Hi fellow PHIL 116 classmates and bioethics blog readers! I recently watched the short film, Extremis, on Netflix and as it is both a quick watch and very relevant to our course, I recommend it to all of you! To get an idea of the film, the trailer is below:

In a mere 24 minutes, Extremis follows the lives of a few patients and their families who are on breathing tubes, feeding tubes, and other forms of life support. The filmmakers did an excellent job demonstrating the opinions and challenges faced by physicians, surrogate decision makers, and the patient’s themselves. It addresses patient autonomy (or lack thereof) of patients who may not be able to express their end-of-life wishes. It also demonstrates the tug between prolonging life, which may do more harm than good, and ending it, which may have other ethical implications.

*SPOILERS AHEAD*

I found it fascinating that the different families, all with similar situations, each had a different opinion on how to treat their dying family member. For example, in Donna’s case, her family opted to remove her from the breathing tube and she died one day later. This decision, while challenging and emotional, was the right decision in my opinion. As shown in the documentary, Donna communicated a clear dislike of the breathing tube and a general understanding that if removed from the tube, she would die. Her family also informed the doctor’s that she had discussed end-of-life care before and was comfortable with removal of machine support.

However, in Selena’s case, her daughter equates removing life support with murder and so her mother is hooked up permanently to a breathing machine and dies six months later. A family of strong faith, Selena’s daughter and brothers are hoping for a miracle. However, when we look at these cases, I wonder if those extra six months actually brought joy or benefit to the patient herself or simply removed the guilt from her surviving family. The film states at the end that she survived with a few periods of consciousness – but did that add to her quality of life?

All in all, it was a very thought-provoking film for me as we have been discussing these types of issues the entire semester. I encourage you all to watch and post your thoughts below!

The case of the HeLa cells presents an interesting dichotomy between justice, fairness, and the greater good. The case highlights the tragic story of Henrietta Lacks, who died from cervical cancer at age 31 in 1951. A posthumous biopsy of her tumor was taken without the consent of Henrietta or her family members. This case represents one of the most egregious forms of medical misconduct, in which doctors neglected to receive informed consent. Informed consent is a necessary component of research or medicine whenever dealing with patients. Henrietta Lacks never consented to the biopsy or the redistribution of her cells. Her family was never compensated for the decades of research using Henrietta’s cells. “Currently, cells can be bought and sold without the patients’ permission, but tissue rights advocates suggest that these often-unwitting donors deserve a share in the profits their cells eventually reap.” (Devine) Cases like this highlight the importance of full informed consent. It is immoral for a doctor to perform a procedure on a patient without their knowledge, even posthumously. Without informed consent, patients do not have autonomy. The principle of respect for autonomy is one of the utmost important principles of bioethics. It is paramount to a successful doctor-patient relationship. Exceptions to this rule should only be considered in extraordinary cases, for instance, some “exceptions to full informed consent are: If the patient does not have decision-making capacity, when the patient has waived consent, and when a competent patient designates a trusted loved-one to make treatment decisions for him or her.” (De Bord)

Taking samples from a patient, such as biopsies, should always be discussed with either the patient himself or a family member. Moreover, the physician should ensure that the patient can provide full informed consent regarding the procedure and the use of the specimen. “The Patient Consent Form and associated Patient Information Sheet (necessary for most studies) should be written in concise and explicit language that anyone can easily understand, explaining clearly the need for the specimen, the overall objective of the research and why it is important (in lay terms).” (Geraghty et al.) This case is reminiscent of Dr. Richard Ward’s actions toward the Nuu-chah-nulth. The Nuu-chah-nulth case was discussed in class earlier in the semester. Dr. Ward took blood samples from members of the Nuu-chah-nulth and distributed it for the use of genetic studies without their consent.

