Ethical analysis and news from the Fordham University Center for Ethics Education,The Master of Arts in Ethics and Society provides students with a cross-disciplinary foundation in the application of moral and ethical theory to social issues.
Dr. Fisher plans to welcome back returning fellows of the HIV/Drug Abuse Prevention Research Ethics Institute along with the recently selected incoming fellows this July. The fellows will participate in an intensive 8-day program led by faculty experienced in HIV research and ethics and receive guidance for the development of their funded Mentored Research Project. The training grant, sponsored by the National Institute on Drug Abuse, aims to increase investigator capacity to conduct ethical research and create a sustainable community of researchers advancing the field of HIV and drug abuse research.
The Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI), now in its 9th year, is a training grant sponsored by the National Institute on Drug Abuse (NIDA) (R25 DA031608-08), Principal Investigator, Dr. Celia B. Fisher, Director, Center for Ethics Education). The RETI provides early-career investigators in the social, behavioral, medical and public health fields with an opportunity to gain research ethics training. In doing so, RETI addresses the urgent need for HIV and drug use investigators who can identify and address ethical issues, engage drug using and other at-risk communities in the construction and evaluation of population sensitive research protections, and generate empirical data to inform ethical practice and policies for HIV prevention science. Through their funded Mentored Research Projects (MRP), RETI fellows generate empirical data, publish their findings in a variety of high-impact academic journals, and are trained to apply for increasing grant opportunities.
The program’s aims are to: (1) increase trainees’ knowledge of and capacity to address key ethical issues in HIV and drug abuse prevention research; (2) increase trainees’ capacity to ethically engage participants and communities in the construction of participant protections that reflect the values and merit the trust of all stakeholders in HIV and drug abuse prevention research.; (3) increase trainees’ capacity to conduct research that will generate data to inform HIV and drug abuse prevention research practices and policies; and (4) create and sustain an information and communication network for trainees, faculty and others in the field for enhancing ethical knowledge, ethical dialogue and future professional collaborations in HIV and drug abuse prevention research ethics.
Numerous religions push back against medical science when it conflicts with their religious beliefs. Human embryonic stem cell research is one such issue that regularly experiences push-back as it introduces an ethical challenge to many religious communities. However, according to Muslim beliefs, the research should be considered ethical and permissible by most followers, as the embryo is destroyed long before it has developed into what is considered an individual with rights. Still, many struggle with the practice’s permissibility and the ethics surrounding it. For those who do, it is important to consider a respect for life, referring to individuals who are vulnerable, but have proven themselves as viable and pious Muslims. Together, these matters of when life begins and a respect for life suggest that human embryonic stem cell research should be ethical and permissible according to Islamic texts and beliefs.
Stem cells are being extensively researched all over the world today to treat countless diseases and injuries, because they have the unique ability to differentiate into any specialized cell or become many more stem cells. This research stirs ethical disagreements, because one of the most frequently used types of stem cells are human embryonic stem cells (HESC). HESCs are removed from an embryo “around the fifth day of the embryo’s development” and because the process “eliminates the potential for further development” it raises the question of whether the process kills a human life (Sigel, 2018). To determine whether HESC research should be considered permissible in Muslims communities, researchers can study the traditions of when life begins and the respect for life according to Islamic texts and beliefs. By exploring these factors, one can deduce whether HESC research is ethical and therefore, permissible from the perspective of Muslim communities.
Most Muslims disapprove of harming or destroying a fetus once ensoulment occurs, because an individual earns their rights at that moment according to most understandings of Islamic texts (Katz, 2003). There are three general opinions of when ensoulment occurs in Islam. Most Muslim groups agree with a report from Ibn Mas‘ud, one of the first converts to Islam and a loyal companion to the Prophet Muhammad, that states: “Each of you is gathered in his mother’s womb for forty days; then [he is] a clot of blood for the same period; then he is a clump of flesh for the same period,” (Katz, 2003). Following these 120 days “the spirit is breathed into it,” (Katz, 2003). The individual is then ensouled with “[his occupation], his livelihood, his span of life, and his felicity or damnation,” (Katz, 2003). A number of Hanbali, a traditional school of Muslim thought, and Maliki, a school of Muslim thought based on the Prophet Muhammad, argue an individual “gains the status of protected human life” much earlier than 120 days after conception (Katz, 2003). For them, only in the first forty days is abortion permissible, because at that stage the embryo or fetus “is not definitely known to be anything at all”, but afterwards is unacceptable as it becomes clearer the woman is with a child (Katz, 2003). Lastly, some Shafi‘i, those who attempted to resolve the conflicts in Islamic practices, and more conservative Maliki claim that “it is forbidden to take steps to expel the semen at any time after it has been implanted in the womb,” (Katz, 2003).
Although various schools of Muslim thought have conflicting beliefs of when ensoulment occurs, none of them overtly disagree with the process that is undergone in HESC research. Those who believe in the first two arguments, that ensoulment and the receipt of rights occur long after the fifth day of development, should view the act as far from a crime even though it destroys a potential life. However, like many Christians, the Muslim Shafi‘i and conservative Maliki might be more hesitant as they believe in the beginning of life at fertilization. One of the crucial differences, however, is that they reference fertilization and implantation in the womb, while HESC research involves in vitro fertilization. Numerous modern scholars also reference how if a fertilized ovum does not attach to a uterine wall, its exit and death are indeed permissible since these events occurred “before a pregnancy [was] determined,” (Bowen, 2003). By these means, an embryo fertilized in vitro and destroyed for the purpose of HESC research should not be viewed sinfully, because it was neither created in the womb nor an act of eliminating a determined pregnancy. Still, some conservative Muslims might simply disagree with the fact of using egg and sperm cells for purposes other than reproduction.
