UMKC Society for Bioethics
A forum for ethical issues in medicine
Ethics in Medicine
A PHYSICIANS ROLE IN DIRECT-TO-CONSUMER GENETIC TESTS
BRANDELINE JUNGELS
“It gave me answers; it changed my life.”
If you visit a popular direct-to-consumer genetic testing company’s website,[1] you will find heartwarming patient stories with quotes like the one above. Direct-to-consumer (DTC) genetic testing allows a person to send a saliva sample to a company that will sequence his or her DNA and send back a report containing everything from “nonmedical ‘infotainment,’” such as a genetic preference for certain vegetables, to more serious information, such as a genetic predisposition to diseases or cancer.[2] DTC genetic testing is often harmless and can benefit patients, but it also has unintended consequences. Physicians play an important role in educating patients about the merit of these tests and what the results actually mean.
What is good about DTC Genetic Tests?
DTC genetic tests give patients an opportunity to learn about their genetic background and take preventative action if they receive an abnormal result. For example, patients who find out from these tests they are at risk for a certain disease might be motivated to live a healthier lifestyle. A popular genetic testing company advertised on its website[1] one patient story in which a patient who took a DTC test found out she had a BRCA mutation, putting her at more risk for developing breast or ovarian cancer. This prompted the patient to talk to her doctor and genetic counselors “who recommended a course of action, which she followed.”[1] In this case, a patient was able to find out about her genetic risk and take control of her health. It is possible that without the widely available and popular genetic kit, she would have never known she was at risk and would have continued or started behaviors that put her more at risk for developing cancer, such as smoking.
The same company that published this patient’s story shared many others. In some cases, the test helped adopted patients find out about their origins. In other cases, patients were experiencing symptoms that doctors could not figure out, and the genetic test helped point them to a diagnosis. There is no way to tell how much truth comes from these stories, but it is true that DTC genetic kits can help patients get more in touch with their backgrounds and make sense of their health.
What is concerning about DTC Tests?
While DTC genetic tests could be beneficial to some people, patients should be aware that there are several concerns surrounding them. First, there is concern for patient privacy. Since the tests are not given in a healthcare setting, there is speculation whether true informed consent has occurred. Doctor Megan Allyse and colleagues[2] state that even though the tests have a user agreement, it is “often related to future uses of genetic information, not to the testing process itself.”[2] Patients should have all the information they need to make decisions related to their health, but in the case of these genetic tests they may not understand what the test actually does and the risks involved. Furthermore, the results from these genetic tests are not given the same amount of privacy they would be given in a medical setting. DTC companies have the right to “sell aggregate data to third parties or use consumer’s data for research without their awareness.”[2] While identifying information is not available to third parties, selling genetic information could still have unintended consequences especially if it got into the wrong hands.
Another concern regarding DTC genetic testing involves their accuracy. The laboratories that test DNA for DTC genetic testing companies may produce different results than the laboratories used in healthcare settings. Brothers and Knapp[3] report that “A recent study showed that 40% of genetic variants identified in DTC laboratories (using various genotyping technologies) were not confirmed when Sanger sequencing (a rigorous testing method) was employed”. This anomaly may cause patients who think they have a mutation unnecessary stress and could also lead to testing the patient does not need. Brothers and Knapp[3] further explain, “In the same study, several variants that were successfully confirmed by Sanger sequencing had been misclassified as conferring risk for a condition.” Even when the laboratories do detect a true genetic variant (or a true positive, confirmed with Sanger sequencing) they still may give patients incorrect information and cause them undue worry.
What should physicians do about DTC genetic tests?
Physicians can’t, and shouldn’t, stop patients from taking DTC genetic tests, but they should offer guidance. Genetics is an exciting, up-and-coming field, and it is good that it is being shared with the general population. DTC genetic tests give patients answers about their past, their current condition, and their future. Patients shouldn’t be discouraged from curiosity and wanting to play a more active role in their health, but doctors do have the responsibility of teaching patients about the benefits and consequences of these tests. Patients may not know about the privacy and accuracy of these tests, and they should know what they are getting themselves into. Patients also should know that these tests can give them a false hope or panic, so they should consult a doctor or genetic counselor before making any decisions based on results from DTC genetic tests.
