12 Chapter 12: Four Principles of Bioethics

In this chapter, we’ll be diving into the fascinating and multifaceted world of bioethics. As we progress into an era marked by rapid scientific advancements and new medical technologies, ethical questions regarding health, biology, and life itself are growing more complex. These questions touch all aspects of life, from the beginning to the end, and even beyond. Understanding the ethical dimensions of these issues is critical to navigate this ever-evolving landscape.

We begin our exploration with a story, “The Undying Oath: Bioethics in the Night.” This narrative features Esther, a doctor who is also a vampire—a twist that allows us to explore the clash of ethical issues in healthcare, personal beliefs, and societal expectations. Through Esther’s experiences and dilemmas, the story will expose you to various bioethical challenges, serving as a foundation for the subsequent discussion.

In the next section, we delve into the big ideas in bioethics, beginning with the Four Principles Approach, which includes respect for autonomy, beneficence, non-maleficence, and justice. We will then explore cutting-edge topics in bioethics such as genetic engineering and CRISPR, and confront challenging questions about their ethical implications.

Following this, we address the controversial topic of euthanasia, discussing various perspectives on its ethical implications. We then explore research ethics, touching on key issues like informed consent, exploitation, and the use of human subjects in research. We also delve into the increasingly relevant topic of AI in healthcare, probing ethical questions about privacy, decision-making, and the role of AI in clinical settings. Next, we tackle the contentious topic of abortion, exploring various ethical perspectives on the rights and interests involved.

Lastly, we turn our attention to public health ethics, exploring the ethical dimensions of disease prevention, health promotion, and the allocation of resources. These discussions are intended to spark thought and dialogue about the complex and often conflicting ethical considerations that arise in public health practice.

By the end of this chapter, you will have a solid understanding of the key ethical issues in biomedicine and public health, preparing you to think critically about these topics and to engage in informed discussions about the ethical dimensions of health and healthcare in today’s world.

Story: The Undying Oath: Bioethics in the Night

I.

Esther’s clinic was situated in the heart of the city, amidst a community that mirrored the colorful quilt of the old world – Jews, Roma, and a variety of Christian and Islamic sects making up the threadwork of its resilient fabric. She was a Jewish doctor, upholding the traditions and teachings of her faith amidst a city that seemed to have forgotten the essence of humanity.

She treated patients from all walks of life, tending to their physical ailments and often lending an empathetic ear to their sorrows and fears. Her calm demeanor and compassionate approach endeared her to many. To the young Anabaptist mother, Hannah, with her newborn baby girl, she offered a warm smile along with her medical advice. To Ibrahim, the old Roma patriarch, who was battling arthritis and the weight of countless years, she was a comfort, her presence soothing the ache that medications could not. The clinic was more than a place of healing; it was a haven of acceptance and warmth in a city steeped in dread and discrimination.

Then there was the other part of her existence. Esther was also a vampire, an unnatural state of her birth, but the unfortunate result of a blood-borne infection she’d gotten while treating a patient. It was a paradoxical existence, her compassionate nature constantly at odds with the inherent predatory instincts of her vampiric state. As a vampire, she was viewed as an ally by the ruling class, the powers of the city that bore an uncanny resemblance to the oppressors of Jewish history. The laws of the vampire overlord, Abaddon, echoed the discriminatory laws of the 17th century. Restrictions on movements, curfews, and even dress codes that made the human populace easily identifiable were not dissimilar to the demeaning Jewish badges of that dark era.

However, for all its unnatural attributes, Esther’s vampiric existence did not rob her of her faith or her commitment to the principles of bioethics she had sworn to follow as a doctor. In fact, her unorthodox state of being forced her to seek solutions that would respect both her Jewish beliefs and her ethical commitment as a doctor. Esther needed blood to survive, an unavoidable fact of her vampiric state. But the thought of preying upon others, violating their autonomy, and causing harm was abhorrent to her. She couldn’t, wouldn’t, become a creature of the night that victimized the very people she had pledged to heal. And so, she found an alternative way to sustain herself.

Using her medical knowledge, she devised a method to extract plasma from donated blood, the part that she could safely consume without causing harm. The blood she used came from the local hospital’s supply, leftovers from the transfusions and surgeries, which otherwise would have been discarded. In doing so, she adhered to the principle of non-maleficence, ensuring her survival did not come at the expense of another’s health.

Esther was also deeply conscious of autonomy, the right of individuals to make informed decisions about their own bodies. She was careful to make sure that the donated blood was freely given, not coerced or forcibly extracted. Her vampiric nature would not be an excuse to trample upon another’s right to choose.

The principles of beneficence and justice guided her actions as well. She used her medical skills not only to treat her patients but also to mitigate the effects of her vampiric existence. Her respect for life and dedication to justice meant she would not exploit the vulnerable or marginalized for her needs. Instead, she strived to act in ways that would benefit others and uphold the equitable ideals she held dear.

Esther’s faith, too, provided a moral compass in this uncharted territory. The Jewish teachings of Tikkun Olam, repairing the world, and Pikuach Nefesh, saving a life, became guiding tenets as she navigated her dual existence. She saw her vampirism not as a curse but as a challenge to live her faith more fully, to uphold the sanctity of life and respect for individuals even in the most trying circumstances.

Esther’s life revolved around her clinic, an island of tranquility amidst the city’s rising tide of despair. It was here that she found herself reflecting on the four principles of bioethics she held dear: autonomy, beneficence, non-maleficence, and justice. In each patient she treated, she saw these principles defied by the vampire lord’s oppressive rule.

