Doing What's Ethically Best

This summer I became deeply intrigued by the different ethical aspects and controversies that fill the medical field, but it was only recently that I discovered principles that are considered when trying to weigh the benefits and pitfalls of medical procedures. These four major bioethical principles are Respect for autonomy (respect the decisions made by patients), Nonmaleficence (do not harm the patient), Beneficence (any procedure must be done with the intent to benefit the patient), and Justice (fairly distribute benefits, risks, costs, and resources).

However, it wasn’t until I looked into a surgery procedure called Hematopoietic Stem Cell transplantation that I discovered that even these ethical principles, which are meant to resolve disputes, have controversies themselves. The irony.

Before I dive into what this transplantation is, I want to acknowledge what Sickle Cell Disease is. Sickle Cell Disease (SCD) is an inherited hemoglobinopathy (red blood cell disorder) — affecting approximately 70,000 to 100,000 Americans — in which the red blood cells are shaped like sickles (“Sickle Cell Disease”). The problem with these sickled cells is that they can get stuck and inhibit blood flow and cause pains and infections while also making it impossible for healthy red blood cells to carry oxygen throughout the body by themselves (“Sickle Cell Disease”). Like many other diseases and cancers, there is no guaranteed cure, but researchers are currently looking at new drugs and what seems to be a successful cure to sickle cell disease — Hematopoietic Stem Cell Transplantation, also commonly referred to as bone marrow transplantation (“Sickle Cell Disease”).

So what is the bone marrow? The bone marrow is a soft, spongy area at the center of many bones that is responsible for producing new “hematopoietic stem cells” that can develop into red blood cells, white blood cells, or other platelets (Negrin). The bone marrow in individuals with SCD cannot replace all these sickle cells and eventually cannot keep up and supply enough healthy red blood cells. This is when bone marrow transplantation becomes necessary. In this procedure, patients undergo high doses of chemotherapy or radiation to destroy the sickled cells (unfortunately, healthy cells are killed as well). Then, they are given a healthy supply of stem cells so that they regenerate their blood cell reproduction (Nagrin).

And just like many other treatments, HSCT has its ethical concerns especially due to the risk of life-threatening acute complications and organ toxicity (Liso). Questions begin to arise: Who should opt for transplantation? Who shouldn’t? And it all comes down to one specific ethical principle, or at least it may seem so at first: Nonmaleficence. Surgeons are told to make it their utmost priority to “do no harm,” so how can they ensure this? Many argue that because HSCT has a 95% chance of cure to sickle cell disease, it should not be offered to patients unless the patient has serious complications or the possibility of dying in the short term (Nickel). In such cases, they offer the hydroxyurea treatment, which has higher chances of survival and has been found to have significantly reduced “pain and acute chest syndrome episodes” in children (Nickel). Surgeons see this treatment as not only a viable alternative to the HSCT but also a way for them to stay true to the Principle of Nonmaleficence.

Doctors and surgeons have attempted to set limitations as to when HSCT should be offered to patients. Some opponents of HSCT believe that it should not be offered to patients with “low risk in terms of SCD severity” (Nickel). So how can one determine if a patient’s condition is at “low risk”? How can one — even if it be a researcher or doctor — predict a patient’s condition in the future? And be sure that what may seem minor at the moment may not develop into something far worse in the future? The simple answer to these questions is that they can’t. They can try to do what’s best for the patient’s best interests in the short-run, but it is rather difficult to predict the future, which is why surgeons need to be careful when they say that someone has a “low risk in terms of SCD severity”.

Another issue with the Nonmaleficence argument is that there is evidence that shows that there is more harm that comes with performing HCT too late. Most of the time, “the insidious organ

damage from SCD begins in infancy” and therefore, early HCT has the potential to prevent permanent dysfunction from SCD (Nickel). And for this reason, HCT should not be dismissed too early especially if one is considering it in the future.

One of the most significant problems with the Nonmaleficence argument is that it comes into conflict with another bioethical principle — “Respect for autonomy” (Nickel). All these principles have equal value in healthcare and for that reason, it is also important to remember that a doctor’s job is to not only harm a patient but also ensure that they respect their patient’s decision. Regardless of what they believe might be best for their patient, they must hold onto all aspects of these principles — something that is often very difficult to do.

In order to find a middle ground in which all four ethical principles can be upheld, patients and their physicians can engage in “shared decisions with the physician educating and advising and the patient making the final decision” that they believe is best for them (Nickel). In this manner, a patient and their physician can have a mutual understanding while holding onto their ethical obligations and praying for the best.

__________________________________________________________________________________

Works Cited

Jahn, Warren T. “The 4 basic ethical principles that apply to forensic activities are respect for

autonomy, beneficence, nonmaleficence, and justice.” Journal of chiropractic medicine vol. 10,3

(2011): 225-6. doi:10.1016/j.jcm.2011.08.004.

Liso, Arcangelo et al. “Hematopoietic Stem Cell Transplantation: A Bioethical Lens.” Stem cells

international vol. 2017 (2017): 1286246. doi:10.1155/2017/1286246.

Negrin, Robert S. UpToDate, 2020, www.uptodate.com/contents/hematopoietic-cell-transplantation-

bone-marrow-transplantation-beyond-the-basics#H1.

Nickel, Robert Sheppard et al. Ethical Challenges in Hematopoietic Cell Transplantation for Sickle

Cell Disease. Biology of Blood and Marrow Transplantation, Volume 24, Issue 2, 219 - 227.

Sickle Cell Disease. www.hematology.org/education/patients/anemia/sickle-cell-disease.