1 https://www.23andme.com/stories/
2 https://www.mayoclinicproceedings.org/article/S0025-6196(17)30772-3/fulltext
IMPLICATIONS OF AI IN MEDICINE
HARINEE ARUNACHALAM
Artificial intelligence (AI) systems have the capability to vastly transform delivery of healthcare by improving diagnostic efficiency, treatment outcomes, and pushing past boundaries of medical training. AI can help enhance work flow through precise computational algorithms that diagnose hard-to-catch cancers in early stages, reduce human errors that may result from stress and emotional trauma that healthcare providers face, and even cut costs by enabling virtual care delivery. AI can quickly process large data sets and generate useful outputs, which transcends the decades of arduous training physicians undergo. However, such technology should not fully automate the entire healthcare delivery process and should rather be viewed as “augmented” intelligence tools that possess a multiplicity of benefits to assist healthcare providers.
The widespread incorporation of AI in medicine in the foreseeable future raises noteworthy ethical challenges. One major concern with employing algorithms to diagnose and treat patients is the potential amplification of existing healthcare disparities. Machine-based-learning is initiated through large data sets that humans program into the AI software. Data that underrepresents a certain patient population would render the diagnosis or treatment plan less reliable for those patients. Moreover, financial interests of the developers and vendors of certain algorithms could worsen this disparity, as certain AI that is programmed to maximize efficiency and minimize costs could learn to discourage surgeries altogether for low-income patients without objective evaluation. Physicians who fully honor these recommendations over their own intuition and knowledge would inevitably contribute to this issue. Third-party involvement imposed by the use of AI can complicate the physician-patient relationship, creating ethical concerns of accountability in the event of a medical error. Moreover, it may pose a threat to patient confidentiality, given that machine-learning demands more and more medical information to arrive at a precise conclusion. Experts warn that crucial private health information that AI depends on for efficient diagnosis can be misused and sold by companies, thus HIPAA would have to be updated to regulate data sharing.
As such technological advances rapidly permeate medicine and arrive with promising improvements, it is paramount for healthcare providers to be cognizant of implicit biases and ensure that decisions made with AI still center around the patients’ best interest. Physicians would then have a greater responsibility of assessing the patients’ existing knowledge of how AI plays a role in their care, in order to provide clarity and transparency.
References
https://www.nytimes.com/2019/01/31/opinion/ai-bias-healthcare.html
BIOETHICS AND TRANSGENDER PATIENTS
SRIVATS NARAYANAN
Bioethics, as explained by Tom Beauchamp and James Childress in “Principles of Biomedical Ethics,” is centered on four core principles: autonomy, beneficence, non-maleficence, and justice. These principles direct medical professionals towards emphasizing patients’ wishes, weighing the pros and cons of treatments, and promoting equality in health care. Medical institutions are starting to deal with transgender people and their health issues more frequently, so the medical workforce must keep itself informed on bioethical treatment of the transgender populace.
As transgender people are becoming more socially accepted and recognized, it is important to understand how to ethically interact with transgender folks in health care. It is estimated that 0.6% of adults in the United States identify as transgender [1]. Conservative estimates show that 0.005% to 0.014% adult males and 0.002% to 0.003% adult females also have gender dysphoria, which involves distress regarding a conflict between the gender a person identifies with and the person’s assigned gender [2] [3]. Although transgender people may seem like a tiny proportion of the population, their health care should be brought to the forefront of medical discussions since their importance in medicine has been undervalued.
The historical treatment of transgender patients has been extremely poor. For example, Dr. Paul McHugh, the former chief of psychiatry at the preeminent Johns Hopkins Hospital, has long been actively against transgender medical care and even encouraged the Johns Hopkins sex reassignment clinic to close in 1979 [4]. Additionally, despite recent advancements in health care staff’s treatment of transgender people, 86% of primary care clinicians are willing to provide routine care to transgender patients, while only 69% of them considering themselves capable of providing such routine care [5]. Medical professionals are often not adequately prepared to care for transgender patients, and many of these patients feel uneasy with those providing them health care.