There were whispers in hushed tones about the experimental procedures being performed on humans in Abaddon’s lair, a monstrous fortress that loomed over the city. Unwilling human subjects were allegedly taken to endure unthinkable processes, their bodies serving as a playground for Abaddon’s vile experiments. It reminded Esther of stories from history, of unspeakable atrocities committed in the name of pseudoscience. Each rumor struck a blow against the principle of beneficence, the ethical commitment to act in the best interest of the patient.

Then there was the ominous ‘Blood Tax’, a monthly tribute required from every human, where blood was extracted and offered to the vampire elite. This harrowing procedure, performed with little regard for the health of the individual, flagrantly violated the principle of non-maleficence, the commitment to ‘do no harm’. The signs of this tax were often visible in her patients – frail bodies, pale complexions, and a deep-seated dread that no medicine could alleviate.

The principle of autonomy, the right for individuals to have control over their own bodies and decisions, was being trampled upon, too. Abaddon’s guards roamed the streets, enforcing his decrees with a brutal hand. Any refusal to comply with the Blood Tax, or participation in the experiments, was met with brutal punishment. The autonomy Esther had always strived to respect in her practice was being systematically eroded by the vampire lord’s rule.

Finally, there was no semblance of justice under Abaddon’s rule. The minorities, already on society’s fringes, suffered the most. The Roma and Jewish citizens were often the first to be chosen for the experiments or forced to pay heavier Blood Taxes. It was a perverse inversion of justice, the principle she believed should be fundamental to society.

Each day, as Esther treated her patients and bore witness to their suffering, she felt a growing disquiet. Her profession’s principles stood in stark contrast to the reality of her world. Each ethical violation committed by Abaddon’s regime felt like a personal affront, further deepening the fissure between her faith, her professional duty, and her involuntary vampiric existence. It was a dissonance that started to grow into an urgent question: How long could she merely treat the symptoms of the city’s disease, without addressing the root cause?

Navigating the complex crossroads of bioethics was a daily struggle for Esther. Two cases in particular were imbued with echoes of classic moral dilemmas, yet they bore unique stamps of the city’s oppressive vampiric rule and the patients’ personal predicaments.

The first case concerned Yitzhak, an old man who had lived through the oppressive regime’s rise to power. Time and illness had withered Yitzhak’s body, leaving him barely clinging to life. Yitzhak had once been a vampire like Esther but had rejected the necessary intake of blood, leading to a prolonged, painful deterioration. His family pleaded with Esther to convince him to drink, but Yitzhak held steadfast, seeing his refusal as an act of defiance against the regime that had forced vampirism upon him. It was an unusual case of passive euthanasia, bound up with Yitzhak’s autonomy and desire to die on his own terms. For Esther, it was an ethical minefield. Beneficence and non-maleficence were blurred lines here, teetering between aiding in prolonging a life of suffering and respecting Yitzhak’s wish to die as a form of resistance.

In the second case, Esther was presented with Sarah, a woman in the early stages of pregnancy. Sarah had been forcibly bitten by one of the regime’s soldiers, a cruel act of domination that was becoming all too common. The bite meant that Sarah was now beginning a horrific transformation into a vampire herself, a fate that also awaited her unborn child. Fearful for her unborn child’s future and unwilling to raise a child in a world ruled by tyranny, she asked Esther to terminate the pregnancy.

This situation brought to mind the debates around abortion, layered with the complexities of their vampiric world. Sarah’s autonomy meant she had the right to decide about her body and her unborn child. But the principles of beneficence and non-maleficence were murkier to navigate. Could termination be seen as an act of beneficence, saving the unborn child from a life of potential suffering? Or would it be considered harm, an interruption of an unborn life? Esther’s vampirism added another layer of complexity as she grappled with the ethical implications of her potential actions.

These cases drew Esther into a deep contemplation of her principles. As she balanced the scales of bioethics against the backdrop of tyranny and vampirism, she grew increasingly aware of the systemic injustice that her patients faced. It was a stark reminder of the pressing need for change and the crucial role she could play in bringing it about.

II.

In the shadows of the night, under the hushed whispers of rebellion, a new type of patient began to frequent Esther’s clinic. They were members of the Reclaimers, an insurgent group that had taken it upon themselves to challenge the tyrannical regime. Treating these rebels was a dangerous act; discovery would undoubtedly lead to severe consequences. Yet, Esther found herself drawn to their cause, their fight echoing her own internal struggle against the inherent injustice she encountered every day.

As she cleaned wounds and treated fractures under the veil of darkness, Esther’s mind often turned to the virtues that underpin the practice of medicine. She contemplated the principles of patience, diligence, empathy, and the importance of putting the patients’ well-being above all else. These were the principles she believed made a good physician, the virtues she sought to cultivate within herself.

Late into the night, with the echo of the Reclaimers’ whispered thanks in her ears, Esther would reflect upon the Hippocratic Oath she had internalized. ‘First, do no harm,’ the oath dictated, an instruction that became increasingly challenging to interpret in the face of a system that seemed to perpetuate harm at every turn. She questioned how to uphold the integrity of her profession while living within a society that seemed hell-bent on undermining it.

Esther found solace and inspiration in the tales of Florence Nightingale, a contemporary figure whose name had traversed across oceans and found its way into the oppressed city. Nightingale, like Esther, had chosen to devote her life to healing, serving as a beacon of hope and compassion amidst the horror of war. Nightingale’s commitment to improving sanitary conditions and her emphasis on preventive care resonated deeply with Esther, reminding her of the fundamental goal of medicine – to ease suffering, promote health, and preserve life.

