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 Mappes and Zembaty’s essay, “Patient Choices, Family Interests, and Physician Obligations”, they discuss John Hardwig’s conceptions of autonomy.  Hardwig, proposes two forms of autonomy, A1 being “the patient’s freedom or right to choose the treatment he believes is best for himself” and A2 as “the responsible use of freedom” (Hardwig, 1990).  Hardwig believes that A1 is the “accepted meaning” of patient autonomy, despite rejecting this concept and proposing A2. What is to be thought of Hardwig’s suggestion?

I do not agree with Hardwig that A1 should be completely rejected, but I think A2 provides a new and important argument to the idea of patient autonomy. Individuals that are competent and capable of making decisions about their own medical treatments and such should have that power and freedom. With that being said, the expectation of those that qualify to make their own choices if that they will use this right responsibly and sensibly. However, in more complicated situations, such as when patients are deemed incompetent or are unable to make decisions about their own health due to unforeseen circumstances, the idea of “the responsible use of freedom” should then be applied to that of the surrogate decision maker.  For example, in case 1.1, Marie Francois has complications during surgery and is in need of another operation otherwise she will most likely die.  She communicates by way of written notes that seem rational, but her oldest son claims that she does not understand the consequences of her refusal.  I think that Hardwig’s proposed idea of patient autonomy seems appropriate.  If in fact she is competent, she is responsibly using her freedom and has the right to refuse treatment if she so chooses.

Rather than completely rejecting A1 and fully accepting A2, I would propose a slight alteration or rather combination of the two.  I believe patient autonomy should be defined as the patient’s responsible freedom or right to choose the treatment he believes is best for himself.  I still think that it is the competent patient’s right to make decisions, but with this freedom comes an immense responsibility as well.  By combining the definitions, it holds the patient accountable for their actions, but still presents them with the freedom to make their own choices about their health.

 
After reading Hardwig’s argument, I was curious to see how others felt about the concept of autonomy and found an article arguing that autonomy should only be an instrumental value rather than an intrinsic one in terms of medicine.  The author went on to explain that our society over values autonomy in terms of patient wellbeing and that this concept should be rejected.  I am one to greatly value my autonomy and was somewhat surprised after discovering this article.  If we act responsibly, why should our freedom be limited when it comes to our own decisions about health? Before my family travelled to Peru over the winter break, I had to go to the Emory Travel Well Clinic and get specific shots and learn about the risks of travelling to this area of the world. The healthcare professional informed me of a new available vaccine that she recommended, but that I was not required to receive.  However, the vaccine could possibly result in severe side effects.  In the end, I decided against having the vaccine.  Despite the doctor being more knowledgeable on the subject, my autonomy was still respected even if she disagreed with my decision.  I disagree that patient autonomy is overvalued and think it is incredibly important that patients are able to responsibly use their freedom.

Works Cited:

Hardwig, John. “What about the Family?” The Hastings Center Report 20.2 (1990): 5. Web.

Mappes, T. A. & Zembaty, J. S. “Patient Choices, Family Interests, and Physician Obligations.” Kennedy Institute of Ethics Journal, vol. 4 no. 1, 1994, pp. 27-46. Project MUSE, doi:10.1353/ken.0.0065

Thomas, John E, et al. “Case 1.1: When Physicians and Family Disagree.” Well and Good: Case Studies in Biomedical Ethics, Broadview P, 2014.

Varelius, Jukka. “The Value of Autonomy in Medical Ethics.” Medicine, Health Care, and Philosophy 9.3 (2006): 377–388. PMC. Web. 15 Mar. 2017.

In case 5.1, a 22-year-old mother goes into premature labor and delivers a baby in need of “aggressive resuscitation” (Thomas, et al. 186).  With rapid deterioration after only the first 12 hours of life, the baby has a poor chance of survival and high risks of suffering from cognitive disabilities even if she does make it.  Someone must now decide whether or not to withdraw the use of the ventilator, but with the parents in somewhat of a disagreement, who gets the final say and what might affect that decision?

There are many dilemmas at play here and I recognize that the principle of nonmaleficence plays an important role in this case as do the distinctions and rules governing nontreatment addressed by Beauchamp and Childress, but in this discussion I want to focus on the interactions between the parents and the health care professionals.  I find the resident’s statement – “I certainly wouldn’t like to grow up as a cognitively disabled, visually impaired child” – to be completely inappropriate and unprofessional (Thomas, et al. 187).  Respecting a patient’s autonomy or even a surrogate’s decision in this case, means letting a patient or surrogate choose.  These difficult evaluations require us to analyze our values.  Physicians should not recommend values, but rather, provide the facts relevant to the situation.  While others may argue that you seek out your health care professional for advice in times of need, I believe that the resident should not reflect his personal beliefs and values about the meaning of life or limitations of the cognitively disabled, especially since he has no personal experience as a disabled person.  A review of ethical issues involving premature births even agrees by stating that “physicians should be careful to separate their personal views…from current medical, legal, and moral standards of care for such children” (Baer & Nelson, 2007).  Premature birth and the decisions to treat or not treat that accompany it contain this messy gray area.

