Henrietta Lacks has gone to space, won several Nobel prizes, and fueled the multibillion-dollar cell culture industry but she doesn’t know any of this. She hasn’t received accolades or been compensated with a single cent either. How? Because she died of cervical cancer in 1951 at John Hopkins Hospital. Shortly after her death, a biopsy of her tumor was taken for research in a cervical cancer lab but instead of dying like cells had before, her cells reproduced another generation every 24 hours. The cells were shared with other researchers before being mass produced and used to test the first vaccine for polio that ended up extinguishing the disease for good. Permission for doctors to use anyone’s cells or body tissue at that time was normally not obtained so the fact that Henrietta or her family didn’t give direct consent is not surprising.

The part that is unsettling is that even after the 1970’s, when informed consent came into practice, nothing was done to compensate her family. However, I do think it’s important to note that George Gey, the original scientist who worked with the HeLa line, attempted to protect the privacy of the deceased and made the cells available to all interested in biological research at no cost. Biotechnology laboratories and academic research institutions are the ones who continually divided her cells and profited millions while the Lacks family couldn’t afford proper healthcare, not the scientists attempting to cure cervical cancer. Although I don’t believe it’s just to use a person’s remains without their consent, at the time, common practices were followed. The real injustice is that over 50 years later, rich white profit-seeking men are continually exploiting a poor African American woman who lost her battle with cancer.

A somewhat similar but more modern case was presented in 1990 with the case of Moore vs. Regents of California. John Moore had visited the University of California Medical Center in 1976 seeking leukemia from Dr. David Golde. Dr. Golde took cell samples and created a cell-line without the knowledge or consent of Mr. Moore. Moore, a well-educated white man, sued for a portion of profits gained from his own body upon finding out that Dr. Golde was attempting to sell the line to Genetics Institute, a biotechnology corporation in the commercial application field. The Court did not agree with Mr. Moore as they concluded that bio-medical research would be undermined if individual patients had the power of profit from medical advancement as a result of their own physical make-up. It said nothing about the implications of profit on the researchers side. This decision made a blanket statement that says medical researchers have the ultimate right to body tissues of patients for private gain.

The issue boils down to Henrietta’s autonomy versus the principle of benevolence in reference to the lives that were saved with research involving cell research. The obvious benefit is the obliteration of polio and the lives and resources saved in doing so. However, does this benefit to society justify violating a patient’s autonomy? I do think the benefits to advancement in the medical research field are significant but I don’t believe that justifies exploiting a patient for profit. Dr. Gey’s collection method isn’t ethically sound in our eyes but when the cells were taken, common practice was followed. Does that make him excused from the controversy on grounds that his intentions were pure? Or should he still be held accountable for all the implications that followed? Lastly, how does Moore vs. Regents of California affect future patient rights? I look forward to hearing what you all think about the controversy!

Resources:

Moore v. Regents of the University of California. (n.d.). Retrieved from http://www.casebriefs.com/blog/law/property/property-law-keyed-to-cribbet/non-traditional-objects-and-classifications-of-property/moore-v-regents-of-the-university-of-california-2/

Skloot, Rebecca, The Immortal Life of Henrietta Lacks (New York: Random House, 2010)

The question that Ackerman presents at the beginning of the piece is something that I’ve pondered even before our class discussions. Does non-interference really respect patient autonomy? The answer is contingent on the situation. Time has a lot to do with how a patient absorbs, processes, and responds to a given situation. Humans are adaptive beings and our individual perception of normal is fluid. Children often see shadows and believe there are monsters in their closet so they are afraid of opening the door but through experience learn this is normal and a part of life. Though it may be a simple example, this is how we compile schemas over time.

Coping mechanisms change with time and with illnesses, this is often the case: you learn that this is the present and the past is no longer where you are in the time spectrum. When the situation is new and unfamiliar it sometimes over reaches our already “programmed” mechanisms and we are forced to develop a new schema (Hack, 237). I personally experienced this at the beginning of the fall semester I was diagnosed with Lyme disease, a condition that causes joint pain, fatigue, and severe headaches and is often accompanied by cognitive impairment. Symptoms are hard to manage not only because of the variety but also because intensity varies from day to day and recovery is not linear. The research is limited and often inconclusive, leaving most physicians unqualified to treat the disease. Therefore, many patients, like myself, heavily rely on the advice and expertise of a specialist. Pelligrino’s point that “The state of being ill is therefore a state of ‘wounded humanity’, of a person compromised in his fundamental capacity to deal with his vulnerability” is spot on (Ackerman, 15). Not only are long-term goals affected but the way in which one goes about their daily routine can be abruptly altered. I went from being able to practice for 2 hours a day to being unable to physically lift myself out of bed.

Experiencing intense physical pain with little relief is uncomfortable but the cognitive constraint is much worse. I was so overwhelmed with the new day-to-day me that I lost the ability to confidently make choices. It could take me an hour to make a simple decision of what cereal to eat for breakfast and even after I finished the bowl I was still unsure if I made the “right” decision. The immense pressure that new patients feel to make only “right” decisions is mentally and emotionally taxing and can compromise the patient’s own autonomy (Schofield, 2). The argument can be made that considering the situation, although competent, I was not in any condition to give informed medical consent and neither was my family. It’s necessary to acknowledge the slippery slope of violating patient autonomy when the physician takes on the responsibility of decision maker but before the patient has adjusted to their new normal it may be necessary for their long-term well being.
Ackerman, T. F. (1982). Why Doctors Should Intervene. The Hastings Center Report, 12(4), 14. doi:10.2307

Hack, T.F., and Degner, L.F. (2003). “Coping responses following breast cancer diagnosis predict psychological adjustment three years later.” Psycho-Oncology, 13(4): 235-247.