As Esther treated the Reclaimers, she became increasingly aware of her role within the broader struggle for justice. The Hippocratic Oath, the principles of bioethics, the virtues of care, and the example set by figures like Nightingale all coalesced into a guiding force. They offered her a moral compass, a beacon of light in a world darkened by tyranny and exploitation. They served as a reminder of her commitment, not just to her patients, but also to a future where justice and empathy could thrive. The nights became a testament to her resilience and a promise of the resistance that was slowly beginning to stir within her.

One night, several leaders of the Reclaimers approached Esther. In the dim light of her clinic, they presented her with a request that carried profound ethical implications. They asked her to turn them into vampires, to give them the strength, speed, and immortality inherent to her kind, which they believed would enable them to overthrow the oppressive regime. They couched their request within the framework of utilitarianism, arguing for the greater good that such an act could accomplish.

Mikael, the eldest among them, reasoned that vampirism could increase their lifespans, allowing them to continue their fight indefinitely and pass on their knowledge to new generations of Reclaimers. He reminded her of the young warriors who had lost their lives too soon, like Daniel, a brilliant strategist who had fallen in a skirmish, his promising future snuffed out prematurely. As a vampire, Daniel could have continued his contributions to their cause, his brilliance not lost but preserved.

Rahel, a fierce fighter and respected leader, argued that the enhanced strength and speed of vampires could turn the tide of battles in their favor. She painted vivid images of confrontations where Reclaimers were overpowered by vampire soldiers, like the ambush at the city’s outskirts where they were outnumbered and outmatched, resulting in unnecessary casualties. If they, too, were vampires, they could stand their ground more effectively, reducing the loss of lives.

Finally, David, a compassionate mediator, suggested that becoming vampires could help bridge the gap between the oppressed humans and the ruling vampires, helping to break down barriers and build understanding. He recounted instances where they had been unable to gain the trust of vampire sympathizers because of their human status. As vampires, they could better empathize with the vampire populace, drawing them towards their cause.

Their arguments were compelling, wrapped in a utilitarian logic that suggested a greater good could be achieved. But Esther felt a disquieting churn of emotions. Their request brought her face-to-face with the core of her own ethical dilemma: the reconciliation of her vampiric nature with her principles of bioethics. She was being asked to willingly convert humans into vampires, an act she had never before contemplated. She found herself teetering on the brink of a profound decision, one that could either reshape the city’s future or mire her deeper into moral quandary.

Esther spent a sleepless night evaluating the rebels’ request. Their arguments echoed through her thoughts, underlining the weight of the decision she had to make. As dawn broke, she had reached a resolution. She wouldn’t transform them, a decision rooted in both the principle of paternalism and the broader social consequences.

When she met the rebel leaders in her clinic, Esther began by acknowledging the autonomy behind their request. However, she expressed doubt about whether they fully understood the long-term implications of vampirism. “Vampirism isn’t simply about gaining strength and speed,” she said. “It’s a complete transformation – physically, emotionally, and spiritually. The eternal thirst, the inability to walk in sunlight, the isolation from society – these are burdens I carry every day.”

Esther clarified that her concern was not simply about the individual’s suffering. It was about the potential for harm they could inflict on others and the societal imbalance their transformation could create. As a vampire, the constant thirst for blood could make it difficult to adhere to non-maleficence – the commitment to doing no harm. “The thirst is potent, relentless,” she warned them. “Even with the best of intentions, the risk of harming innocents is very real.”

Furthermore, she expressed her concern about the potential inequality within the rebellion and the society at large. “If only some of you become vampires, it will create a divide within our ranks. It will lead to a new kind of social stratification based on power and immortality. It will infringe upon the principle of justice – the equal distribution of benefits and burdens.”

In essence, Esther’s decision was grounded in a form of justified paternalism. She was acting in what she believed to be their best interests, based on her personal experiences and professional judgement. She did not believe they fully grasped the magnitude of the transformation, and she held reservations about the potential ripple effects it could have on their society.

But it wasn’t just paternalism guiding her; it was also a forward-thinking concern for their community. Transforming them could undermine their cause, leading to more harm and inequality in the long run. It was a complex and fraught decision, but she hoped they would come to see the wisdom behind it. “There are other ways to resist,” she concluded. “Ways that do not require us to forsake our humanity.”

Her words hung in the air as she finished, her decision laid bare before the rebel leaders. Their expressions mirrored their struggle to accept her stance, but Esther stood her ground, hoping they would understand her choice to uphold the principles she held dear.

III

Over time, the rebel leaders came to terms with Esther’s refusal to turn them into vampires. The division and potential harm that she had outlined slowly sunk in, and they reluctantly acknowledged the wisdom in her decision. Her clinic continued to be a haven, treating their wounds and offering a sense of hope amid the turmoil.

However, the peace was short-lived. Several months later, Esther’s quiet acts of rebellion – treating wounded insurgents, providing a sanctuary for the oppressed – drew the attention of the regime. Her clinic, once a beacon of hope, became a subject of scrutiny.

Despite their best efforts to remain discreet, one of Esther’s patients was captured by the regime and under duress, disclosed her clandestine aid to the rebels. In an instant, her world came crashing down around her. The regime’s soldiers stormed her clinic, seizing Esther and arresting her for treason.

In the cold, dark confines of her prison cell, Esther was subjected to relentless interrogations. The regime demanded the names and medical conditions of her patients, especially those suspected of rebel affiliations. Yet, Esther held steadfast to her principles. She refused to breach the trust her patients had placed in her, to violate the sanctity of patient-doctor confidentiality.