However, another issue regarding Henrietta’s case is that her cells went on to aid in research that led to a vaccine for polio, among other scientific breakthroughs. Without these cells, there is no guarantee that these breakthroughs would’ve occurred. This is an issue of Henrietta’s autonomy versus the principle of benevolence regarding the countless patients helped with the resulting research. The question at hand is, does the fact that the cells have saved and improved countless lives make up for the way they were obtained? This is truly a difficult question to ponder because of the significance of the researched performed with HeLa cells. Personally, I do not think the benefit the cells have provided justifies the method through which they were obtained. The incredible violation of patient autonomy cannot be excused with any outcome. The doctor who took the initial biopsy did not realize the extent of their worth. He simply violated Henrietta’s right to consent to the procedure. I would love to hear more opinions in the comments. Do you believe these actions can never be excused? Do you agree with the idea that “uprooting contemporary ethical principles, like getting informed consent for research on tissues, and applying them to periods where they did not exist undermines our appreciation of the past in critical ways.” (Wilson), excusing the retired methods of tissue collection?

References

De Bord, Jessica. “Informed Consent.” Informed Consent: Ethical Topic in Medicine. University of Washington School of Medicine, 7 Mar. 2014. Web. 07 Apr. 2017.

Devine, Claire. “Tissue Rights and Ownership: Is a Cell Line a Research Tool or a Person?” Columbia Science and Technology Law Review. N.p., 09 Mar. 2010. Web. 07 Apr. 2017.

Geraghty, R. J., A. Capes-Davis, J. M. Davis, J. Downward, R. I. Freshney, I. Knezevic, R. Lovell-Badge, J. R W Masters, J. Meredith, G. N. Stacey, P. Thraves, and M. Vias. “Guidelines for the Use of Cell Lines in Biomedical Research.” British Journal of Cancer. Nature Publishing Group, 09 Sept. 2014. Web. 07 Apr. 2017.

Wilson, Duncan. “A Troubled Past? Reassessing Ethics in the History of Tissue Culture.” SpringerLink. Springer US, 04 Aug. 2015. Web. 08 Apr. 2017.

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 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.

This article challenges the claim that “access to [universal] health care is necessary to ensure health, which is necessary to provide equal opportunity” (Sreenivasan 21). The author doesn’t claim that universal healthcare or equal opportunity are unimportant, but rather that equal opportunity doesn’t necessarily result from universal healthcare access.

It is hard to deny that ensuring better health allows people to accomplish more, which could be seen as providing them with more opportunities. Furthermore, providing healthcare seems like a perfectly logical way of ensuring health. However, the author explains that the core of this argument relies on defining opportunity, and specifically what everyone’s equal share of opportunities is. This is where the argument falls apart; not everyone starts with the same share of opportunities. Rather, the shares of opportunity that can be maintained, restored, or increased with better healthcare are actually better defined as “relative shares” (23). Healthcare facilitates better health, which in turn facilitates a maintenance of opportunities, but those opportunities are not equal by nature.

The purpose of this argument is not to discredit any benefits of universal healthcare, but rather sets the author up to make the next argument: using the same amount of money to ensure more socioeconomic equality actually has a bigger benefit on health and overall opportunity than just spending it on healthcare.  In the author’s words, “A society does more to move its citizens toward their fair share of health when it devotes the equivalent of the health care budget to improving the social determinants of health than when it runs a national health care system. It follows that equal opportunity does not require universal access to health care” (27).

I appreciate the fact that the author is not completely discrediting the role of universal healthcare. Rather, it addresses only a small portion of the overall problems created by the current socioeconomic gradient. As the paper acknowledges, and as I have discussed and read about in health and sociology classes, socioeconomic status is one of the most important factors in determining health outcomes, including disease rates and mortality rates. The following is an example of expected lifespan at age 50 in the mid-1900s based on individuals’ income brackets. Income inequality has only increased since then.

While, in theory, it sounds nice to spend money on fixing the problem of income inequality, accomplishing that is extremely difficult. There is no easy way of distributing the money or identifying who needs it the most.

The immediate implementation of some of these ideas may not be possible, but it is still important to acknowledge the fundamental causes of uneven distribution of health and unequal access to opportunities. It’s also important to acknowledge the flaws in arguments for and against important issues like universal access to healthcare. This article also does a good job of exposing many of those flaws. It is imperative, however, to ensure that healthcare benefits don’t get cut just because the motives for universal healthcare or certain treatments are flawed—they still play an important and beneficial role.