There are many steps that physicians and health care practitioners should take to fulfill all four of Beauchamp and Childress’ principles of bioethics in relation to transgender patients. Using transgender patients’ preferred gender pronouns and their preferred names gives patients a heightened sense of autonomy in a world where they are often subject to naming-related microaggressions. Health care workers should also learn more about gender dysphoria, medical transitioning, and other aspects of the lived experiences of transgender people; doing so will build strong patient-provider relationships by making transgender patients comfortable with their medical staff. A medical team that stresses beneficence and non-maleficence with transgender patients will also contribute to positive health outcomes — 80% of patients with gender dysphoria who received trans-affirmative health care noticed improvements in mental health [6]. Such a focus on trans-affirmative health care would be best for the principle of justice by ensuring that transgender patients are treated equitably.
A medical workforce that is educated on transgender people and how to care for them, both therapeutically and socially, would starkly improve transgender health. Before health professionals can evaluate the consequences of medical treatments for transgender patients, they should consider the ethical implications of their interpersonal treatment of transgender patients.
References
[1] Flores, A.R., Herman, J.L., Gates, G.J., & Brown, T.N.T. (2016). How Many Adults Identify as Transgender in the United States? Los Angeles, CA: The Williams Institute
[2] American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.
[3] Rao, G., & Aparna, B. (2017). A case report of gender dysphoria with morbid jealousy in a natal female. Indian Journal of Psychological Medicine, 39(6). doi:10.4103/0253-7176.219643
[4] Nutt, A. E. (2017, April 05). Long shadow cast by psychiatrist on transgender issues finally recedes at Johns Hopkins. Retrieved from https://www.washingtonpost.com/national/health-science/long-shadow-cast-by-psychiatrist-on-transgender-issues-finally-recedes-at-johns-hopkins/2017/04/05/e851e56e-0d85-11e7-ab07-07d9f521f6b5
[5] Shires, D. A., Stroumsa, D., Jaffee, K. D., & Woodford, M. R. (2018). Primary Care Clinicians’ Willingness to Care for Transgender Patients. The Annals of Family Medicine, 16(6), 555-558. doi:10.1370/afm.2298
[6] Murad, M. H., Elamin, M. B., Garcia, M. Z., Mullan, R. J., Murad, A., Erwin, P. J., & Montori, V. M. (2010). Hormonal therapy and sex reassignment: A systematic review and meta-analysis of quality of life and psychosocial outcomes. Clinical Endocrinology, 72(2), 214-231. doi:10.1111/j.1365-2265.2009.03625.x
ETHICAL IMPLICATIONS OF CRISPR-CAS9
ADIBA MATIN
EDITED BY DEANNE PISARKIEWICZ
Late last year, Dr. He from China allegedly edited the CCR5 gene on two Chinese twins using a gene editing technology called CRISPR-Cas9. The resultant waves in the media, especially the global ethical community, highlight the potential ethical consequences and dilemmas regarding human gene editing.
What is CRISPR-Cas9?
CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) is like a genetic vaccination card. It was discovered accidentally from a basic research project aimed at understanding how bacteria fight viral infection. CRISPR associates with Cas9 and both search through genetic material for a particular code and cause a break. Think of it like a programmable pair of scissors that can cut DNA. Although gene editing technology has been developed in the past, the precision of this technology makes it remarkable. Could this be the answer to genetic diseases? Could we prevent inherited cancers? The potential outcomes of this technology are great, as are the ethical concerns.
Gene Editing
Not all gene editing is the same. There are two types of genes that can be edited, and there are two ways they can be altered. Somatic genes occur in a single cell and cannot be inherited. Only progeny cells from a mutated cell will carry a somatic mutation. Germline genes can be passed down to offspring. Every cell of an organism will be affected by a germline mutation. Either type of gene may be edited for a therapeutic goal or an enhancement goal. Therapy is analogous to medicine: altering a gene to stop a disease process. Enhancement may be thought of like plastic surgery: changing a gene in a “healthy” candidate. The types may be visualized in 4 quadrants. Somatic therapeutic gene editing generally sparks less debate because the edits are healing and cannot be spread to offspring, barring the chances of unfair advantages and disparity. Germline enhancing therapy is both the most controversial but also the most distant, raising questions regarding eugenics and designer babies. This method of gene editing can be spread to offspring and is not “necessary” to stop a disease process. The prospects of altering your child’s muscle strength, intelligence, and beauty confers an unfair advantage to offspring of wealthy parents.
According to UNESCO International Bioethics Committee, germline modifications could “jeopardize dignity of all human beings…and renew eugenics.” This is just one of several ethical arguments that have been presented regarding CRISPR-Cas9. Below, I delineate some of the major ethical dilemmas.
