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.

Terrence F. Ackerman argues that medical doctors have the responsibility to intervene in their patient’s decision-making if it is in their best interest. The reasoning behind his argument is that illness inherently diminishes the value of autonomy because people who are sick are not competent enough to make their own decisions. This may be due to physical, psychological, or social constraints, relating to their illness or medical situation, which influence their decisional capacity. “Decisional capacity is based on the patient’s ability to understand the choices, to deliberate about those choices, and to articulate his choice. Decisional capacity is dynamic—that is, a patient who had appropriate decisional capacity yesterday may not have it today.” (Marco) I agree with his argument in the sense that doctors should evaluate whether a patient is mentally sound enough to make competent decisions. However, if a patient is mentally sound, a doctor should not override their decision based on a notion of diminished autonomy. There will always be stressors affecting a patient’s decision-making capacity. However, if the patient is not psychologically impaired, they should be able to have final say in their medical treatment, regardless of their physician’s opinion.

The issue at hand is one of patient autonomy versus the principle of beneficence, in the sense of paternalism. Doctors must weigh whether their duty to help their patient is greater than the patient’s right to make autonomous decisions. Initially, this seemed like a simple decision. A doctor should always ensure their patient is making decisions that are in their best interest. However, the main deterrent to this is that sometimes patients do not agree with their physicians about what course of action is in their “best interest”. Should a medical professional be able to override a patient’s bad medical decision based on their knowledge of the patient’s best interest?

This idea reminds me of the issues we discussed in the beginning of the semester. For instance, Jehovah’s witnesses are forbidden by their religion to receive blood transfusions, even in times of immediate need. When treating a patient who is a Jehovah’s witness, would it be acceptable for a physician to override the patient’s decision to refuse a blood transfusion if it would save the patient’s life? Many would argue that the answer is no, due to the principle of autonomy.

In the end, I believe doctors must come to terms with allowing patients to make decisions that may not necessarily result in their best interest. This does not mean a physician is not entitled to express their professional opinion. In fact, I think the best course of action for a physician is to explain their reasoning to the patient and allow them to make their own decision. “In cases where the choice made will clearly adversely affect the patient, practitioners need not be so neutral that they cannot indicate what they consider to be the best choice. No effort at persuasion is tantamount to abandonment.” (Dunbar) Therefore, doctors should only intervene in patient decision-making by persuading the patient to proceed in one direction versus another. Patients have the right to refuse treatment, even if it is not the best course of action in the eyes of medical professionals. I believe the following quote by Dr. Steven Pantilat appropriately summarizes a physician’s obligations:

“a patient who has had bypass surgery may want to continue to smoke or a patient with pneumonia may refuse antibiotics.  In these situations the autonomous choice of the patient conflicts with the physician’s duty of beneficence and following each ethical principle would lead to different actions. As long as the patient meets the criteria for making an autonomous choice (the patient understands the decision at hand and is not basing the decision on delusional ideas), then the physician should respect the patient’s decisions even while trying to convince the patient otherwise.” (Pantilat)

References

Ackerman, Terrence F. “Why Doctors Should Intervene.” The Hastings Center Report 12.4 (1982): 14-17. JSTOR. Web. 18 Mar. 2017.

Dunbar, Terri. “Autonomy versus Beneficence: An Ethical Dilemma.” Primary Health Care. N.p., Feb. 2003. Web. 18 Mar. 2017.

Marco, Catherine A. “Does Patient Autonomy Outweigh Duty to Treat?” Virtual Mentor. Amer Med Assoc, 24 Mar. 2009. Web. 18 Mar. 2017.

Pantilat, Steven. “Autonomy vs. Beneficence.” Autonomy vs. Beneficence. UCSF School of Medicine, 2008. Web. 18 Mar. 2017.

The practice of mercy killings has been a prevalent norm throughout the course of human history. However, in recent times, we have seen a spark in the moral debate relating to this issue. Case 6.3 highlights the rift in beliefs relating to euthanasia. There are 3 recognized forms of euthanasia:  voluntary, non-voluntary, and involuntary (BBC 2014). Voluntary euthanasia is performed with the explicit consent of the person wishing to end their life. Non-voluntary euthanasia occurs when someone is unable to give consent. Involuntary euthanasia concerns cases where someone wants to live but is killed regardless. For instance, “A soldier has their stomach blown open by a shell burst. They are in great pain and screaming in agony. They beg the army doctor to save their life. The doctor knows that they will die in ten minutes whatever happens. As he has no painkilling drugs with him he decides to spare the soldier further pain and shoots them dead.” (BBC 2014) The morality of these cases is usually taken on an individual case basis, and the ethical concerns are raised based on distinct opinions.

Case 6.3 in Well and Good describes the circumstances of Robert Latimer, who murdered his 12- year old daughter in 1993. Robert’s daughter Tracy suffered from numerous and intense disabilities, leading to incredible pain and torment. Not wanting to watch his daughter suffer any longer without the prospect of a cure or helpful treatment, Robert decided to end her life by exposing her to carbon monoxide. This case concerns the enactment of non-voluntary euthanasia through what could be considered a “mercy killing”. Robert’s daughter died a peaceful death, juxtaposing her tempestuous life. Another ethical issue comes to play with the concept of autonomy. Tracy could not voice her opinion because of her mental disability. Therefore, this case brings forth the question: is it morally justified to peacefully end someone’s life without their consent?