Case 7.3 explains how Henrietta Lacks died of cervical cancer in 1951 at age 31.  After her death, a biopsy of her tumor was taken for research purposes.  As a poor, black woman she was treated in a public hospital ward, where it was common practice for medical researchers to conduct research on patients since they were being treated free of charge.  The researchers discovered that Henrietta’s cells were different and the first ever immortal cells were grown in a laboratory.  These cells were mass produced and passed on to other researchers that eventually won Nobel Prizes, however, Henrietta’s family still lives in poverty and have never received any benefit or recognition for Henrietta’s “contribution to science” (Thomas, et al. 254).  Is it fair that Henrietta’s cells were taken in the first place and that her family has reaped no positive outcomes from the process?

While reading Beauchamp and Childress’s section on “Vulnerability, Exploitation, and Discrimination in Research”, I tried to find the answer or rather some logic as to how the principle of justice was upheld or broken. While vulnerable groups include elderly, prisoners, poor people, and pregnant women, the dead was never mentioned. As Beauchamp and Childress say, “‘Vulnerable’ is an inappropriate label for any class of persons when some members of the class are not vulnerable in the relevant respects” (267). When dead, you no longer get to make decisions for yourself and this applies to all “members of the class”, so does this make dead patients a vulnerable population? I guess you could say that some patients make specific arrangements prior to their death as to what they do and do not want to happen to their body, but not everyone has this luxury of time or choice. Back in 1951, I have a feeling that Henrietta did not think about what might happen to her body if and when she died. Would she have been willing to donate her body to research and the development or science? As discussed in an article by CNN, there are many possibilities and uses for your body after you die, such as donating your organs, leaving your body to a body farm, and even becoming a crash test cadaver, the options are endless for you to choose. However, Henrietta seems to have never been given a choice. Just because it was 1951 does not make it acceptable for researchers to take Henrietta’s cells and later on provide no recognition or benefit to her “contribution” to science.

After reading Henrietta’s case, I was curious to see if Henrietta or rather her family ever received any compensation or acknowledgement.  An article from NBC News described how in 2013 the NIH was finally “making good with the Lacks’ family”.  A new agreement was arranged so that Henrietta’s genome data would only be available to those who applied and were granted permission. In addition, two representatives from the Lacks family now serve on the NIH group responsible for reviewing biomedical researchers’ applications who are requesting access to the cells. Any researcher who uses the data is also asked to include an acknowledgement to the Lacks family within the publication. Along with not receiving any financial compensation, it seems incredibly unfair to Henrietta and her family that it took over 60 years for them to gain recognition for a contribution that she never had a say in to begin with. Even though this discovery has been helpful in creating vaccines against polio and other research, permission from Henrietta or her family was never even considered because she was a poor, black woman in 1951.

Works Cited:

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York:  Oxford UP, 2009, 2013. Print.

Caplan, Ph.D. Art. “NIH finally makes good with Henrietta Lacks’ family – and it’s about time, ethicist says.” NBCNews.com. NBCUniversal News Group, 07 Aug. 2013. Web. 07 Apr. 2017.

Cohen, Elizabeth. “Ten uses for your body after you die.” CNN. Cable News Network, 28 Oct. 2010. Web. 07 Apr. 2017.

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. Print.

In this particular case, Janet Green is in urgent need of a dialysis machine, as she is experiencing acute kidney failure. After seeking admission to two nearby hospitals, the patient was denied treatment due to a shortage of dialysis machines. The hospitals have implemented “first come, first serve” policies for the machines, rather than analyzing the specific patient’s need for treatment and their unique situation. This simplistic, egalitarian policy avoids necessary discussions concerning the patient’s specific condition. It is imperative to analyze principals of distributive justice to reach an ethical conclusion concerning the allocation of scare medical resources.

Distributive justice is the “fair, equitable, and appropriate allocation of benefits and burdens determined by norms that structure the terms of social cooperation” (Beauchamp and Childress, 250). As demand for certain medical treatments exceeds the existing supply, it is necessary to determine a fair process to allocate resources. In my opinion, the hospitals’ existing “first come, first serve” policy is not appropriate, as it fails to maximize social utility. In other words, I believe that the policies should create the most good for the greatest number of people. Therefore, a utilitarian perspective should be utilized to reevaluate and revise the hospitals’ existing policies.