Autonomy
Generally, we value patient autonomy in medical situations. Historically, parents are given autonomy to make medical decisions on the child’s behalf, as long as it does not jeopardize their life. However, the long-term implications of gene editing are not well defined. Thus, the magnitude of impact is hazy. Allowing gene editing with or without drastic consequences may impede on the autonomy of the child.
Non Maleficence
In the case of Dr. He’s CCR5 gene edits, the changes made may actually make the children more susceptible to influenza virus. Furthermore, there have been arguments regarding the ability to effectively prevent HIV transmission in other, less invasive ways.
What would long term and ubiquitous gene editing do to our society? We could narrow the range of human variation. The traits that make people think differently and look differently may decrease. Furthermore, what about the consequences of patients who have “unfavorable” traits? For instance, people with achondroplasia, dwarfism caused by a single gene mutation of FGFR3, may be eradicated. The Little People of America organization has commented on this threat saying that the utilization of gene editing would increase marginalization of people with genetic abnormalities and decrease societal integration.
Justice
This technology will not be available to everyone. The expense and exclusivity can potentially widen the disparity in health and lifespan that already exists between rich and poor. Is it ethical to support technologies that will inevitably make this worse? Furthermore, certain single gene mutations can potentially cause death in patients, like PCKD, Tay Sachs, SMA, etc. Is it society's responsibility to provide expensive gene editing? What would be the cost?
Beneficence
Despite other ethical concerns, CRISPR-Cas9 still has the ability to treat and prevent many variations of human suffering. Thus, a thorough discussion with careful planning and societal limitations are important to ensure that this technology is implemented in the most ethical way.
Cong, L., Ran, F. A., Cox, D., Lin, S., Barretto, R., Habib, N., … Zhang, F. (2013). Multiplex genome engineering using CRISPR/Cas systems. Science (New York, N.Y.), 339(6121), 819–823. doi:10.1126/science.1231143
Nicol, D., Eckstein, L., Morrison, M., Sherkow, J. S., Otlowski, M., Whitton, T., … McWhirter, R. E. (2017). Key challenges in bringing CRISPR-mediated somatic cell therapy into the clinic. Genome medicine, 9(1), 85. doi:10.1186/s13073-017-0475-4
Goldim J. R. (2015). Genetics and ethics: a possible and necessary dialogue. Journal of community genetics, 6(3), 193–196. doi:10.1007/s12687-015-0232-6
AN ARGUMENT FOR THE RECIPROCAL VALUE OF ORGAN DONATION
LANDON ROHOWETZ
In a 2002 New York Times article titled, “The Donor’s Right to Take a Risk,” Ronald Munson discusses organ donation. He argues that, when consent is informed and freely given, living donors can benefit from the donation of an organ.
The procedures required for organ transplantation have no apparent potential for medical benefit for the donor and virtually always involve some risks. With that being said, is it possible for a donor to benefit from donation? If so, how can we determine whether living donors benefit?
In order to for a donor to make a rational choice about donation, consent must be informed and voluntary, and the patient must be competent. That is, the patient must be capable of understanding the relevance and consequences of his or her decision. Also, as Munson states, “A potential donor must be educated about the pain and risks, including death, that the surgery involves…Potential donors must be protected from the overt and subtle pressures of friends and relatives. They must be free to say no as well as yes” (2002, p. 482). If these conditions are satisfied, then the donor is truly capable of autonomous decision making. To determine whether a living donor benefits, we must determine how the competent donor believes they would be affected physically and mentally if they did not donate. In some cases, we can assume that, if the donor did not donate, the recipient would have to wait longer to receive an organ, thus bringing them undue suffering or even death. It is possible that the proposed suffering or death of the recipient would, in turn, bring about mental suffering in the donor. So, by donating, the donor benefits by avoiding his or her own mental suffering. It is reasonable to assume that, at least in some cases, the benefit gained from avoiding mental suffering outweighs the physical suffering that would be brought to the donor as a result of the operation. We can also assume that, in some cases, competent donors use this reasoning when deciding to donate an organ. We should use this reasoning to determine whether a donor will benefit by donating organ, since competent individuals presumably have the best understanding of how certain events will affect their overall well-being.