The ethical concerns with euthanasia arise from the Hippocratic oath. Physicians are not meant to harm patients and should not intentionally lead them towards death. However, what if death is in the best interest of the patient? For instance, almost 5,000 cases of euthanasia performed in the Netherlands in 1991 lacked patient consent. This contrasts many views held in the United States regarding assisted suicide. Some argue that assisted suicide is a sympathetic way to allow patients to die with dignity, others deem it as unacceptable as murder in the first degree. In the case of Tracy Latimer, could it be argued that her life was filled with more pain than happiness? Thus, her death was a merciful escape from further misery. Or was her death unwarranted? I believe Tracy’s father chose to end her suffering with good intentions, regardless of the circumstances which he went about it. I do not believe his actions were malicious in nature or he meant to cause Tracy any harm. It is more difficult to say whether he should have killed her, but his actions speak to the desperation he must have felt watching his daughter live with constant pain.

When reading about the morality of euthanasia, certain ideas are frequently shared, like the comparison between the legality of non-voluntary euthanasia, abortion, and the withdrawal of life support. These situations will most certainly involve the death of someone who would be unable to consent. For example, in the United States, it is perfectly legal to abort a child due to the development of a disability in-utero. Moreover, it is not only legal but incredibly common to terminate life supporting technology for patients in long-term comas. Many consider these humane choices; a life is ended to prevent future suffering and discomfort. After reading about this topic, I hold the belief that euthanasia is beneficial to patients who would otherwise be in distress, including those with severe mental incapacities. I would love to hear other points of views in the comments. Are Robert’s actions any different to terminating the life support for a comatose patient? How can we compare these distinct circumstances?

Other example of a euthanasia case:

https://www.youtube.com/watch?v=MAHey2LjA6c

References:

“Background about Euthanasia in The Netherlands.” Patients Rights Council. N.p., 2013. Web. 17 Feb. 2017.

“BBC – Ethics – Euthanasia: Voluntary and Involuntary Euthanasia.” BBC News. BBC, 2014. Web. 17 Feb. 2017.

Cook, Michael. “Why Not Non-voluntary Euthanasia for Psychiatric Patients?” BioEdge. N.p., 17 Oct. 2015. Web. 17 Feb. 2017.

Manninen, B. A. “A Case for Justified Non‐voluntary Active Euthanasia: Exploring the Ethics of the Groningen Protocol.” Journal of Medical Ethics. BMJ Group, Nov. 2006. Web. 17 Feb. 2017.

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

Beauchamp and Childress outline four main principles of healthcare ethics: respect for autonomy, nonmaleficence, beneficence, and justice. In my opinion, no other issue blends these principles together as well as the requirement of informed consent in medical research. Informed consent is a vital component of the trust between a healthcare professional and a patient. If a patient is not given all the information regarding a medical treatment, that trust becomes void. The US Congress defines informed consent as

“including information about the nature of the experimental procedure, the reasonably foreseeable risks or discomforts, the benefits to the subjects or others, alternatives, the extent of the confidentiality of the records, possible compensation for injuries, the obligation to contact subjects if problems arise, and the right of subjects to refuse to participate or to withdraw.”  (Brody & Engelhard 288)

It seems that voluntary consent should be of utmost importance when practicing ethical healthcare. However, this has not been the norm in all forms of research. One of the most appalling of these instances occurred during World War II, when the Nazi regime funded medical experiments performed on subjects who were not given the right to withdraw or refuse to participate. These experiments were implemented without the consent of the participants, in conditions so inhumane they led to the death and suffering of hundreds of innocents. One of the doctors responsible for these atrocities justified his actions by stating that his research prevented the endangerment of innumerable human beings. He emphasized that those deaths were not in vain because they led to medical breakthroughs that helped a great number of people.

The case concerning the Jewish Chronic Disease Hospital involved researchers who neglected to inform patients of their participation in an experiment where they were injected with cancerous cells. Instead, the patients were told they were “receiving a skin test for immunity or response” (Coppenger 106). Despite this course of action, the experiment led to valuable results in the field of cancer research. Withholding information from participants is a violation of their right to consent. Subjects cannot agree to participate when they are not aware of the true parameters of a study. Taking cases like this into account, the question remains: is it morally justifiable to disavow informed consent when the results of an investigation could lead to a “greater good”?

This is a problematic situation from a moral and ethical standpoint. On one hand, the autonomy of a patient is compromised due to their inability to consent to an experiment or a procedure. On the other hand, successful research could prove to save or improve the lives of countless individuals. Whether the ends justify the means is an age-old question. I believe the sovereignty and safety of patients should not be compromised under any circumstances. Some researchers argue that denying consent is ethical when evaluating specific cases. I disagree with this opinion. If we apply a spectrum of ethical excuses debating the morality of the right to consent, where do we draw the line? At which point do we deem it acceptable to sacrifice the lives of the few to save the lives of the many? That line of thinking produced the Nazi ideology that allowed for dozens of experiments performed on unwilling victims. The essential respect for autonomy should not be granted for some and denied for others. “Informed consent is a fundamental principle of health care.” (Cordasco 1)

Works Cited

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

Brody, Baruch A., and H. Tristram Engelhardt. “Consent of Adults to Experimentation.” Bioethics: Readings & Cases. Englewoods Cliffs, NJ: Prentice-Hall, 1987. 286-90. Print.

Coppenger, Mark T. “Hyman vs. Jewish Chronic Disease Hospital.” Bioethics: A Casebook. Englewood Cliffs, NJ: Prentice-Hall, 1985. 105-06. Print.

Cordasco, Kristina M. “Obtaining Informed Consent From Patients: Brief Update Review.” Making Health Care Safer II: An Updated Critical Analysis of the Evidence for Patient Safety Practices.U.S. National Library of Medicine, n.d. Web. 27 Jan. 2017.