She was denied sustenance, her vampiric nature slowly withering away in the absence of blood. But Esther held onto her humanity, her dignity. She would not become the monster the regime expected her to be, she would not compromise her ethics, her principles.

As her body grew weaker, her spirit remained unbroken. Esther died in her prison cell, a victim of starvation and the regime’s tyranny. Yet, her legacy lived on. In the aftermath of her death, her story spread across the city and beyond. Medical textbooks began to chronicle her commitment to patient care, her unwavering adherence to bioethical principles, and her sacrifice in the face of tyranny. Esther, the doctor and vampire, became a symbol of resistance and ethical responsibility, inspiring generations of medical practitioners in the years that followed.

Discussion Questions

• Autonomy and Paternalism: Consider Esther’s decision to refuse the rebel leaders’ request to be turned into vampires. Discuss whether her actions can be justified under the principle of autonomy. Did Esther’s paternalistic approach infringe on the rebels’ autonomy or was it a necessary form of ‘justified paternalism’?
• Non-maleficence and Beneficence: How did the principles of non-maleficence and beneficence factor into Esther’s decision to refuse the rebels’ request? Discuss the potential harms and benefits she considered.
• Justice: Evaluate how Esther’s decision considered the principle of justice. Did the potential for social stratification and inequality influence her decision appropriately?
• Confidentiality: Discuss Esther’s commitment to patient confidentiality, even at the cost of her life. Was she right to uphold this principle, considering the broader socio-political context?
• Role of the Physician: What virtues did Esther exhibit as a physician? How do these align with historical examples, like Florence Nightingale and the Hippocratic Oath?
• Ethics of Vampirism: Given the nature of vampirism and the associated predatory instincts, can a vampire truly abide by the principles of bioethics? Discuss the moral dilemmas presented in this story and the ethical implications for Esther as a vampire doctor.
• Resistance and Ethics: How do you think bioethical principles can guide resistance movements in the face of oppressive regimes? Reflect on the decisions made by Esther and the implications of her actions for the rebellion.
• Ethical Dilemmas: Explore the ethical dilemmas Esther encountered in her work, specifically regarding the cases of euthanasia and the ‘violinist’ situation. How did she navigate these complex situations using the four principles of bioethics?
• Consequences of Ethical Decisions: Discuss the outcomes of Esther’s ethical decisions. How did they affect her personal life, her professional life, and the larger community?
• Legacy: Consider Esther’s legacy as portrayed in the story. How do her actions and decisions serve to educate and inspire future generations of medical practitioners? How does her story contribute to the broader discourse on medical ethics?

Reading: Hippocratic Oath (Modern Version)

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.

I will not be ashamed to say “I know not”, nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life and save life wherever possible within reason; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter.

Big Ideas: Bioethics

Bioethics is the study of the ethical and moral implications of new biological discoveries and biomedical advances, as in the fields of genetic engineering and drug research. Bioethics is a multidisciplinary field that combines elements of philosophy, theology, history, and law with medicine, nursing, health policy, and the biomedical sciences. It addresses the moral, ethical, and societal issues that arise in health care, medical technology, and the biological sciences. The term “bioethics” was coined in the 1960s and has since been used to refer to the ethical implications of developments in healthcare, life sciences, and biotechnology.

Bioethics spans many issues, from those arising in the beginning of life to the end of life, and everything in between. It includes questions about professional ethics, the relationship between healthcare professionals and patients, the rights of patients, the source of knowledge in medical and scientific research, and the potential consequences of new technologies. Here are a few examples that illustrate different areas of bioethics:

• Genetic Engineering: With advancements in genetics, it’s now possible to manipulate the genes of living organisms, including humans. This raises questions such as: Is it ethical to genetically modify embryos to prevent disease? What about for non-medical reasons, like selecting for certain physical traits?
• End-of-Life Decisions: Bioethics also addresses issues related to end-of-life care. For example, when should life-sustaining treatment be withheld or withdrawn? What constitutes a “good death”? Who has the right to make these decisions?
• Research Ethics: Bioethics plays a big role in shaping the ethics of research involving human participants. For instance, it guides how to secure informed consent, how to balance potential harms and benefits of the research, and how to ensure privacy and confidentiality.
• Artificial Intelligence and Medicine: The advent of AI in healthcare also brings ethical challenges. For instance, how do we ensure the fair use of AI in patient care? What happens if an AI makes a mistake?
• Abortion: Debates over the morality and legality of abortion are emotional and long-standing. However, healthcare providers must figure out how to work in society where patients, coworkers and others disagree about this issue. They must also figure out how to balance matters of personal “conscience” versus their professional duties.
• Public Health Ethics: Issues like the distribution of scarce resources (like vaccines during a pandemic), the balance between individual rights and collective health, and the responsibilities of governments to protect public health are all part of bioethics.

In all of these examples, the principles of bioethics, such as autonomy (respecting the decision-making capacities of autonomous persons), beneficence (doing good), non-maleficence (avoiding harm), and justice (fair distribution of benefits, risks, and costs), guide the discussions and decisions. These principles serve as a basis for both professional codes of ethics and practical decision-making in healthcare settings.