While some religions often cite sex for reasons other than reproduction or the use of contraception as that which is sinful, Islamic traditions generally do not. Although bearing children and raising them to be pious is important to grow the Muslim community, scholars reference the fact that if the pregnancy is prevented before “the womb takes hold of the semen” it is indeed permissible, because this is “a state preceding existence,” (Katz, 2003) In other words, the egg and semen are not yet an extant being at this stage, but rather simple cells as mentioned before. So long as the egg and sperm are simply seen as cells preceding a being’s existence, their use for something other than reproduction is indeed ethical and permissible.
Al-Ghazali and other Muslim scholars often return to the idea that cases should also be evaluated individually rather than applying a blanket statement to all (Katz, 2003). Katz writes that “the flexibility and openness of classical Islamic legal discussions” is possible due to a commitment to “the examination of specific cases rather than the generation of abstract rules,” (Katz, 2003). By these means, even those who still wonder about the morality of the embryo’s destruction should keep their minds open, as this case may be permissible when weighing its effects. With respecting life being prominent in Islam, the potential to better viable, pious, and vulnerable Muslims’ lives can have considerable weight on this issue.
Respect for life takes two forms in Islamic discourse, the importance of the individual and the welfare of the community (Bowen, 2003). While the importance of the individual is not to be disregarded, the weight of the community’s welfare is significant in this relationship. Bowen writes, “Muslims treat respect for life as basic to the religion, but not as the supreme ethical principal to which all others give way” instead the respect for life should be “relative to other considerations,” (Bowen, 2003). The Qur’an repeatedly highlights “the duty to take particular care of those who are vulnerable,” and while some might argue that this includes those who have the potential to life, it is also crucial to consider the elderly and sick, who would benefit from future HESC treatments and who have also already proven themselves as devout and pious followers (Bowen, 2013). Bowen’s reference to relativism suggests that one should at least consider weighing these two, a potential life and an already viable, pious and vulnerable Muslim, against each other. Those who argue that egg cells, sperm cells, and embryos have the same rights as an individual, must consider whether an individual whose character is unknown is of greater value than the individuals who have already proven themselves viable and pious, but unfortunately are suffering due to a disease or condition.
While Al-Ghazali suggests, “the development of potential life should be accorded respect and protection,” nearly all Muslims agree that the welfare of the mother “precedes any concern for the fetus,” (Bowen, 2003). This same concept, that a pious and extant being’s welfare precedes an unborn child’s welfare, may suggest that a sickly member of the Muslim community might also have greater value over a clump of cells’ potential life, especially when that clump is far from proving itself viable and pious as an individual. When one considers that a single embryo or its preceding egg and sperm cells can develop into millions of stem cells and that those countless HESCs can help further research for the benefit of the community, it becomes increasingly likely that from a Muslim perspective HESC research would be ethical.
Bowen, Donna Lee. “Contemporary Muslim Ethics of Abortion.” In Islamic Ethics of Life, 51-80. University of South Carolina Press, 2003.
Katz, Marion Holmes. “The Problem of Abortion in Classical Sunni Fiqh.” In Islamic Ethics of Life, 25-50. University of South Carolina Press, 2003.
Photo courtesy of Argenis Apolinario, Bruce Gilbert, John Haubrich, and Chris Taggart
Celia B. Fisher, Ph.D., Marie Ward Doty University Chair in Ethics, Director of the Center for Ethics Education and Professor of Psychology, delivered the keynote address at the Graduate School of Arts and Sciences Diploma Ceremony on May 18, 2019.
Dr. Fisher reminded graduates that their education at Fordham was not limited to their specific field. Whether in the Cybersecurity or English department, she pointed out that faculty members nurture their students’ “moral imagination – the ability to combine knowledge and empathy to envision new and creative ways to address complex ethical issues.” With no shortage of pressing ethical issues to challenge graduates’ moral imagination, she reminded students they have been bestowed with a greater responsibility to “live a life beyond oneself.”
Speaking to graduates with careers in academia, research, or public service ahead of them, Dr. Fisher shared anecdotes from her own life and how her sense of self-reflection and morality evolved. She spoke of idealizing the objective scientific method as a young developmental psychologist, but began to question her approach after she became a parent. Did the parents of the children she was studying understand the risks and benefit of these scientific investigations? What was their experience like? With these questions in mind, Dr. Fisher explained how she shifted towards the study of research ethics. Even though she is now leading voice in the field of research ethics, she spoke about her continuous reflection on social inequities and her efforts to ensure that the voice of vulnerable populations reach federal regulators and policy makers.
Fisher shared her career experiences with the recent GSAS graduates.
Regardless of their future career paths, Dr. Fisher encouraged graduates to conceive of their future endeavors as “moral activities that require humility and openness to others” if they are to “contribute to the evolution of a just world.” Dr. Fisher ended her address assured of Fordham students’ dedication to a more just world. She concluded, “As you enter this exciting new phase of your life, I am confident that your future work will be informed by a moral community composed of all members of society and that you will continue to apply your moral imagination to achieve social and environmental justice in these challenging times. I look forward to that future.”
Scientific research takes pride in the multitude of new, modern medical advancements through pharmaceutical, surgical, and therapeutic interventions. However, one of the most prominent issues in today’s population is not the development of new life-saving drugs, but rather the abuse of already established medications. Healthcare has reached the point to which physicians are forced to over-prescribe medications, especially powerful opioids and pain supplements. In turn, America is experiencing the effects of rising addiction cases in patients. Unfortunately, because the epidemic is so new, there is little previous research on the best form of treatment for these suffering patients. In addition, it is not known how patients who are addicted to such serious medications will react to clinical trials aiming to research their disorder. In this essay, I plan to analyze the ethical implications of having research subjects who are actively on mind-altering drugs at the time of study consent and throughout participation. I believe that as long as the processes of consent are comprehensive, the patient is fully aware of what he or she is agreeing to, and there is an open, reciprocal relationship between the investigator and the participant, the study is justified to work with drug-addicted subjects.
