more brain damage and likely death. At first, Stepehen’s parents consent – however after some deliberation, they decide they would rather him die with dignity than continue on a life of suffering. The major questionable points to consider are threefold:

1)    Who gets to decide?

2)    On what grounds is it justified to not treat a patient?

3)    What are the legal rights of the mentally disabled?

Analysis

To answer the first question, we must address autonomy. With autonomy, one has the right to “self-rule that is free from both controlling interference by others and limitations that prevent meaningful choice” (Beauchamp & Childress, p. 101). In this situation, Stephen does not have the cognitive capacity to make a decision in which he adequately understands. Therefore, the legal right would logically go to his parents. However, the reason we typically resort to a parent is because they tend to be their child’s primary caregiver. In this circumstance, the workers at the foster home spend more time with Stephen than do his parents, and the Justice even argues that the professionals are “better qualified than the parents are to assess his condition” (Thomas, Waluchow & Gedge, p. 232).

In order to address the second question, it is imperative to consider non-maleficence. Physicians have a duty to care for patients and to do what they can to treat them. In this situation, it is in Stephen’s best interest to undergo the surgery in order to have the best chance of survival. In deciding who decides, physicians “should be making the decision whether to withhold or withdraw treatment,” as they have the knowledge in this situation (Gedge, Giacomini, Cook & DeJean, p. 864).

To answer the third question, to completely compromise and invalidate a human being based on a cognitive disability is acting as if their life is lesser than others. Similarly to how some feel strongly about keeping a fetus alive, a human being at age 7 is a living, breathing being and must be treated as so. Just because they are not fully cognitively able to make a decision does not mean that it is the best decision to passively let them die or even to “die with dignity.” Similarly to our previous situation involving the suicide case, would he have died “with dignity” if he had killed himself? Just as I believed it was important to save that individual’s life, it is important to save Stephen’s life. The staff at the foster home is technically the primary care management of Stephen, and in addition to the doctors who care for him, the team has indicated that treatment is in his best interests, and thus I believe that they have every right to go ahead with the surgery.

Resources

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York: Oxford UP, 2009. Print.

Gedge, Elizabeth, Giacomini, Mita, Cook, Deborah, and DeJean, Deirdre, “Decision Tools for Life Support: A Review and Policy ANalsis,” Critical Care Medicine 34, no. 3 (March 2006): 864-70.

Meningitis in Children. Merck Manuals. February 19, 2015. http://www.merckmanuals.com/home/childrens_health_issues/bacterial_infections_in_infants_and_children/meningitis_in_children.html.

Thomas, John, Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study   Approach to Health Care Ethics. 4th ed. N.p.: Broadview, 2014. Print.

Background

Suicide is not an easy topic of conversation for most people – and for obvious reasons. Taking one’s own life goes against everything we grow up believing is morally right. One of the most fundamental moral principles is to not kill. As we have discussed in class, this principle can be broken down into more specific domains, such as do not kill humans, and includes certain exceptions such as it may be ok to kill in self-defense. So, herein lies the problem: how do we view suicide? Is it morally wrong to kill oneself, or do we have the autonomy to do what we choose with our own life?

Simon’s Case

In this particular scenario, Simon was a clinically depressed 53-year-old who had been medicated for years. Simon reported difficulty concentrating and remembering things, and showed little interest in doing anything at all. He admitted to staff members that he was planning on killing himself. From a physician’s standpoint, their goal is to do everything they can do keep a patient alive. The psychiatrists’ suggestion was to try electroconvulsive shock therapy (ECT) as a more intense method to hopefully alleviate some of his depression. ECT would require 6 shocks over a 2-week period. While the charge of electricity induces a convulsive seizure, studies conducted with elderly depressed patients have shown that the procedure significantly reduces remission rate (Bjølseth et al., 2014).

Analysis

In many cases, such as when an individual is comatose, we value the decision the individual would have made prior to their comatose state, or based on what they had written in their living will. Similarly, some may argue that Simon should be allowed to take his own life if he so chooses in order to end his suffering. However, I argue that if Simon has treatment-resistant depression (TRD), he is not in a healthy state of mind to make a clear decision. TRD occurs when depressed patients are nonresponsive to treatment used for depression, and many alternative methods are now being utilized to treat these patients, such as ECT or brain stimulation (Souery et al., 2006). Therefore, the psychiatrists should do their job and treat him to the best of their ability, and perhaps once he is thinking rationally again he will be able to make a clearer life choice. Thomas, Waluchow and Gedge (2014) raise an important question – “Should we regret having administered the most effective known treatment for Simon’s depression or regret that the most effective treatment available proved to be inadequate?” In the non-maleficent viewpoint it is best to try all options before all else fails.

Perhaps my opinion is biased because I will one day become a psychologist. From a psychologist’s standpoint, their primary goal is to keep a patient alive and do whatever it takes to minimize suffering and help a patient recover. However even thinking about this situation from my own moral viewpoint, I think that suicide is not the solution to end suffering, and that Simon will be able to recover through means of other options that were not previously explored, and as humanbeings it is our duty to do what we can to keep Simon alive and treat his depression so that he is no longer suffering and can live a full and fulfilling life.

Resources

Bjølseth TM, Engedel K, Benth JS, Dybedal GS, Gaarden TL and Tanum L (2014). Clinical            efficacy of formula-based bifrontal versus right unilateral electroconvulsive therapy         (ECT) in the treatment of major depression among elderly patients: A pragmatic,       randomized, assessor-blinded, controlled trial. J Affect Disord. 175C:8-17.

Souery D, Papakostas GI and Trivedi MH (2006). Treatment-resistant depression. J Clin             Psychiatry. 67 Suppl 6:16-22.

Thomas, John, Wilfrid J. Waluchow, and Elisabeth Gedge. Well and Good: A Case Study   Approach to Health Care Ethics. 4th ed. N.p.: Broadview, 2014. Print.