The Four Principles Approach to Bioethics

the Four Principles Approach to bioethics was popularized by Tom Beauchamp and James Childress in their book “Principles of Biomedical Ethics.” The four principles are often used as a framework for analyzing ethical issues in health care and are universally applicable across different cultures and traditions. They include:

• Autonomy: Autonomy is the principle that individuals have the right to make informed decisions about their own health care. It emphasizes respect for the decision-making capacities of autonomous persons and their right to self-determination. It’s why informed consent is necessary – patients need to know the risks, benefits, and alternatives before they can make an informed decision about their treatment.
• Beneficence: Beneficence refers to the obligation to act in the best interests of the patient or to promote the well-being of others. This could involve providing effective treatments, preventing harm, or promoting the patient’s health. It requires health care professionals to consider their actions and choose those that will result in the most benefit for the patient. It is closely tied to utilitarianism and ideas of cost-benefit analysis (basically, we want to use the limited resources we have to do the “most good” we can).
• Non-Maleficence: Non-maleficence means “do no harm.” Healthcare professionals must strive not to harm their patients, either intentionally or unintentionally. It is closely related to beneficence, but while beneficence asks healthcare providers to actively contribute to the patient’s health, non-maleficence asks them to avoid causing harm. For example, if a proposed treatment could potentially cause significant harm that outweighs the potential benefits, the principle of non-maleficence would dictate that the treatment should not be provided.
• Justice: Justice in healthcare often refers to fairness in the distribution of healthcare resources. It concerns the equitable distribution of benefits, risks, and costs. In a healthcare context, it could involve considerations of who should receive treatment when resources are scarce, or how to ensure access to healthcare for all segments of the population, regardless of their socio-economic status.

It is worth noting that these principles often need to be balanced against each other, as they can sometimes conflict. For instance, respecting a patient’s autonomy might conflict with a doctor’s notion of beneficence. For example, a patient might refuse a life-saving treatment due to personal beliefs, leading to a conflict between the patient’s autonomy and the healthcare professional’s desire to do what’s best for the patient’s health. In such cases, it becomes necessary to negotiate and balance these principles to resolve the ethical dilemma.

In the following sections, we’ll consider how these four principles apply to current debates within bioethics.

Genetic Engineering and CRISPR

Genetic engineering is a set of technologies used to change the genetic makeup of cells, including the transfer of genes within and across species boundaries to produce improved or novel organisms. CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) is a more recent and revolutionary tool in genetic engineering that has made the process quicker, cheaper, and more accurate. The CRISPR-Cas9 system, the most commonly used, works like a pair of molecular scissors, allowing scientists to cut the DNA at precise locations. This cut can disable a problematic gene, or it can create a spot to insert new genetic material. The medical applications for genetic engineering and CRISPR are vast:

• Gene Therapy: Genetic engineering can be used for gene therapy, which involves inserting, altering, or removing genes within an individual’s cells to treat or prevent disease. A few gene therapies have already been approved for use in humans, such as Luxturna, which treats a rare form of inherited vision loss, and Zolgensma, for spinal muscular atrophy.
• Disease Research: CRISPR can be used to create models of human diseases in animals, leading to a better understanding of these diseases and how to treat them.
• Drug Development: Genetic engineering can help create more effective and personalized medications.
• Cancer Treatment: CRISPR can be used to modify immune cells to fight cancer more effectively, a treatment known as CAR-T cell therapy.
• Preventing Genetic Diseases: In the future, CRISPR might be used to edit embryos to prevent inherited genetic diseases. However, this is ethically controversial and currently highly regulated.

However, these tools also raise several ethics issues. Let’s use the four principles to explore these.

• Autonomy: In the context of genetic engineering, autonomy raises questions such as: Who has the right to decide if a genome should be edited? If parents opt for gene editing to prevent their child from developing a genetic disease, what happens if the child, when grown up, disagrees with the decision? The principle of autonomy also suggests that individuals should be fully informed about potential risks and benefits before making a decision about genetic interventions. However, the science behind genetic engineering and gene-editing tools like CRISPR is complex, and ensuring truly informed consent is challenging.
• Beneficence: Genetic engineering and CRISPR have the potential to prevent or cure diseases, aligning with the principle of beneficence. For example, scientists could potentially edit out genetic mutations that cause conditions like cystic fibrosis or Huntington’s disease. However, determining what is “beneficial” can be tricky. Is it beneficial to modify genes for non-medical enhancements, such as to increase intelligence or athletic ability?
• Non-Maleficence: While gene editing has tremendous potential benefits, it also carries risks. Unintended off-target effects could occur, where other parts of the genome are inadvertently modified, potentially causing harm. There’s also concern about “germline” editing, where changes are made to sperm, eggs, or embryos. These changes would be passed on to future generations, with potential unforeseen consequences. Balancing beneficence and non-maleficence involves careful evaluation of the potential benefits against the potential risks.
• Justice. If CRISPR and other gene-editing technologies become standard medical procedures, who will have access? Will these technologies only be available to those who can afford them, thereby increasing existing health and social inequalities? And considering justice on a global scale, how do we ensure that guidelines and regulations about the use of genetic engineering are fair across different countries and cultures?

Balancing these principles against each other is a complex task. For example, the principle of beneficence might support the use of gene editing to prevent disease, but the principle of non-maleficence might argue against it due to the risk of off-target effects or unknown long-term consequences. The principle of autonomy suggests that individuals should have the right to decide whether to use gene-editing technologies, but this must be balanced against the principle of justice, which might argue for restrictions to prevent misuse and ensure fair access.

An example of a situation where these principles might conflict is the case of editing embryos to prevent a heritable disease. From an autonomy perspective, prospective parents might have the right to make this decision. However, there are concerns of non-maleficence if the editing inadvertently causes harm, and issues of justice arise if only those who can afford the procedure have access to it.