This past summer I interned for a public health research organization working on a new clinical trial. This trial was testing a new treatment plan for patients suffering from an opioid use disorder in low-income areas. I worked alongside the patients throughout the program, and collected data on their progress in order to learn how to help their addictions in a comprehensive way. The patients generally seemed appreciative for our help. However, at times some were agitated by our frequent, mandatory visits and use of biological samples even though they consented to all aspects of the study at the beginning of the research period. Many participants would also fail to show up to required visits or check-ins and therefore relinquish their participation in the study without completing the full treatment. This experience raised a few fundamental questions about a participant’s full and true consent. In order to be a part of an addiction study, a participant is assumed to be currently using the medication or supplement that the investigator is researching. However, how can a participant consent if these drugs have the ability to alter states of consciousness, modify memories, or force patients to make regretful decisions at the time of being actively under the influence?
The Belmont Report, which summarizes the basic ethical principles of conducting a research study, mentions the following concerning participant consent: “Respect for persons requires that subjects, to the degree that they are capable, be given the opportunity to choose what shall or shall not happen to them,” (Ryan et al., 6). Respect for persons addresses the basic principle of protecting the rights of human subjects. This emphasis on the participant’s capability of consent is important in studies including addicted participants. If being under the effects of drugs is the subject’s normal state of function, then it can be concluded that this is the state they make many other decisions concerning their lives. The report also includes the responsibility of the researcher to keep the participant as comfortable and informed as possible with the study’s work. The report stresses that, “It is necessary to adapt the presentation of the information to the subject’s capacities. Investigators are responsible for ascertaining that the subject has comprehended the information,” (Ryan et al., 7). Therefore, if the subject is under the influence of drugs, it is the researcher’s job to adapt its consent policy to be most beneficial, and informative to the participant under these circumstances. As evident in previous research with addicted subjects, “[investigators] found support for previously reported components of the therapeutic misconception, as well as for two core concepts that differently influence comprehension of informed consent information for the drug users in our study,” (Fisher, et al., 2). This research compared patients sober and on addictive drugs and their understanding of research. It pleads for studies to provide extra safeguards against any misunderstandings. An example of an improvement to this primary stage would be a comprehension quiz at the end of a consent packet to make sure the participant understands all the prevalent information. An additional method could utilize a form of continuous consent that must be re-signed once a month to make sure the subject has not forgotten and important risks or benefits to the study process. These processes will not only allow the patient to feel more comfortable and aware, but will also let the researcher continue the study itself without any ethical hesitation.
The Belmont Report also comments specifically on volunteers whose comprehension is limited. It has been proposed that for patients with serious limitations, a third party should be involved in consent: “Respect for persons also requires seeking the permission of other parties in order to protect the subjects from harm. Such persons are thus respected both by acknowledging their own wishes and by the use of third parties to protect them from harm.” (Ryan et al., 7). Although this point is a fair rebuttal for those with significant limitations, this does not seem relevant for subjects under the influence of opioids. If the participants are still able to live independently while on the drug, a third party would not be needed to sign additional consent. In addition, these studies could not have a serious enough risk for a third party to be involved as IRB guidelines would not allow this.
The biggest issue of a study including drug addiction research is the vulnerability of the participants. They are able to be a part of the project because they are addicted to a debilitating drug or medication. The need for quick and efficient help can make any form of benefit or reward more valuable as the situation is dire. This can lead participants to consent to studies because they think it is the only option, and do not fully pay attention to risks. As the Belmont Report warns, “inducements that would ordinarily be acceptable may become undue influences if the subject is especially vulnerable,” (Ryan et al., 8). With this information, researchers should make sure to make known to the patient all treatment services available, and direct them to other help centers if they refuse a trial.
In addition, the relationship between the researcher and patient must be positive and supportive. There are levels of trust for drug populations, as many Americans who are using drugs such as opioids may not be buying them legally. The patient can also easily begin buying legally and transition to other methods of use and stronger medications such as heroine. If the investigator shames the participant or considers legal action against them, then the participants are not in a safe research environment. If careful consideration of subjects is ensured from the beginning, then the methods of consent and the relationship between the subjects and the teams should be respectful and trustworthy.
As evident in drug statistics, wide ranges of individuals are seen in affected by this epidemic. Although there are trends, there is no one race, class, or gender that is solely the addicted population. Stated in Addiction Research Ethics and the Belmont Principles: Do Drug Users Have a Different Moral Voice?, “the life situations of individuals who use illegal drugs on a regular basis combined with the socio-ecological context in which addiction science is conducted often raise unique and unexpected conflicts between different ethical principles,” (Fisher). Every patient entering the study will have a different story. It is important to not only respect the person, but also try to cater to the participant in an individualized way while still keeping the integrity of a standardized study.
From the above examples, it is clear that although studies involving opioid addicts can be very effective, this subject group should have a careful set of precautions built into research guidelines for their benefit. The participants should have as clear a consent process as they are capable, as well as an honest relationship with the research staff in case of any questions or concerns. It is evident from previous research that this population is vulnerable. Therefore further ethical study is recommended while the population finds out more about this epidemic, and the people who suffer from addiction every day.
Fisher, C. B. (2011). Addiction research ethics and the Belmont principles: Do drug users have a different moral voice?. Substance Use & Misuse, 46(6), 728-741.
Fisher, C. B., Oransky, M., Mahadevan, M., Singer, M., Mirhej, G., & Hodge, D. (2008). Marginalized populations and drug addiction research: realism, mistrust, and misconception. IRB, 30(3), 1.
Fry, C., & Dwyer, R. (2001). For love or money? An exploratory study of why injecting drug users participate in research. Addiction, 96(9), 1319-1325.