It is imperative to define what specific benefit or function to maximize when applying the theory of utilitarianism. Essentially, physicians and medical personnel must determine which patient will receive the most benefit from the treatment. Specifically, one must consider medical criteria that include likelihood of benefit, urgency of need, change in quality of life, and duration of benefit (American Medical Association). This particular criterion will help patients with the utmost medical need, while offering the best possible outcome by evaluating an individual’s future quality of life.

In my opinion, it is precarious to maximize functions that stray outside the realm of medicine, as this practice may favor specific patient populations. Specifically, non-medical criteria including ability to pay, social worth, and patient contribution to illness may place vulnerable, low-income populations at increased risk (American Medical Association, 228). A strong focus on non-medical factors is rather insensitive, as it places a high burden on the individual. Additionally, the practice neglects the idea that individuals can turn their lives around, and make changes that will increase their social worth.

As a counterargument to using medical criteria under utilitarianism, one may state that this approach fails to capture equality of persons (Persad, 427). In other words, this practice “neglects the importance of fair distribution” (Persad, 429). Essentially, it is rather difficult to determine optimal principals for resource allocation, as each diverse policy presents new, complex issues. However, I argue that focusing on maximizing future benefits to certain patients will create the greatest good across society. The process and utilization of medical criteria favors individuals with the highest risk, and who will receive the greatest benefit from treatment.

The hospital’s current policy may be fair and easy to quantify, yet it is highly insufficient. The policy does not consider the relevant differences that exist between patients, which may hinder the hospital’s ability to allocate resources in an efficient manner. Additionally, the “first come, first serve” model may be detrimental, as it favors individuals who are well informed, wealthy, and who may travel faster (Persad, 424). Therefore, vulnerable, low socioeconomic patients may not have a fair chance at receiving care.

WORKS CITED:

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

Persad, Govind, Alan Wertheimer, and Ezekiel J. Emanuel. “Principles for Allocation of Scarce Medical Interventions.” The Lancet 373.9661 (2009): 423-31. Web.

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

Virtual Mentor. “AMA Code of Medical Ethics’ Opinions on Allocating Medical Resources.” American Medical Association 13.4 (2011): 228-29. Web.

I was thrilled to see that this case study was assigned as I recently watched the trailer for a new HBO film about this exact case, The Immortal Life of Henrietta Lacks:

As a young scientist myself who has utilized cell culture techniques, I find this case so exciting. The ability to grow these immortal cell lines is essential in aiding advancements in biomedical research. As the case mentions, HeLa cells, the first immortal cell line from patient, Henrietta Lacks, aided the development of the polio vaccine and numerous Nobel prizes (Thomas, 2014). But, with every case there is a ethical dilemma. So, what’s the problem here?

Despite the amazing breakthroughs due to Henrietta Lacks’ cells, her family – a poor family with inadequate health care – never knew about the use of their mother’s cells until science journalist and author of The Immortal Life of Henrietta Lacks, informed them of their mother’s scientific contribution. As they were uninformed, they never directly benefited, financially or otherwise, from their mother’s cells. As Henrietta’s daughter points out, “If our mother’s cells done so much for medicine, how come her family can’t afford to see no doctors?” (Thomas, 2014).

Thomas raises a few key ethical questions at the end of the case. First, he asks if patient identities should be protected. The answer is a clear “yes” from me. While HeLa is “vague”, it was still specific enough to be traced back to the patient. As the Hayes Evidence blog explains, “Consider for a moment how you would feel if your complete genetic make-up was made available to anyone who wanted to look at it. That’s what happened earlier this year when the entire HeLa genome sequence was published in the journal G3: Genes, Genomes, Genetics and made available without restriction” (Hayes Evidence Blog, 2013). While some of us may think it would be cool to have our cells be “famous” (I personally do!), it is still a violation of patient privacy and could have unwanted implications for her surviving family members.