Engaging in public discussion and carefully crafted policy-making is essential in navigating these complex ethical landscapes. This would involve not just scientists, ethicists, and policymakers, but also the public, including individuals who might be affected by these technologies, to ensure that all perspectives are considered in the decision-making process.

Questions

• How should society balance the potential benefits of genetic engineering (such as preventing disease) with potential risks (such as off-target effects or unintended consequences)?
• Who should have the right to decide if and when to use gene-editing technologies, especially when changes could affect future generations?
• How can we ensure equitable access to gene-editing technologies and prevent their misuse or exploitation?

Euthanasia

Euthanasia, sometimes known as assisted dying, refers to the practice of intentionally ending a life to relieve pain and suffering. It includes both passive euthanasia (stopping treatment and letting a patient die “naturally”, and perhaps very painfully) and active euthanasia (actively killing a patient by administering a drug). It is a topic that raises substantial ethical concerns, and it can be explored through the lens of the Four Principles Approach to bioethics: Autonomy, Beneficence, Non-Maleficence, and Justice.

• Autonomy: Respecting the principle of autonomy implies that competent adults should have the right to make decisions about their own lives, including the decision to end their life, particularly if they are suffering from a debilitating or terminal illness. However, this principle can be challenging to apply in practice. For instance, what happens if a patient’s ability to make decisions is impaired due to their condition, like severe depression or dementia? Furthermore, ensuring informed consent is critical, which means the patient fully understands their medical condition, prognosis, and the consequences of euthanasia.
• Beneficence: Beneficence refers to the obligation to act in the best interests of the patient and promote their wellbeing. In the context of euthanasia, this principle can be interpreted as a reason to relieve a patient’s suffering, even if this means hastening their death. If a patient is suffering from unbearable pain or has a poor quality of life due to an irreversible condition, euthanasia may be viewed as a way to act beneficently by relieving their suffering.
• Non-Maleficence: The principle of non-maleficence, or “do no harm,” is central to the medical profession. Opponents of euthanasia often appeal to this principle, arguing that deliberately ending a life is a fundamental harm, regardless of the circumstances. However, others argue that prolonging suffering or denying a patient’s wish for a dignified death can also be a form of harm.
• Justice: Justice, in the context of euthanasia, encompasses issues like fair access to end-of-life care and potential abuses of euthanasia legislation. It raises questions such as: Who should have access to euthanasia? Should it be available only to terminally ill patients, or also to those suffering from chronic, non-terminal conditions? Could vulnerable individuals be coerced into euthanasia? How can we ensure a fair and just system that respects individual rights while also protecting those at risk?

Balancing these principles can be complex and often depends on the specific circumstances. For example, the autonomy and beneficence principles might support a person’s right to choose euthanasia to alleviate unbearable suffering. Still, the principle of non-maleficence might argue against it, particularly if there are concerns about coercion, mental health, or the sanctity of life. Furthermore, justice considerations require the creation of robust legislation and systems to ensure fair access and protect vulnerable individuals.

Consider the case of a terminally ill patient with severe, unmanageable pain who requests euthanasia. Respecting their autonomy and acting beneficently might support their right to choose a dignified death. However, the principle of non-maleficence would require careful assessment to ensure that the patient is making a clear, informed decision, free of coercion. Finally, justice would require that the patient has had access to high-quality palliative care and that their request for euthanasia is not driven by inadequate pain management or lack of support.

Questions

• Is the principle of autonomy absolute in the context of euthanasia, or should it be limited to protect individuals who may be vulnerable or under duress?
• How should society balance the relief of suffering (beneficence) with the potential harms (non-maleficence) of euthanasia, particularly in cases where the patient’s condition might improve?
• How can laws and regulations ensure fair and equitable access to euthanasia while protecting those at risk of coercion or abuse?

Research Ethics

Research ethics is a fundamental aspect of scientific research involving human subjects, designed to protect their dignity, rights, safety, and well-being. The Four Principles Approach to bioethics – Autonomy, Beneficence, Non-Maleficence, and Justice – offers a framework to examine ethical issues in research.

• Autonomy: Respecting the autonomy of research participants is crucial. This is typically ensured through informed consent, which means participants must be fully informed about the research purpose, methods, risks, benefits, and alternatives, and their participation must be voluntary. They also have the right to withdraw from the research at any time. An infamous breach of this principle was the Tuskegee Syphilis Study, conducted between 1932-1972, in which African-American men with syphilis were not informed about their disease, were denied treatment, and were not given the option to withdraw.
• Beneficence: Beneficence in research ethics means that research should contribute to advancing knowledge and potentially lead to the betterment of society. The potential benefits of the research must be significant enough to justify any potential risks. The Willowbrook Hepatitis Experiments in the 1960s, which involved deliberately infecting children with intellectual disabilities with hepatitis, raised substantial concerns about beneficence, as the harms inflicted on the vulnerable subjects were considerable and the direct benefits to them were minimal.
• Non-Maleficence: This principle, meaning “do no harm,” requires that researchers avoid causing harm to participants and minimize potential risks. In the infamous case of the Guatemala Syphilis Study (1946-1948), U.S. researchers intentionally infected people with syphilis without their consent, leading to many suffering harm, which was a direct violation of this principle.
• Justice: The principle of justice in research ethics involves equitable selection of research participants and fair distribution of the burdens and benefits of research. It is unjust to target vulnerable populations (such as prisoners or economically disadvantaged people) for risky research because they are easier to recruit or less likely to decline participation. Similarly, it is unjust if groups bearing the burdens of research (e.g., through participation) do not also stand to benefit from the research. An instance of such injustice was seen in the Tuskegee Syphilis Study, where disadvantaged African-American men bore the risks and harms of the research, but did not stand to benefit from it.