Hall, W., Carter, L., & Morley, K. (2003). Addiction, neuroscience and ethics [editorial]. Addiction (2003) 98: 867-870 doi: 10.1046. Addiction, 98, 867-870.
The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont Report. Ethical principles and guidelines for
the protection of human subjects of research. 1-10.
Israel, M. (2014). Research ethics and integrity for social scientists: Beyond regulatory compliance. London, : SAGE Publications.
Measles cases have been skyrocketing this year even though the disease was declared eliminated in 2000. However, a critical number of parents have chosen not to vaccinate their children, giving the preventable illness the chance to spread.
Guatemalan Teen Falls Ill, Dies After Transfer to U.S. Border Shelter
“The boy was the third migrant child to die in federal custody in the past five months, as a soaring number of Central American families and unaccompanied minors have been trying to enter the United States via the southern border. Advocates for immigrants called for an immediate investigation into the death, which was disclosed on the day that the White House sought emergency funding from Congress to address the border influx, including billions of dollars in humanitarian aid that could increase HHS shelter capacity from nearly 13,000 migrant youths to more than 23,600.”
Trump Sues Deutsche Bank and Capital One to Block Compliance With Subpoenas
“The House’s Intelligence and Financial Services Committees issued subpoenas to Deutsche Bank, a longtime lender to Mr. Trump’s real estate company, and other financial institutions two weeks ago, seeking a long list of documents and other materials related to Deutsche Bank’s history of lending and providing accounts to Mr. Trump and his family. People with knowledge of the investigation said it related to possible money laundering by people in Russia and Eastern Europe.”
This Is Working for William Barr
This is how the system works for a man like Barr, who apparently can lie to a group of senators without consequence. (It makes one question his value as a witness.) He will likely report to his office in the morning without fear of censure, much less removal from office. The president — who reportedly loved Barr’s combativeness because this trait ranks highly on Trump’s metrics for loyalty and manliness — will probably tweet to his heart’s delight, painting the senators whose oversight Barr brushed off as traitors while they all ignore the signs of forthcoming foreign election interference.
Scientists Restore Some Function In The Brains Of Dead Pigs
“The Yale University research team is careful to say that none of the brains regained the kind of organized electrical activity associated with consciousness or awareness. Still, the experiment described Wednesday in the journal Nature showed that a surprising amount of cellular function was either preserved or restored. The implications of this study have staggered ethicists, as they contemplate how this research should move forward and how it fits into the current understanding of what separates the living from the dead.”
Parents of Babies Too Young to Vaccinate Feel Trapped by Measles Outbreak
“This is life during a measles outbreak for parents of babies: a maelstrom of fear, isolation, truncated plans and, not infrequently, unfiltered fury. Children typically do not receive their first dose of measles vaccine until after their first birthday. So parents of infants are trapped in a dangerous limbo. They want to protect their children from measles, an extremely contagious virus that killed 110,000 people around the world in 2017, most of them young children. Yet they have little choice but to chance exposing their yet-to-be-vaccinated babies any time they leave home.”
When Patients Get Overwhelmed, Informed Consent Needs Rethinking
Both emotional overwhelm and informational overload are phenomena commonly experienced by patients, and they can present serious challenges to physicians’ doctrine of informed consent. Medical ethicists suggest a categorical rethinking of this doctrine in specific clinical contexts and suggest several ways that physicians can achieve their higher calling—protecting patients—when informed consent is impossible to achieve.
Police Took a Cancer-Stricken Toddler from His Parents. Their Supporters Call it a ‘Medical Kidnapping.’
“Since then, the case has attracted national attention as Bland-Ball and McAdams insist they were trying to find their son alternative medical care, accusing the police and medical officials of stripping them of the right to choose their own treatment plan for their son. Their supporters call the state’s decision to take custody of Noah a ‘medical kidnapping’— a term that’s become common in communities skeptical of traditional medicine when authorities take drastic measures to provide medical care they see as essential to the child’s well-being.”
A Facebook request: Write a code of tech ethics
“Just like legal and medical practitioners, tech companies are knowledge specialists, so it makes sense to obligate them to develop standards of good ethical practice for gathering and using data about you. (They can begin by Googling medical and legal ethics codes!) An ethical code also doesn’t require legislation or regulation to be put into place; the companies could adopt it on their own.”
How To Prevent AI Ethics Councils From Failing
“The ‘technology and monetization first approach’’ to AI needs to evolve to a ‘people and ethics first’ approach. Ethically aligned design is a set of societal and policy guidelines for the development of intelligent and autonomous systems to ensure such systems serve humanity’s values and ethical principles.”
He Wrote About Racial Resentment in the White Working Class. Then White Nationalists Proved His Point.
“Metzl, who directs Vanderbilt’s Center for Medicine, Health, and Society, was at the popular independent bookstore promoting his recently released Dying of Whiteness:How the Politics of Racial Resentment Is Killing America’s Heartland (Basic Books). Writing as a physician and social scientist, Metzl describes how, in his view, policies pitched to lower- and middle-class white people as ways to make their lives “great again” end up cutting their lives short. Resistance to health-care reform, cuts in school budgets and social services, and laxer gun laws are among the policies of the Trump era that put Americans at greater risk of sickness and death, he writes.”
Catholic services in Sri Lanka capital canceled for 2nd week
“Last week, Muslims were told to stay home for Friday prayers and all of Sri Lanka’s Catholic churches were closed. Instead of the usual Sunday Mass, Ranjith delivered a homily before clergy and national leaders at his residence that aired on television. The April 21 bombings at churches and luxury hotels killed 253 people and officials have warned that suspects linked to the bombings are still at large.”