Moreover, we have a duty to respect the autonomy of competent patients. Thus, by using the donor’s understanding of whether or not he or she will benefit from donation as our measure of determining whether a donor benefits, we satisfy principles of utilitarianism and deontology (respect for autonomy). Therefore, this method should be implemented in cases where it is morally relevant for us to determine whether donors will benefit.
One might object to this argument and say that, although the donor believes he or she will benefit, negative outcomes, including death, may occur, and thus we cannot confidently use the donor’s opinions. However, almost all medical procedures include a possibility for negative outcomes, but, nonetheless, we generally respect the opinions of competent and informed patients because they have the best understanding of their desires and beliefs. Therefore, donors’ opinions on whether or not they will benefit are our best measures of whether or not they will actually benefit.
References: Munson, R. (2002, January 19). The Donor's Right to Take a Risk. New York Times, pp. 483-84.
ETHICAL STANDARDS OF TELEMEDICINE
BRANDELINE JUNGELS
As technology becomes part of everyday life for more and more individuals across the world, it is no wonder that it is finding its way into healthcare. Telemedicine refers to the use of different technologies, such as the Internet and mobile phone applications, to deliver medical care (Chaet et al.). This concept allows patients who live in rural settings or who cannot easily leave their homes to have immediate access to treatment and counseling via their Internet connection. While telemedicine is an innovative means to give more people convenient access to medical care, it carries important ethical implications that healthcare providers should be aware of as its usage increases. First, there is a risk that physicians offering advice through different websites or services may not be qualified to answer every question they receive. Cheat et al. state in the article “Ethical Practice in Telehealth and Telemedicine” that when physicians respond to individual patient concerns, they need to have the “appropriate clinical qualifications and experience”. While physicians are not trained in every specialty, patients who come to them for advice may present with any complication. Therefore, physicians on these websites need to be comfortable admitting when a patient's concerns are outside their realm of expertise and referring patients to appropriate resources. Additionally, there is no guarantee that websites and applications patients visit will be secured, and this may violate the patient’s right to privacy. In the same article, Cheat et al. note that “some encounters are protected under privacy laws” but also state that websites and mobile phone applications “may leak information to third parties”. Physicians who chose to give advice via telemedicine have a responsibility to learn about the privacy practices involved and maintain patient confidentiality. Telemedicine holds great potential for the future of medicine, but it should be approached cautiously until the risks are researched and appropriately managed.
Chaet, Danielle, et al. “Ethical Practice in Telehealth and Telemedicine.” Journal of General Internal Medicine, vol. 32, no. 10, Oct. 2017, pp. 1136-1140. Springer Link, doi: 10.1007/s11606-017-4082-2.
ANIMAL TESTING VS. ANIMAL CRUELTY
MEGHANA KUMAR
Golden Retrievers living in cages for years with atrophied muscles and drool pouring from their mouth as they struggled to eat. That was the footage released from PETA’s website, accusing Dr. Joe Kornegay of animal cruelty as he conducted animal testing by breeding and experimenting on dogs with Duchenne’s Muscular Dystrophy at Texas A&M [1]. The video clip would haunt any viewer and evoke an indignant response. While some may use this clip as a call to stop all canine experimentation some problems exist with such a dogmatic response.
One of the main aspects of the animal experimentation debate is the question of whether or not artificially manipulating the health of an animal is justified. Some schools of thought severely oppose any sort of animal testing, yet the history of medicine repeatedly illustrates how animal testing--especially the penicillin mouse model--has heavily benefitted the health of humans [2]. However, a 2015 survey discovered that 50% of the public opposed “animal research”, while 89% of the U.S. scientists favored it [3]. This 39% difference between the public’s and scientists’ opinions is due in part to an information gap. Most scientists and medical professionals have been educated on the type of procedures and regulations associated with animal testing. For example, the vast majority of animal research is performed on rodents and rabbits does not initiate as much public outrage as research done on domesticated animals such as dogs and cats [4]. In addition there are public policies such as the Animal Welfare Act (AWA) and Institutional Animal Care and Use Committee (IACUC) that regulate animal research [5,6]. Unfortunately, not all labs thoroughly adhere to these laws and regulations, which is demonstrated by the footage of the golden retrievers with DMD. While the PETA footage might suggest that researchers have no concern for animal cruelty, it is clear that public policies have addressed such issues. The problem lies with noncompliance. It is this noncompliance that threatens the continued practice of necessary ad regulated animal testing. Educating the public on the topic of animal testing is necessary to protect both animals and animal research. Initiatives to expose the public to compliant animal research labs would put the Texas A&M footage in perspective. In addition, scientists must diligently work to follow regulations outlined by the AWA and IACUC. As healthcare professional students, we can educate our patients and peers on the realities and necessity of animal testing.