Schofield, P. E., Butow, P. N., Thompson, J. F., Tattersall, M. H., Beeney, L. J., & Dunn, S. M. (2003, January 01). Psychological responses of patients receiving a diagnosis of cancer. https://academic.oup.com/annonc/article/14/1/48/130229/Psychological-responses-of-patients-receiving-a

Here we consider two very different yet similar cases. Carole Jones is an elderly woman living in Edmonton, Canada where she’s suffered several cardiorespiratory arrests causing paralysis of her breathing muscles. The physicians have stated there is no possibility of restoring those muscles and she’s been in the ICU for several weeks in a semi-conscious state. Her son wants his mother to return to her homeland Jamaica before dying as their religious beliefs suggest her soul will be condemned if not on native soil. On the other hand, John is a 26 year-old man with “the elephant man’s disease” where non-malignant tumors attach themselves to the body’s nerves. He’s undergone over 100 surgeries in his life to remove tumors that lead to total deafness and partial blindness, almost complete paralysis, and total impairment of the breathing muscles. He is fully alert and conscious, deeming him competent and able to make rational choices. Both Carole and John are dependent on their respirators to prolong their lives, however Carole (and her Son) wants to remain on the respirator until she returns to her home while John is requesting that he be disconnected.

The first thing to consider in either case is whether or not anyone has the right to take someone off of life support or neglect to resuscitate him or her. If a patient has a pre-planned do not resuscitate (DNR) before experiencing whatever trauma brought them into the care of the physician, I say honor their longstanding request. In a case like Carole’s, and accepting the sanctity principle, I do not believe the physician has the right to override the son’s request and issue a DNR because that clearly goes against rules of patient autonomy. Although John’s situation may require a more morally daunting task for a physician, it’s a more reasonable circumstance because of his clear competent state and lengthy medical history that gives a detailed description of his quality of life. It does put the physician in a precarious situation because they have to directly intervene in order to fulfill the patient’s wishes in being disconnected from the respirator and end his life, no matter what the quality.

Either suggested situation ends in the ultimate death of the patient based on approval from a medical professional. But are we really dealing with the same decision in both cases? I say we are looking at two morally unique events because one is passive while the other requires direct action. Subscribing to Becker’s suggestion, issuing a DNR doesn’t cause death; it merely allows nature to take its course (Thomas, 213). It also should be noted that in practice, resuscitations aren’t as successful as we make them out to be, as only about 20 percent of older patients make it out of the hospital after suffering cardiac arrest (Graham, 1). Disconnecting the respirator is an intervention that should be approached with caution even when deemed appropriate because the decision made is irreversible and both parties are responsible for the an almost guaranteed death where as the physician cannot be held accountable for a DNR if previously arranged.

Braddock, James, “Do Not Resuscitate (DNAR) Orders” University of Washington School of Medicine

https://depts.washington.edu/bioethx/topics/dnr.html

Graham, Judith, “New Data to Consider in D.N.R. Decisions” The New York Times

Thomas, John, Well and Good

This case deals with a woman, Marie, who has just undergone surgery to remove both ovaries and soon after had a splitting of the suture, which caused colon leakage. Besides that issue, she was stable and able to communicate. When the physicians explained she needed another operation to fix the potentially fatal matter, she refused stating that she no longer trusted their medical staff after the problematic first surgery and would call the police if they attempted to operate. Her family did not agree with her reasoning and her son, Jacques, who claimed his mother was in a compromised cognitive state, threatened to take legal action if the physicians did not operate (Thomas et al., 2014).

As a decision is made, we consider weighting two principles: patient autonomy and physician’s obligation (Beauchamp, 2009). The patient clearly expressed her wishes and it is the responsibility of the physician to respect that. In this case, the physician’s obligation to provide necessary medical treatment is in direct conflict with the obligation to respect the patient’s autonomy. Which principle has greater value? As stand-alone rights, neither remains valid. If patient autonomy and refusing treatment were an absolute right, then medical ethics would boil down to just the wishes of the patient. On the other hand, physician’s obligation as an absolute right would mean their word trumped all, disregarding the patient as an object. Neither is the case, and therefore some kind of middle ground needs to be found in order to reach a decision to act or not.

Another component of making a decision is the question of Marie’s competence. It comes into play when her son arrives at the hospital and deems his mother incompetent. Her refusal to consent to the operation is taken at face-value in the beginning, as she appears to be fully competent. But what else has to happen in order for her consent to be deemed legitimate? For her consent to be considered valid, two criteria have to be met: necessary and sufficient information must be presented and that information must be presented in a manner familiar to the recipient (Appelbaum, 2007). The physicians seem to stress how critical this procedure is to her survival and provide relevant information to aid her in making an informed decision so in my opinion, they have done due diligence. So if she is determined competent, her consent should be considered valid. However, if her competency remains in question, who else can consent to the surgery?

If it can be demonstrated that Marie’s judgment is out of character and irrational, her expressed wishes do not have to be respected by her physicians. In that case, surrogate consent can be granted to her family and they are responsible for “promoting the patient’s best interests” (Thomas et al., 2014). There is much ambiguity in this description and it shows the consistent struggle between the two principles at either end of the argument. To promote Marie’s best interests her son should consider not only the importance of his mother’s survival but also honoring her values that are in direct opposition of the first point. Simply put, it’s a decision of life and quality of her potential future life. If her survival meant a lifetime of pain and suffering, then death being the favored option can be considered rational. But since the second surgery gives her a much better chance at survival and full recovery, I believe if her son is granted surrogate consent, he should promote her best interest for the future, which is to go through with the second operation.

Sources:

Appelbaum PS. Assessment of patient’s competence to consent to treatment. New England Journal of Medicine. 2007; 357: 1834-1840.

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 7th ed. New York: Oxford University Press, 2013. Print.

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