Catholic University sex abuse series wraps with starkly different viewpoints
“Weigel, a biographer of Pope John Paul II and senior fellow at the Ethics and Public Policy Center, a conservative think tank in Washington, D.C., discussed the negative influence of Satan, the sexual revolution and mass media on the current crisis. Carr, the founder and director of the Initiative on Catholic Social Thought and Public Life at Georgetown University and former director of the Department of Justice, Peace, and Human Development at the U.S. bishops’ conference, presented 10 lessons on dealing with clergy abuse he gained from personal experience as both a victim-survivor and in working with the bishops.”
STUDENT VOICES | CHYNN ETHICS PRIZE SECOND-PLACE WINNER
By Michael Bub
Family gatherings for the holidays are one of those things that most everyone has to deal with. Those who get excited for these annual events are few and far between. Most of us just view them as an opportunity to visit with that one aunt, uncle, or cousin whose company you enjoy while avoiding the others who ask the same questions with feigned interest every year. On Easter Sunday of 2017, however, one of those usually pointless conversations bore fruit, presenting an exciting opportunity. After answering the typical “What year are you again?” and “What are you studying”-esque questions from my second cousin’s husband (I won’t even attempt to entitle that familial relationship), he asked me if I had any ideas in the works concerning how to boost my ever-relevant future medical school resumé during the upcoming summer. With little vigor I responded that, ideally, I hoped to work or volunteer in a hospital-type setting or possibly even shadow a doctor to begin filling the long list of requirements necessary to have a fighting chance of getting into a decent medical school. He halted my apathetic train of thought, offering a suggestion that finally changed my outlook of him as simply the born-on-third-base son of a name partner for one of the largest firms in St. Louis. A client of his happened to be a surgeon at one of the leading hospitals in the metropolitan area, specializing in neurosurgery, a particular interest of mine.
I recall the first patient the most vividly. Two months had passed, and I had met Dr. Moore (name changed) that morning before his first scheduled appointment. As I tried to make myself as small as possible sitting in a corner of the room atop a small stool, a thirty-something blonde woman entered the room. Before she could take her seat, Dr. Moore gave her a quick rundown of who I was, why I was there, and asked if she would mind me sitting in on her visit. She paused, noticing me, so I sat up, smiled, and gave a slight wave. Another moment passed before she muttered, “That’s fine”. Fine. This was day one, hour one, and I had already received my first taste of uncomfortability. In the moment, I only felt uneasy as it seemed like the patient was displeased with my presence; not until later did I consider the ethics of my intrusion. I was a first-year college student with virtually zero medical experience, yet I sat there and was somehow allowed to listen as Dr. Moore asked this stranger, whose voice trembled as she replied
from the intense nerve pain she was experiencing in her shoulder, some very personal questions. Yes, she had been informed of my presence before the doctor-patient interaction began, but not prior to her visit. Was she really supposed to tell a seemingly good-intentioned 18-year-old to leave the room because his presence bothered her?
The Belmont Report, a set of general guidelines for research ethics, addresses issues such as these under the principle of Respect for Persons, which can further be broken down into an acknowledgement of a person’s autonomy and the requirement to protect those with diminished autonomy (Belmont Report 4). One might assume all of a doctor’s patients are autonomous persons, but, based on the individual’s specific circumstance, they may not be. Take the mid-thirties woman for example. When healthy, she would likely be considered an autonomous person. However, at the time during which Dr. Moore asked her consent for me to shadow her visit, she was experiencing so much pain that she could hardly speak. The Belmont Report states that “some individuals lose [the capacity for self-determination] wholly or in part because of illness” and that “Respect for … the incapacitated may require protecting them … while they are incapacitated” (Belmont Report 4). This individual had endeavored to make an imperative visit to address chronic, debilitating pain and was instead approached by an esteemed surgeon asking her permission to allow a stranger to sit in on her appointment. While I am certain Dr. Moore wished no ill-will, individuals in vulnerable situations like this woman’s must be protected, and ethical standards such as these elucidated in the Belmont Report must be considered.
Further ethical issues were revealed upon entering the Operating Room. Etiquette within the OR is well-known among those following career paths in the medical field, and even the general populace has certain ideas about the requirements from popular culture. Everyone wears scrubs from head to toe, face masks, and preferably comfortable shoes. What most people do not know, however, is that a stringent ethical code also exists among those who work within the confines of the OR. The code includes ensuring that patients are informed “about staff members who will be a functional part of the surgical team” as well as clearly and concisely “informing patients … about the process of overlapping, sequenced, [or] multidisciplinary surgeries” if applicable (Holt). Prior to my experiences within an operating room, I was not privy to this information. Informed consent is vital when performing surgery on an individual. Unfortunately, “Patients are, in general, woefully lacking in information and understanding about who, specifically, is participating in their surgical procedures, and what role each participant will play” (Holt). I witnessed five or six surgeries throughout my summer shadowing Dr. Moore and only once was I introduced to the patient prior. For the other four or five instances, there was no indication that patients were aware of my attendance of their operations.
The mere presence of a prospective medical student within the operating room with essentially no role to play may seem insignificant to some, but envision yourself as the patient. During the surgeries I observed, the patients’ pre-surgery gowns were usually removed after sedation, leaving each individual completely bare for a short period of time. Would you have no qualms with a random 18-year-old hovering over your unclothed body for seconds at a time as the rest of the OR staff prepared the next steps? For some, and especially for those unaware of this unqualified individual’s presence, this circumstance may be considered an acute invasion of privacy and a violation of the Belmont Report’s principle of Respect for Persons.