1. https://investigations.peta.org/french-dog-laboratory-animal-testing/
2. http://www.understandinganimalresearch.org.uk/why/human-health/penicillin/
3. http://www.pewinternet.org/2015/01/29/public-and-scientists-views-on-science-and-society/
4. https://www.aphis.usda.gov/animal_welfare/downloads/reports/Annual-Report-Animal-Usage-by-FY2016.pdf
5. https://www.nal.usda.gov/awic/animal-welfare-act 6. https://www.aalas.org/iacuc
PRESERVING ETHICS IN DISASTERS
RACHANA KOMBUTHALA
Hurricane Katrina made landfall near Memorial Medical Center on Monday, August 29th, 2005. The hospital lost electricity and running water. As a result, temperatures inside reached over 100 degrees. The hospital’s backup generators survived the storm, but the increasing flood waters from the sewers threatened to destroy the building. Patients who were able to be evacuated were taken to the helipad in a separate building. The 52 patients at Life-Care, a long term care facility for elderly patients with multiple medical problems, were not taken into account. About 48 hours after Katrina struck, the backup generators began to fail. With no available guidelines for emergency situations, it was agreed amongst the staff to triage the remaining patients into categories 1, 2, and 3, with 3 being the least likely to survive. The patients that fell into categories 1 and 2 were taken to the helipad and emergency room, where rescue boats were beginning to arrive. After several hours, it became clear that evacuation of the category 3 patients would not be possible. Many of the patients from Life-Care fell in this third category and began suffering due to the failure of the machines on which they relied.
Dr. Pou and her team stayed behind to care for these remaining patients. At this point, the staff had not slept in 2 to 3 days and did not have adequate food or water. Dr. Pou decided to sedate some of thecategory 3 patients with injections of morphine for pain and midazolam for anxiety. At this point, it was impossible to get consent from family members for the administration of morphine or any other medications. After 4 days, 35 bodies were recovered from the hospital. Of these, 9 patients were found to have morphine and midazolam in their bodies. A forensic pathologist reviewed the toxicology reports and ruled four of the deaths homicides. Dr. Pou was arrested and charged with one count of second degree murder and nine counts of conspiracy to commit second degree murder.
The prosecution of Dr. Pou is controversial especially because of the emergent nature of the situation. With no available guidelines, it was up to the medical staff to determine the most effective option to rescue the largest number of patients. Based on the utilitarian school of thought, the healthiest, most physical able patients were given priority in evacuation. If patients who were gravely ill or had long term chronic conditions were given priority, it could have put the whole group at risk. Additionally, Dr. Pou was unfamiliar with many of the Life-Care patients and had minimal knowledge of their medical histories. To make matters worse, she had hardly any proper medical equipment.
Louisiana’s Good Samaritan laws remove liability for any damages resulting from a physician who acts in good intent in any emergency situation, but this law does not apply to on-duty staff physicians such as Dr. Pou. However, another Louisiana state law provides immunity for physicians working in emergency situations. The Health Emergency Powers Act states that a physician such as Dr. Pou must act with “gross negligence" or “bad faith” to be civilly liable for the deaths of patients in an emergency situation. The evidence suggests that Dr. Pou was acting to lessen the pain of the remaining patients in her hospital and with the intent of rescuing them if possible. It is difficult to judge her actions solely from the legal perspective due to the lack of laws and guidelines regarding emergency situations. Although the cocktail of drugs she administered might have killed, the grand jury ultimately decided that Dr. Pou did not murder.
THE ATTEMPT TO DEFINE FAIR DISTRIBUTION OF DONOR ORGANS
ANUM AHMED
Ethical dilemmas in the organ transplantation process are primarily due to the limited number of organs available. As the amount of donor organs is clearly outnumbered by the patients awaiting organs, it is necessary to distribute the limited organs amongst the patients fairly. It is difficult, however, to define fair distribution when not everyone can receive an equal part. Does fair organ distribution mean giving to the patients who will benefit the most from the donor organs, or does it mean giving equal opportunity of receiving an organ to all patients?