The second question raised in the case regards patient consent. At the time, Henrietta’s family was unaware of how her cells would be used. While there is no harm to the person directly if the cells are used for research, if family members are uninformed or have misconceptions about scientific research, their concerns should be addressed. However, if a patient’s cells – like Henrietta’s – see promise in research, I do not see a problem with using them as long as 1) there is no harm to the patient and 2) the patient’s privacy is protected as stated previously.

The third question is a little more conflicting. The authors ask if companies should be able to profit from cultured cells. Cultured cell lines are sold often as they are used in labs across the world. I do not see a problem with profiting from cells because in my mind, they are now more of scientific tool than a piece of a person. I think the larger problem here is that Henrietta’s family did not receive any recognition or benefit. As the New York Times explains, “It had never occurred to anyone to ask permission to take their mother’s tissue, tell them that her cells had changed scientific history or even to say thank you. And certainly no one had ever suggested that they deserved a share of the profits” (Grady, 2010). Because Henrietta never knowingly donated her cells, I think the family should have been informed and recognized for their mother’s gift to science.

The fourth and final question raised by Thomas asks if people should let their cells or tissues be used in scientific research. As a supporter of biomedical research, I say yes. However, I do think that the patient and/or the patient’s family should be informed of the potential uses of the cells. However, there are exceptions. Some people are opposed to certain types of research – perhaps due to religious beliefs – and would feel uncomfortable consenting to a donation. From the perspective of a scientist, the more cells the better! But, if we are going to respect patient autonomy, they should at the very least be informed and if they are strongly opposed, they should be allowed to make that choice.

In hindsight, I think it was right to take the cells from Henrietta Lacks. The benefits to society – supporting the principle of justice and the utilitarian point of view – outweigh individual harm. However, the WAY they took the cells from Henrietta was not favorable. Her family should have been informed and recognized for their mother’s contributions early on in the process. Eager to hear your thoughts!

Grady, D. (2010). Second Opinion – A Lasting Gift to Medicine That Wasn’t Really a Gift. New York Times. 

Hayes. HeLa Cells, Patient Privacy, and Biomedical Research. Hayes Evidence Blog. 

Thomas, J. (2014). Well & Good. Broadview Press.

In this blog post, I intend to bring the more specific principle of justice into the discussion of W&G Case 6.3 “Tracy and Robert Latimer: ‘It Was Right to Kill My Daughter.’”  When reflecting on this specific case, it is hard to ignore the blatant moral problems in Mr. Latimer’s intentional actions.  However, the mention of the “Capabilities Theories” (Beauchamp and Childress 259-60) raise aspects relevant to the case surrounding Tracy’s quality of life that could support and undermine her father’s decision to kill her, as well as the court’s responsibility in ruling about such actions.

The quality of a person’s life is “contingent on what they are able to achieve, and a life well lived is one in which individuals sustain and exercise a group of core capabilities” (Beauchamp and Childress 259).  In Tracy’s case, she inherently cannot fulfill the ten core capabilities listed, most applicably “affiliation” and “control over one’s environment.” Tracy has no control over her environment or ability to participate in decisions over her future, and assumingly has a more difficult time than others developing bonds and acting independently.  For these main reasons, her capabilities do not match those of a typical person’s.  In reference to the principle of justice as laid forth by Beauchamp and Childress, “[…] we, as a society, ensure that the world does not interfere with individual’s development of their core capabilities […]” (260).  Tracy is vulnerable and subject to the decisions others make on her behalf. Acting justly it is the responsibility of society (not just Mr. Latimer) to protect Tracy’s best interests. If those are along the lines of PAS, it is necessary that correct procedures are followed and honored.  Mr. Latimer could argue that Tracy’s disabilities qualify her for living in a “reduced state” and not fulfilling the capability of life, Tracy possesses many other capabilities. To possess and express these, however, may indicate different things.