For this reason, informed consent is yet again a necessary step in the pre-surgery process. No aspect of an operation in which a human person’s life hangs in the balance should go unattended. A patient should have a complete knowledge of every facet of the procedure, including an awareness of each individual that will be present during the surgery. Unfortunately, patients almost universally sign the surgical informed consent document on the morning of their surgery in the preoperative area, which “usually does not allow for further discussion of concerns and questions that the patient have developed since the last visit” (Holt). The integrity of this process is further jeopardized upon the realization that “the patient has likely not slept well the night before, may have awakened much earlier than usual, is probably hungry and thirsty, and is very nervous about what is to occur” (Holt). Much like the first patient whose visit I shadowed
with Dr. Moore, those undergoing surgery are in no position to consent to matters of such magnitude under these unfavorable conditions. As such, the signing of this document in essence means nothing if the patient’s awareness remains inadequate.
A curious undergraduate student simply seeking to gain some pre-medical experience as well as a few shadowing hours to buff a resumé may seem harmless. Yet, the ethics involved in allowing such an individual to sit in on physician-patient interactions and surgeries unannounced should be considered carefully. The unease I experienced while sitting idly by as an otherwise healthy woman was nearly brought to tears describing the difficulty she endured simply raising her arm to get a box of cereal down from a high shelf that morning was certainly not unfounded, so imagine how she might have felt regarding my presence. By the conclusion of this woman’s visit, Dr. Moore had suggested surgery as a possible option, with the patient convinced it may be the only plausible solution. Patients such as this woman who are strong candidates for surgery along with those involved in the pre-surgery and operational process are at their most vulnerable. Consequently, measures must be taken to provide these individuals with the utmost protection from potential breaches of the ethical standards delineated in the Belmont Report, such as failing to prioritize the thorough and legitimate consent of those with a lessened capacity for self-determination.
The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects in Research.
STUDENT VOICES | CHYNN ETHICS PRIZE FIRST-PLACE WINNER
By August Kublin
In recent decades, there has been a significant increase in biomedical research being conducted in developing countries. Institutes like the Bill and Melinda Gates Foundation, and the US National Institutes of Health have begun funding medical research in numerous countries in Africa and other struggling parts of the world. Research programs have started outsourcing to these areas for multiple reasons, including reduced costs and direct access to affected populations. Conducting research in developing nations can have tremendous benefits for the medical field, and in many cases, it is the best way to develop new treatment techniques, medications, and vaccines. It often makes the most sense to test new drugs or therapies on the target populations that are intended to benefit. Performing medical research in developing countries offers advantages for those conducting the research, but these efforts often fall short of the ethical standards in the US and other areas of the developed world. Research trials in previous years have often violated the ethical rights of at risk populations in developing countries. These violations most often begin with obtaining proper informed consent from the individuals participating in the study. But when researching vulnerable populations, or performing clinical trials in these areas, there are additional ethical concerns that must be taken into consideration. New guidelines and methodologies have enhanced the protection of these groups in recent years, but the ethical violations continue. In order to safeguard the rights of these populations, researchers must fully inform participants about the risks and procedures of the research and receive direct verbal or written consent from them or the responsible party.
Obtaining proper informed consent from a participating individual can be problematic even in the United States, so when different cultures and languages get added to the mix, things can become complicated. When I was growing up in the small country of Malawi in southern Africa, I experienced this stark difference between cultural backgrounds. I spent many days playing with the young children who lived in my neighborhood and walking through the dusty, colorful markets scattered through the hills. I often asked my parents why the other children were allowed to stay out and play later than I was, as I was jealous they could continue to roam after dark. I soon found out that many of the young boys I played soccer with would return to the orphanage late at night, or to a home where the mother was busy tending to three crying babies. These children were forced to fend for themselves on a daily basis with very little guidance as to how to progress through a healthy life. After spending time with these young Malawians, I have come to realize the importance of protecting these people’s natural rights, especially when they have no one to help them. The Belmont Report, written by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, outlines principles and guidelines that best protects the rights of human participants involved in research, young and old. This report breaks down the notion of informed consent into three primary components, information, comprehension and voluntariness (The Belmont Report, blackboard).
Each of these three points brings up issues that researchers have encountered numerous times when designing research trails in developing nations. Each contributes to the autonomy of the individual, something that is recognized as a right by many developed countries and organizations around the world, such as Amnesty International, and the World Health Organization (Krogstad, 2010). But this is something that already brings new issues to the table, as the notion of autonomy is variable throughout different cultures. In the US and other developed countries, the idea of consent is attributed to the individual participant, unless they are minors or legally unable to decide for themselves. But for many communities in developing nations, consent begins with the community, not the individual. This is common in areas of sub-Saharan Africa, South Sea Islanders, and for tribes in the Amazon (Krogstad, 2010). Obtaining informed consent from these people requires a specific knowledge of the customs and practices of those groups. Village leaders or head of households must often be consulted before the individual participant is approached. Because of this, it is easy to accidentally violate the communal rights of these people, thus undermining the ethical basis of the study.
Similarly, obtaining consent from young and impoverished or homeless individuals can be a difficult problem. Children are often a vital component of important research, as preserving the health of new generations can ensure the future prosperity of these vulnerable groups. Normally, obtaining consent to research children begins with the parents or guardians, as they are responsible for the child’s safety. But when dealing with impoverished populations, the question of consent for a child becomes complicated. For example, the Congo has alarmingly high numbers of orphaned children living in the slums of its cities. These children are often diseased, with a high prevalence of HIV and other problematic health conditions, and research on this population is important in order to improve public health throughout the country. But most of these children are orphans living on the streets of the nation’s capital, Kinshasa, without any shelter or legal guardian (Mupenda, 2012). How should one approach the issue of informed consent with this test group? Finding a home, shelter or education for these young people might lead to possible solutions, but those aren’t always viable options. These are the kinds of issues that researchers face when studying disadvantaged groups.