Current organ transplant systems say that the answer is both. Transplant policies work to balance these two notable ethical principles: equity and utility. Equity involves giving everyone equal opportunity of getting a transplant regardless of race, additional health problems, age, etc. Utility involves distribution of organs to those who are more likely to accept the organ and benefit for a long time.
It is important for both of these ethical principles to coexist in allocation policies in order to provide fairer distribution. If the system was entirely equalitarian, organs may be distributed to those too sick to benefit from the transplant. As organs are given to those with little chance of recovery, patients who are more likely to benefit from the transplant stay on the waiting list and become weaker as time goes by. This can result in fewer people actually benefiting from a transplant by the time they are at the top of the waiting list. If the system was entirely utilitarian, then giving organs only to those who are likely to accept the transplant will prevent certain groups of patients from ever getting a transplant. These groups may include people who are older, people of minority backgrounds, etc. If these groups of people tend to not receive donor organs, then they are more likely to distrust the system and refuse to become organ donors themselves.
Organ distribution systems try to maintain a balance between the ideals of both equity and utility in the selection process, however there are times when the two are at odds with each other. For example, in terms of equity, patients who have applied for a re-transplant should be considered for a transplant at the same level as those applying for the first time. However, re-transplants tend to be less successful than initial transplants, so would it really be fair to give equal opportunity to someone seeking a second transplant as someone seeking their first?
The ethical principles of equity and utility provide a structure for most organ distribution policies; however, health care providers are faced with the task of determining how to properly balance them when they conflict. While organ distribution policies cannot be completely fair due to the lack of donor organs, the combination of equity and utility do help reduce bias and maximize transplantation benefits.
Works Cited
Caplan, Arthur. “Bioethics of Organ Transplantation.” Cold Spring Harbor Perspectives in Medicine 4.3 (2014): a015685. PMC.
Courtney, Aisling E., and Alexander P. Maxwell. “The Challenge of Doing What Is Right in Renal Transplantation: Balancing Equity and Utility.” Nephron Clinical Practice, vol. 111, no. 1, 2008, pp. c62–c68., doi:10.1159/000180121.
Linecker, Michael & Krones, Tanja & Berg, Thomas & U. Niemann, Claus & H. Steadman, Randolph & Dutkowski, Philipp & Clavien, Pierre-Alain & W. Busuttil, Ronald & D. Truog, Robert & Petrowsky, Henrik. (2017). Potentially Inappropriate Liver Transplantation in the Era of the “Sickest-first” Policy - A Search for the Upper Limits. Journal of Hepatology. 68. 10.1016/j.jhep.2017.11.008.
“Organ Procurement and Transplantation Network.” National Data - OPTN, June 2015, optn.transplant.hrsa.gov/resources/ethics/ethical-principles-in-the-allocation-of-human-organs/.
Pence, Gregory E. Classic Cases in Medical Ethics: Accounts of Cases That Have Shaped Medical Ethics, with Philosophical, Legal, and Historical Backgrounds. 4th ed., McGraw-Hill, 2004.
ETHICAL CONCERNS FOR ORGAN SALE
FAREHA HASAN
Decades ago, the process of organ donation consisted of cultivating organs from patients fitting the criteria of brain death; however, in modern times, organ donation is plagued with questions surrounding the harvesting of organs without brain death criteria, obtaining parts from living individuals, and, most importantly, the monetization of organ donation. The American Medical Association has conducted studies investigating if providing financial incentives for individuals to donate their own or their loved ones' organs would decrease the large number of patients who die on waiting lists due to organ shortages. Although the AMA suggests moderate payment options, as more monetary compensation is offered, health professionals fear the process may acquire facets of exploitation and coercion; this is prevalent in many nations where money is offered for transplantable organs. Though historical context should not be the sole factor discouraging the monetization of organ transplants, other professionals worry this shift may in fact decrease the number of donations already occurring, as donors may feel the process focuses on profit and not compassion. Others predict financial compensation may lessen the value and understanding of informed consent among patients and instead lead to swift decision making without considering the health implications of donating an organ. While the organ shortage prevalent in hospitals creates complex challenges, offering financial reward to organ donors would generate other risky ethical issues.
The UMKC Society for Bioethics