The Stanford Encyclopedia of Philosophy makes a distinction between “functionings and capabilities”, or the “opportunity versus the ability” to do something.  In terms of core capabilities, should there be a distinction between having the opportunity to partake in emotions, love, political opinions and discussions, and being physically and mentally able to do so?  Tracy, as a human being, certainly had the opportunity to fulfill the core capabilities outlined for social justice, but physically and mentally could not. An important distinction must be considered on a case-by-case basis to provide adequate justice.  To create a just world and society, we must think and act in accordance with what is best and considered just individually and not always necessarily what is better for the common good. Was there, or could there have been, a duty of justice to the public and good in Tracy’s case?  It is a mistake to generalize justice to one specific concept and attempt to encompass all cases, and it is important to realize that, like almost all principles in bioethics, justice is relative.

Sources

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York:  Oxford UP, 2009, 2013. Print.

Robeyns, Ingrid. “The Capability Approach.” Stanford Encyclopedia of Philosophy. Stanford University, 14 Apr. 2011. Web. 31 Mar. 2017.

Thomas, John, Wilfrid J. Waluchow, and Elisabeth Gedge. “Case 6.3: Tracy and Robert Latimer: ‘It Was Right to Kill My Daughter’.” Well and Good: A Case Study Approach to Health Care Ethics. Peterborough, Ontario: Broadview, 2014. 222-28. Print.

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http://www.quotesvalley.com/quotes/possibility/

As we have been discussing in class there are two ways to approach healthcare policies rooted in beneficence: utilitarianism which aims to create policies that do the most good for the greatest amount of people versus libertarianism which aims to create policies that maximize individual choice. Within the approach of utilitarianism there is an economic component known as Cost-Effectiveness Analysis (CEA) which “measures the benefits in nonmonetary terms, such as years of life, quality-adjusted life-years, or cases of disease,” (Beauchamp and Childress 231) in order to better understand the different values of outcomes for all patients. Within CEA, one of the ways to help decide which patients should be saved or which medical treatments to utilize, healthcare professionals have measured HALYs, health-adjusted life-years, which combine longevity of life with health status. Specific types of HALYs are QALYs, quality-adjusted life-years which “are calculated by estimating the year of life remaining for a patient following a particular pathway and weighting each year with a quality of life score” (Beauchamp and Childress 239). Thus, what this means is in situations where physicians are trying to determine which path of medical treatment to use, they incorporate the calculation of QALYs to figure out which treatment will not only give the patient the longest life possible but also the best quality of life.

Although the main goal of QALYs is to bring good to the greatest amount of people, there are some challenges and problems that accompany these calculations. First of all, QALYs require the measurement of quality of life which is a discussion that was brought up earlier in class which highlighted that there are many different interpretations of quality of life so it can be difficult to standardize such measurements. Despite this challenge, “analysts start with rough measures, such as physical mobility, freedom from pain and distress, and the capacity to perform the activities of daily life and to engage in social interactions” (Beauchamp and Childress 239). Secondly, as QALYs are used to create public health policies it is important that the notion of egalitarianism is maintained that way “each healthy life-year is equally valuable for everyone” (Beauchamp and Childress 240).

Lastly, the concept of Rule of Rescue which according to David Hadorn is “people’s perceived duty to save endangered life whenever possible” directly conflicts with QALYs since this rule demands out of beneficence that all lives should be saved if possible while QALYs limit that to saving only those who will have better outcomes. An interesting idea brought up by Shepley Orr and Jonathan Wolff in their article is that of a “rescue-adjusted QALY.” In their article, they propose the idea that when QALYs are calculated there would be an “additional value of rescue [where] rescue could be given extra weight in our calculations but not the apparent absolute weight called for by adherents of the rule of rescue” (Orr and Wolff 531). According to this idea, both the principle of beneficence and the concept of QALY policy would be better served by incorporating the element of rescue to the measurement of outcomes. This would enable beneficence to be more easily recognizable since the act of doing good through physical rescue would become pronounced. Also, the QALY policy side of the situation would also be represented since this adaption would not be removing the calculations of life-years or the quality life of those life-years but rather adding an extra component to be considered.

Work Cited:

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

Orr, Shepley, and Jonathan Wolffe. “Reconciling Cost-Effectiveness with the Rule of Rescue: the Institutional Division of Moral Labour,” Theory and Decision. http://link.springer.com/article/10.1007/s11238-014-9434-3