Properly informing research participants about the risks, benefits and other aspects of a study is another area that can result in a violation of an individual’s rights. Language barriers, translation problems, illiteracy, and documentation problems can leave the subject with a flawed understanding of what they are agreeing to (Krogstad, 2010). They might sign their name, or initial a document, but this often doesn’t prove the individual is properly informed and knowledgeable about the purpose and dangers involved with the research. This can lead to problems in gathering data for the study, as someone might not have fully understood what information they might need to provide the researchers, or the extent of certain tests. It can also have ramifications down the line during the evaluation and publication of that data, as some participants might not have known the extent to which their information would be used and seen by other people (de Vries, 2015). While these issues are discussed in The Belmont Report and other documents from ethical review boards, researchers must be much more detailed when informing participants about their involvement, and better equipped to obtain proper consent from individuals wishing to participate in research.
Another common issue with consent that can occur with research in these low-income countries is compensation. Many impoverished individuals volunteer for these studies in order to receive money for their participation. This is a common practice for most research programs in the US and abroad but deciding what the proper reward should be has long been a problem for ethical review boards. Providing too high of a reward for participation will draw in poor individuals with little regard for their own safety. Giving excessive reimbursement can also be seen as coercion, as it may not only encourage individuals to participate in something they wouldn’t normally agree to, but also entice them to lie about their information in order to gain access to the benefits of the study (Fried, 2007). This can both undermine the ethical basis of the study and skew the data as a result of false information. Providing little to no compensation is also harmful as it can either waste people’s time, or disincentivize individuals from joining the study (Krogstad, 2010). Finding an ethical balance is important for maintaining proper informed consent, as going too far in either direction will most likely reduce the individual’s understanding of the parameters of their participation.
Obtaining true informed consent from individuals participating in a research study is vital to the ethical validity of the project. Many cases of unethical research begin with populations that have not been fully informed about the extent of their participation, or with individuals who have not given their full, voluntary consent to be a part of a research study. People in developing or impoverished countries are at the greatest risk for these ethical violations, something I have observed in my own experiences growing up in Malawi. It is important that we continue to scrutinize researchers throughout their experimentation to ensure that abuses to informed consent do not occur, especially in at risk populations.
de Vries, Jantina et al. “Addressing ethical issues in H3Africa research – the views of research ethics committee members” HUGO Journal vol. 9,1 (2015): 1.
Fried, Adam L., and Celia B. Fisher. “The Ethics of Informed Consent for Research in Clinical and Abnormal Psychology.” The SAGE Encyclopedia of Abnormal and Clinical Psychology, 10 Mar. 2007.
Krogstad, Donald J et al. “Informed consent in international research: the rationale for different approaches” American journal of tropical medicine and hygiene vol. 83,4 (2010): 743-7.
Mupenda, Bavon. “UNC Fogarty Bioethics Research Capacity Building Project.” UNC Health Care, 18 Jan. 2012, news.unchealthcare.org/som-vital-signs/2012/jan19/mupenda.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. [Bethesda, Md.]: The Commission, 1978.
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Originally named ‘medicine babies,’ savior babies have been a more recent discovery in the medical world, presenting families with a quick fix to dealing with terminally ill children. In 2015, the Journal of Medical Ethics wrote a piece on ‘Savior Siblings’ and the ethical implications that arise when considered as a potential solution to difficult situations, showing the rising popularity of the subject. This article will provide a brief background on the history of savior siblings within the United States and how it has been portrayed in the media. I will explore law, or lack thereof, surrounding savior siblings and how this can affect future complications when it comes to the procedures that create savior siblings. I will analyze the moral foundation of Bioethics to help comprehend the complexity of the issue of savior siblings. Further, I will rationalize the ethical dimensions and questions that could stem from the morality of savior siblings and the possibility of potential abuse. And finally, using the foundation and dimensions that Bioethics has to offer, I will propose policy recommendations that could benefit the future use of savior siblings, especially as technology advances.
Adam Nash was born in 2000 in the United States as the first ‘savior sibling.’ His sister, Molly, was born with a specific type of anemia; doctors explained to her parent’s the best way to cure her was to have a savior sibling. As soon as Adam was born, his umbilical cord was used as a bone marrow transplant for his sister. A savior sibling can be defined as a baby born in order to help save their sibling by the use of compatible parts. Because children with the same parents have a one and four chance of sharing the same Human Leukocyte Antigen (HLA) genes, sometimes the only means to save a child from a terminal disease is through a savior sibling. However, there is no guarantee of success if parents elect to move forward with this option. Three-fourths of a chance still remain in which the HLA genes of the savior child will not match their older sibling. What set Adam Nash’s case apart from others, was that Adam was also a “designer baby”. His parents conceived him through preimplantation genetic diagnosis and in vitro fertilization. This type of procedure involves the collection of sperm and eggs in a petri dish, followed by genetic testing of the HLA genes. When a match is identified between the HLA genes of an embryo and that of the terminal older child, that embryo is implanted in the mother. While Adam Nash only donated his umbilical cord to his sister following birth (that being the extent of his donation to save his sister’s life), it is important to look beyond this instance and consider what savior siblings could be used for in alternative situations.
My Sister’s Keeper is a 2004 book written by Jodi Picoult and then later, in 2009, turned into a film. The story follows a young girl named Anna suing her parents for medical emancipation. She is a savior sibling for her sister Kate who is terminally ill and has begun to experience renal failure. Such a diagnosis would require her younger sibling to give her one of her kidneys. When Anna realizes having only one kidney translates to a predetermined future for herself, she tells her parents that she does not want to give Kate her kidney, ultimately tearing the family apart. While this novel is fiction, Jodi Picoult has talked about the ways in which she came to research this topic of savior siblings and how it relates to her own life. At the age of 5, Picoult’s son was diagnosed with cholesteatoma which resulted in numerous surgeries due to the tumors in his ears. Picoult has expressed that during those difficult times, there was no question that she would do anything for her son and that her family, including her other children, understood they came second to his well-being. The novel raises important questions when considering savior siblings such as what type of measures can a family take against one child in order to help save the life of another? At what point are you infringing upon the rights and autonomy of the savior sibling? And are savior siblings, at all, ethical?