Balancing these principles can present ethical dilemmas. For instance, a research study might have the potential to significantly advance medical knowledge (beneficence), but it might also carry potential risks to participants (non-maleficence). Ensuring informed consent (autonomy) can be challenging in certain populations (such as children or those with cognitive impairments), and issues of justice arise if certain groups are disproportionately recruited for research or stand to benefit less from it.

Careful ethical oversight is needed to manage these dilemmas. Research ethics committees or institutional review boards review research proposals to ensure they adhere to ethical guidelines. These bodies ensure that the principles of autonomy, beneficence, non-maleficence, and justice are respected, thereby helping to prevent unethical practices and protect research participants.

Moreover, the historical breaches of research ethics have led to the development of ethical guidelines and regulations for research involving human subjects. For instance, the Declaration of Helsinki and the Belmont Report are seminal documents that provide guidance on conducting ethical research. The atrocities committed during these historical breaches serve as a grim reminder of the need for stringent ethical standards in research.

Questions

• Given the historical breaches of research ethics, how can we ensure that such abuses are not repeated?
• How should we balance the potential societal benefits of research with the potential risks to individual participants?
• How can we ensure justice in the selection of research participants, especially in populations that might be vulnerable or unable to give fully informed consent?

AI in Healthcare

Artificial Intelligence (AI) has emerged as a transformative force in many sectors, including medicine. AI-based technologies are revolutionizing healthcare, improving diagnostics, streamlining treatments, and predicting patient outcomes. However, as AI continues to expand in healthcare, several ethical concerns arise. These include issues of data privacy, algorithmic bias, transparency, accountability, and the physician-patient relationship. Using the Four Principles Approach to bioethics – Autonomy, Beneficence, Non-Maleficence, and Justice – we can explore these concerns:

• Autonomy: Autonomy refers to respecting individual self-determination, often assured through informed consent. In the context of AI in medicine, patients should understand how AI is used in their care and be able to make informed decisions about it. However, AI systems can be complex and difficult for patients (and even some healthcare providers) to understand. Ensuring truly informed consent for the use of AI in healthcare poses a significant challenge. Additionally, AI can potentially infringe on patients’ autonomy by leveraging personal health data in ways that patients might not fully comprehend or agree with.
• Beneficence: The principle of beneficence suggests an obligation to act in the best interests of the patient. AI has the potential to enhance beneficence in healthcare by improving diagnostic accuracy, predicting patient outcomes, and personalizing treatments. For instance, AI can analyze vast datasets to identify subtle patterns not easily recognized by humans, potentially leading to earlier and more accurate disease diagnosis.
• Non-Maleficence: Non-maleficence, or “do no harm,” is a fundamental principle in both medicine and AI ethics. AI systems should not cause harm to patients, whether through errors, misuse, or bias. One concern here is algorithmic bias, where the AI system’s predictions are systematically skewed due to biases in the training data. For example, if an AI system is trained mostly on data from one racial or ethnic group, it might not perform well for other groups, potentially leading to harmful medical errors or disparities in care.
• Justice: Justice involves fairness in the distribution of benefits and burdens. As AI continues to advance in healthcare, we must consider who has access to these benefits. Will AI-enhanced healthcare be available to all, or only to those who can afford it? Additionally, justice requires attention to potential disparities caused by AI, such as those arising from algorithmic bias.
• Explicability. In the context of AI Ethics, researchers have proposed that we might add a “fifth principle” of explicability. This principle requires that humans (such as doctors, nurses, and patients) be able to understand the reasons that AI makes the decisions that it does.

Balancing these principles in the context of AI in healthcare presents unique challenges. For example, while the use of AI has the potential to greatly improve patient care (beneficence), it must be implemented in a way that respects patient autonomy, does not cause harm (non-maleficence), and ensures fair access to benefits (justice).

Consider a situation where an AI system is used to diagnose a rare condition. The AI system could potentially identify the condition more quickly and accurately than a human doctor, thereby acting in the patient’s best interest (beneficence). However, if the AI system was trained on biased data or the patient does not fully understand how the AI system works, this could infringe on the principles of non-maleficence and autonomy.

Questions

• How can we ensure informed consent when using AI in healthcare, given the complexity of these systems?
• How can we prevent or mitigate potential harms from AI, such as those arising from algorithmic bias or data misuse?
• How can we ensure that the benefits of AI in healthcare are distributed equitably and do not exacerbate existing health or social disparities?

Abortion

Abortion, the termination of a pregnancy before the fetus can live independently, is one of the most contentious ethical issues in healthcare. It involves complex questions about the rights of the woman, the rights of the fetus, and the role of society in determining these rights. Exploring abortion through the Four Principles Approach to bioethics — Autonomy, Beneficence, Non-Maleficence, and Justice — can provide an insightful perspective:

• Autonomy: Autonomy refers to the capacity and right of individuals to self-govern and make decisions about their own lives. In the context of abortion, autonomy often emphasizes the woman’s right to decide whether to continue or terminate a pregnancy. However, some argue that the fetus has its own potential for autonomy that must also be considered, which can complicate how this principle is applied.
• Beneficence: Beneficence in healthcare involves acting in the best interests of the patient and promoting their well-being. Supporters of the right to abortion argue that women should have the right to terminate a pregnancy if it is in their best interests, for example, if the pregnancy poses health risks or if the woman is unprepared to become a parent. On the other hand, those who oppose abortion argue that beneficence should extend to the fetus, thereby preserving its life.
• Non-Maleficence: The principle of non-maleficence, or “do no harm,” can be interpreted differently in the context of abortion. Those who support the right to abortion might argue that forcing a woman to continue an unwanted or risky pregnancy can cause harm. Conversely, opponents of abortion might argue that the termination of a pregnancy harms the fetus.
• Justice: Justice involves fairness and equality in healthcare. In the context of abortion, justice considerations might include the fair and equitable access to abortion services, ensuring that women from all socioeconomic backgrounds have the right to make choices about their reproductive health. Additionally, justice also encompasses societal considerations, such as the potential societal consequences of unwanted or unsupported children.