In a journal discussion by Rebecca C. Thilo, she examines ethical issues in relation to the distribution of emergency contraception.  In one section, she addresses the attitudes and beliefs of nurses who provide emergency contraception to adolescents, who express personal disapproval of such methods and choices.  She explains how “it is ethically unacceptable for health care professionals to penalize patients for their actions” (Thilo, 2012).  Despite the difference in topic, the social judgment the resident expresses can affect and bias the parent’s decision as does a nurse’s critical and disapproving lecture on the uses of emergency contraception.  In both situations, the nurse and resident should not be expressing their personal beliefs or values in order to respect and maintain patient autonomy.  It is the responsibility of the health care professional to present the facts of the treatments and different options available to the patient without immediate personal input.  The resident should not provide personal input, but simply explain the important facts clearly so that the parents make an informed and autonomous decision without influence or judgement from the healthcare professionals around them.

Works Cited:

Thomas, John E, et al. “Case 5.1: Should Treatment Be Withheld from Patients with Severe Cognitive Disabilities?” Well and Good: Case Studies in Biomedical Ethics, Broadview P, 1987.

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

Baer, Gerri, and Robert Nelson. “A Review of Ethical Issues Involved in Premature Birth.” Rev. of Institute of Medicine (US) Committee on Understanding Premature Birth and Assuring Healthy Outcomes. (2007): n. pag. NCBI. Web.

 
Thilo, Rebecca. “Barriers and Biases: Ethical Considerations for Providing Emergency Contraception to Adolescents in the Emergency Department.” Virtual Mentor 14.2 (2012): 121-25. AMA Journal of Ethics. Web

In Case 10.3, Joe Mulroney experiences a fatal reaction to an angiogram.  After Joe’s death, the anesthetist admits that he did not warn Joe of the possibility of death because the risk was so small.  However, Sean, Joe’s son, argues that his father should have been told about the risk of death (Thomas et al., 2014). Should the anesthetist have informed Joe of the remote risks of the procedure?

The anesthetist violated Joe’s autonomy by withholding information about fatal consequences of the procedure.  Joe is considered a competent patient, yet the anesthetist does not respect patient autonomy in that he makes his own judgement in whether or not the risks of the angiogram should be provided. Joe is willing and able to give informed consent for the procedure in that he is not young, ill, mentally impaired, or unconscious, meaning that he is competent in making this decision (O’Neil, 2003).  However, would Joe have agreed to the angiogram if he had known about the possibility of death? How can the healthcare professional respect a patient’s choice, when the patient is not given all of the information to make an informed decision?

Through the intentional nondisclosure of the risk of death by the anesthetist, the moral principles of beneficence and non-maleficence are not upheld. The anesthetist argues that explaining circumstances such as death can be alarming or frightening to patients and that “over 5,000 angiograms had been done there over a decade without a single fatality” (Thomas et al., 2014).

The anesthetist makes an assumption based on a single encounter with Joe that he is “a very reasonable man, and most reasonable people choose the angiogram” (Thomas et al., 2014).  Just because the anesthetist characterizes Joe as a “reasonable” man does not give him the authority to withhold the remote risks of death.  The anesthetist is making a clear choice to withhold information from Joe.

Despite there being three legal exceptions when health professionals are explaining informed consent, none of them apply in this scenario.  In the situation, Joe is not in a case of emergency, he is competent, and has not waived his rights. Even though Joe gave consent to the procedure, he was not fully informed when making his decision. One controversial exception related to the topic of informed consent is the therapeutic privilege, which states that a “physician may legitimately withhold information based on a sound medical judgment that divulging the information would potentially harm a depressed, emotionally drained, or unstable patient” (Beauchamp & Childress, 2009). The facts of the case do not lead us to believe that Joe falls under this category, meaning that the therapeutic privilege does not apply in this situation. The anesthetist thought he was preventing the patient from harm by not providing the information about the risks of death, but I agree with Sean in that it is the responsibility and obligation of the health professional to explain any and all risks of procedures when patients are competent and stable.  The anesthetist should not necessarily be blamed for Joe’s death, but should have explained the possibility of death before Joe consented to the angiogram procedure.

Works Cited:

Beauchamp, T. & Childress, J. (2009). Principles of Biomedical Ethics. Oxford University Press, 7, pp. 127.

O’Neill, O. “Some limits of informed consent.” Journal of Medical Ethics 29.1 (2003): 4-7. Web.

Thomas, J.; Waluchow, W.; Gedge, E. (2014). Well and Good. Broadview Press, 4, pp. 300-302.