In law, there is little being said about savior siblings. As of right now, there are no federal regulations, or guidelines concerning savior siblings which has provided the scientific field with an unsupervised platform to do as they see fit. The closest thing the United States government has to being involved in this specific field is the 1992 Fertility Clinic Success Rate and Certification Act (FCSRCA). This statute required Assisted Reproductive Technology Clinics to report their data to the federal government. It also required the Center for Disease Control to develop a model for these clinics to follow in order to obtain certification for embryo laboratories. While this is the only type of regulation placed on Assisted Reproductive Technologies, there is nothing specific in this statute about savior siblings. Written in 1992, this statute is outdated and does not accurately represent the scientific field today. This lack of regulation could gravely affect the future of savior children and how they are treated. If corruption is occurring, there is no system in place monitoring and appropriately taking action against such said ethical dilemma.
When there is a lack of law, there is theory to be applied. Observing savior siblings in an ethical framework, specifically Bioethics, could help others better understand what is at stake and what the moral implications are. Further, it could help demonstrate what to do next in a growing technological climate. There are four basic principles to Bioethics: (1) respect for autonomy, (2) beneficence, (3) non-maleficence, and (4) justice. Each of these principles has equal importance and complexity when dealing with ethical decision making. Respect for autonomy most literally means the ability to respect a person’s agency and liberty when it comes to actions without any type of coercion involved. Situations where medical help is essential, it becomes complicated when considering consent and the capacity of the patient. Beneficence is the active duty to benefit the patient. It is the minimization of pain and suffering with the best interest of the patient in mind. Non-maleficence is best defined as do no harm. This weighs heavily with the decisions of caretakers when deciding things such as: (1) withholding or withdrawing life-sustaining treatment, (2) extraordinary and ordinary treatment, (3) sustenance technologies and medical treatments, (4) intended effects and merely foreseen effects, and (5) killing and letting die. Lastly, justice is the equitable treatment of everyone. It is the ability to acknowledge vulnerable or disadvantaged groups and ensuring the decisions that are made are most equitable to everyone. With these four principles, not one more important than the next, people in the medical field are able to guide themselves through a difficult ethical process.
Bioethics in relation to savior siblings is fundamental in explicating the dynamics of the physician, the child, and the parents. When it comes to autonomy, it is important to consider whose autonomy is being represented over the other. The autonomy of the parents seems to supersede that of the savior child (even after the child is born). What happens when children are not able to make decisions for themselves? When their autonomy is not seen legally? The savior siblings self-rule is threatened even before they are born. There is a prioritization of autonomy here- one child over the other. Nonmaleficence is also influential because at what point does this principle terminate? If a doctor promises to do no harm, who is he promising- the child or the parents and to what extent? The good the savior sibling will do for the sick child must be weighed to the suffering it will cause the savior sibling. How sick is the child and if he or she gets treatment from a savior sibling, will it benefit in the end? If the treatment does not work,
was it all for nothing? How can these risks and benefits to two different people be compared? These are just some of the questions that are brought to light when analyzing savior siblings in a Bioethics framework.
There are many ethical dimensions and questions that arise when investigating savior siblings. A fiduciary duty is a legal responsibility between at least two parties (a doctor and a patient). It is a relationship acknowledged to have unequal power and, therefore, needs special attention. Because of the skill and knowledge the doctor has over the patient, the patient’s interests must be involved when a physician provides medical advice. The physician must work to ensure the information and suggestions he gives are what’s best for the patient. When it comes to the procedure of in vitro fertilization and genetic modification to create a savior sibling, the physician must consider all lives involved. It cannot be just the interest of the parents recognized, but the interests of the sick child, the savior sibling, as well as the embryos used and disposed of that are also just as paramount. Does the sick child have the desire to live and deal with their illness? Does the savior sibling want to be created for the purpose of another life? And lastly, is it ethical to dispose of embryos not used? Part of this practice involves taking multiple eggs and sperm and fertilizing them. When the doctor finds the embryo with the genetic match to the sick child, all other embryos are discarded. Depending on what one may consider as life, this could be a heinous act committed. If a doctor wants to keep his fiduciary duty, he must consider all these aspects.
Now that it has been established that there are multiple ethical conundrums when dealing with savior siblings, I will consider some policy and practice recommendations. The United Kingdom is a perfect place to look. Because the government of the United Kingdom has consistently been concerned and involved with the medical field, there is more regulation and organization behind some of these technologies. In the United Kingdom, it is required that a clinic is licensed in order to perform the savior sibling procedure. In 1990, they established a Human Fertilization and Embryology Act which allows for testing and tissue matching for savior siblings but under very strict criteria. It wasn’t until 2006 that the act was updated to include the permission of savior siblings “to enable the identification of a tissue match for an older sibling suffering from a life-threatening illness, where umbilical cord blood is to be used in treatment.” In 2009, the Act was amended to detail that no whole organs can be donated from the child. With such guidelines and regulations, there is room for studying savior siblings without complete freedom for the physician to do as they please. There is also a clear value of life for the savior sibling when the act denies right to organ donation. The United States can learn from the United Kingdom and while this does not solve all the problems of whether such procedures are humane or not, it limits the wrong that can be done and instructs the future.
Naturally, there is no concrete answer to the ethical dilemma behind savior siblings. As this technology advances so do the implications. For humans, it seems impossible to determine whether altering life is truly the right thing to do. Is intervention of deadly diseases always permissible? What happens when another life becomes involved in the solution? Just because there may never be a perfect answer to the morality of savior siblings, there should be codes to follow for the best possible outcomes. Analyzing other countries’ laws could benefit the United States in determining how something such as savior siblings should be managed. Medical technology is imminent and regulation is imperative for a virtuous future for savior siblings.