Balancing these principles can be complex. For instance, respecting a woman’s autonomy might support her right to choose an abortion, but the principles of beneficence and non-maleficence might be invoked to argue both for and against this right. The principle of justice may require considering not only individual rights and needs but also broader societal implications.

Consider, for example, a case in which a woman with a high-risk pregnancy chooses to have an abortion to protect her own health (a decision supported by autonomy and, potentially, beneficence). However, if you consider the fetus as a patient, the principles of beneficence and non-maleficence could be interpreted as protecting the fetus, thereby opposing the abortion. The justice principle could further complicate this case, as it might raise questions about societal responsibilities to both the woman and the potential child.

Questions

• How might one navigate the tension between the autonomy of the pregnant woman and the potential autonomy of the fetus in the context of abortion? Should potential autonomy be weighed equally to current autonomy, why or why not?
• How might the principle of beneficence be interpreted differently in the context of abortion, particularly in cases where the pregnancy poses a significant risk to the woman’s health or wellbeing?
• In terms of justice, how can we ensure equitable access to abortion services across different socio-economic groups without exacerbating social disparities? Additionally, how should societal responsibilities towards the woman and the potential child be balanced, particularly in cases of unwanted or unsupported children?

Public Health Ethics

Public health ethics is a subfield of bioethics that explores the moral dimensions and implications of policies, programs, and overarching issues associated with public health. It extends beyond the traditional domain of bioethics, which primarily engages with individual moral concerns in patient-provider relationships. Instead, public health ethics addresses broader societal matters related to the health and welfare of communities and populations. When navigating public health ethics, it’s valuable to utilize a well-established ethical framework such as the Four Principles Approach, encompassing autonomy, beneficence, non-maleficence, and justice.

• Autonomy: Autonomy underscores the importance of individuals’ capacity and right to make informed and voluntary decisions about their health and well-being. However, within the realm of public health, initiatives often necessitate measures that may encroach upon individual autonomy for the collective good. This potential infringement elicits complex ethical debates. To what extent should public health measures restrict individual choices? How do we balance individual rights with collective responsibility for public health?
• Beneficence: The principle of beneficence obligates actions that promote health and well-being. In a public health context, beneficence often bolsters policies and interventions aimed at enhancing health outcomes at the population level. This could be manifest in preventive measures such as vaccinations or public health campaigns promoting healthier lifestyles.
• Non-Maleficence: The maxim “do no harm” encapsulates the essence of non-maleficence. In the context of public health, non-maleficence signifies ensuring that public health interventions do not cause unwarranted harm to individuals or communities. This principle compels careful evaluation of any potential adverse effects of public health policies and strategies, requiring that they not outweigh their benefits.
• Justice: Justice in public health focuses on the equitable distribution of health resources and opportunities to achieve optimal health. This principle underlines the moral imperative to confront and redress health disparities that stem from social determinants of health.

In the context of these principles, paternalism, a concept that is often contentious, comes to the fore. Paternalism refers to the act of authorities making decisions on behalf of individuals or communities for their purported benefit, potentially overriding individual autonomy in the process. A few examples of public health matters that involve a degree of paternalism include health insurance mandates, vaccination policies, and drug laws:

• Health Insurance: Mandated health insurance can be regarded as a paternalistic policy. Such a policy curtails individual autonomy by requiring people to have health insurance. The justification often draws on the principle of beneficence, arguing that this mandate ensures access to necessary healthcare services, promoting both individual and societal welfare. Nevertheless, it may conflict with principles of autonomy and justice, particularly if penalties are levied against those unable to afford insurance. Most public health scholars agree there is a right to health care (that is, we shouldn’t let people die on the street from preventable conditions), but there is widespread disagreement on how to respect this right.
• Vaccination Policies: Mandatory vaccination policies also possess a degree of paternalism. Such policies impinge on individual autonomy to advance community health. The principles of beneficence (preventing disease) and justice (safeguarding individuals who can’t receive vaccinations, such as immunocompromised persons) often support such mandates.
• Drug Laws: Laws that maintain the illegality of certain drugs (such as opiates) represent another instance of paternalism. These laws aim to guard individuals and society from the potential harms associated with drug use, invoking the principles of beneficence and non-maleficence. However, they may be viewed as limiting individual autonomy, and justice issues can arise when the enforcement of these laws disproportionately affects certain societal groups.

Navigating public health ethics involves a delicate balance of individual and collective interests, often requiring a nuanced negotiation of tensions between autonomy, beneficence, non-maleficence, and justice. Paternalistic policies illustrate these tensions, revealing the complexities inherent in ethical decision-making.

Questions

• How can public health authorities balance the principle of autonomy with paternalistic policies intended to protect community health?
• In the context of mandatory health insurance and drug laws, how can the principle of justice be better upheld?
• Considering vaccination policies, how can public health officials better navigate the tension between beneficence (preventing disease spread) and non-maleficence (preventing harm to individuals who may experience adverse effects)?

Glossary