surgeons operating in dark in Ukraine

Bioethics Forum Essay

Caring for Patients in Armed Conflict: Narratives from the Front Lines   

As wounded victims came pouring into the civilian hospital in Kharkov after the Ukraine war began in February 2022, Artem Riga initially was the only surgeon on duty. Some colleagues were fleeing the country and others were delayed because of the intense shelling. Doctors had to ration food and medical supplies, performing surgery in body armor, with sandbags on the windowsills of the operating room. A sudden attack significantly damaged his hospital and left patients covered in broken glass and other debris. Amid this chaos, Riga had to teach patients to care for their own wounds.

Riga’s essay is one of 16 accounts in the Narrative Inquiry in Bioethics symposium, “Healthcare Under Fire: Stories from Healthcare Workers During Armed Conflict.” They take place in war zones around the world, describing ethical dilemmas centered on uncertainty, scarcity, and injustice. The narratives also reveal the triumph of solidarity and courage, both in the delivery of health care and in the act of writing about the experience. The essays are intended to be a means of instruction and inspiration for other clinicians in similar circumstances.

“Some write as they listen for the next missile to land near them, while others reflect on conflicts they experienced decades earlier,” write symposium editors Dónal O’Mathúna, Thalia Arawi, and Abdul Rahman Fares in the introduction. Some of these conflicts are currently making headlines.

There were 2,562 reported incidents of violence against or obstruction of health care in 30 countries or territories in 2023, as reported by the Safeguarding Health in Conflict Coalition, a 25% increase over 2022. Four hundred and eighty-seven health care workers were killed, 445 were arrested, and 240 were kidnapped, and there were 625 incidents in which health care facilities were damaged or destroyed. Other humanitarian workers have also faced risk, exemplified by the seven workers from the World Central Kitchen charity who were killed and another gravely injured in separate Israeli air strikes in Gaza as this symposium went to press. This symposium highlights a few of the people behind the statistics.

Several stories raise questions about when it is appropriate for clinicians to perform tasks outside their scope of practice. Under “normal” circumstances doing so would be considered substandard care. But in a war zone, where specialists are lacking, this might be not only permissible but essential to care for patients who otherwise would have had no treatment. For example, Ryan C. Maves, a retired infectious disease specialist with the U.S. Navy, describes being hastily retained to be a “de facto cardiologist” alongside adult intensivists treating children and pediatricians caring for adults.

In the most extreme circumstances, care was provided by people with no medical training. To Riga, this care was not only medically essential, but also an uplifting demonstration of solidarity. “It was a miracle! Before my eyes, people turned into paramedics,” he writes. “I have never seen such a transformation and mutual assistance.”

Some authors struggle with whether to stay and care for patients during war while knowing that doing so would place themselves and their families in grave danger. Ghaiath Hussein, who conducts health research in South Darfur, asks whether the risk of violence against his staff and study participants outweighs the benefits. He continues to struggle with this difficult balance, but he has decided to continue his research there because he wants users of research reports coming from conflict zones to remember that people risk everything to generate important data that can help others.

Handreen Mohammed Saeed, writing from Iraqi Kurdistan, and Ryan Maves, the retired U.S. Navy medical officer, both discuss the ethical challenges of treating patients who are combatants against the health care team’s community. Saeed recounts a situation where injured militants arrived at his medical facility where many of the staff and other patients had been the victims of those militants’ violence. Some staff struggled intensely over caring for the militants. They held meetings to carefully and sensitively talk through their emotions and the ethical principles that guided them, and to listen to people’s painful experiences. They all concluded that their primary role was to care for everyone’s medical needs, not take the role of police or judges.

“I am a doctor from the Gaza Strip in Palestine,” writes Ola Ziara, who reluctantly asks whether it is worth saving a life only to subject the person to “this overstretched healthcare system, this unrelenting crisis.” Asking the question reminds her of her own pain and helplessness in the situation. There is no answer. “We must keep caring while walking through our pain,” she writes. But she adds that she’s no longer sure they can go on, such is the “unbearable grief” they carry.

Some say that bioethics has ignored war. Perhaps because there are specific subfields of military medical ethics and humanitarian ethics, many bioethicists assume health care ethics during war is adequately addressed. However, as these stories make clear, war creates ethical challenges not only for military and humanitarian health care workers, but also for civilian physicians like Riga.

Health care workers writing in the symposium rely on the principles and frameworks of bioethics to inform difficult decisions in times of uncertainty. For example, Oksana Sulaieva, head of a pathology laboratory in Kyiv, shares how her decision to stay in Ukraine and continue to provide laboratory services to hundreds of hospitals and thousands of patients was guided by her professional obligation of beneficence. Furthermore, she stated that “our professional duties were an anchor linking us to each other against fear and panic.”   

Some of the authors see their decision to write as an act of courage inspired by ethical values. “(The) value of this collection lies not only in its documentation of the harsh realities of providing health care in acute conflict but in the intimate and generous act of narration by health care providers operating in extraordinarily difficult circumstances,” writes Kim Thuy Seelinger, research associate professor and director of the Center for Human Rights, Gender and Migration at Washington University in St. Louis. “Their series of essays fosters a deeper understanding of the moral and ethical dimensions of their collective work and the risks they take to do it. The risks they take to write.”

To Esime Agbloyor, a physician from Ghana and a bioethics fellow at the Center for Bioethics at The Ohio State University, the symposium authors demonstrate courage, altruism, sacrifice, and truthfulness. “These authors chose to speak up and, by so doing, exude the virtuous traits that Aristotle describes,” she concludes. “They are worthy of praise and admiration.”

We agree, and we urge everyone to pay attention.

Emily E. Anderson, PhD, MPH, is a professor of bioethics at Loyola University Chicago, where she directs an NIH Fogarty-funded research bioethics training program for Ukrainian physicians and scientists in collaboration with Ukrainian Catholic University.

Dónal O’Mathúna, PhD, is a professor in the College of Nursing and associate director of research in the Center for Bioethics at The Ohio State University and an editor of the symposium. He collaborates with Dr. Anderson on an NIH Fogarty-funded project investigating research ethics during war.

person entering maze of human brain

Bioethics Forum Essay

The Mind is Easy to Penetrate. The Brain, Not So Much

Dualists rejoice! That much-maligned ontology got a new lease on life recently with vividly contrasting cases involving Scarlett Johannsen’s voice and Elon Musk’s brain.

Well, not Musk’s brain but that of a patient volunteer in his Neuralink experiment, and not Johannsen’s voice but that of a strikingly similar vocal double. Yet the parallel mid-May dustups reveal something interesting about minds and brains: One is easy to penetrate, the other far more challenging.

When OpenAI released GPT-4o, its model for “more natural human-computer interaction” was named Sky. The feminine, warm, and (to some listeners) rather flirty voice struck many as remarkably similar to that of Johannsen as the audible representation of Samantha in the operating system in the 2013 film Her. (Spoiler alert: In the film a rather sad and lonely fellow, played by Joaquin Phoenix, falls in love with the disembodied AI, only to be traumatized upon discovering that Sky has been unfaithful, servicing many such users, so to speak.)  It happens that the participants in OpenAI’s demos were mostly young men, presumably not as emotionally involved as the lead character in Her but visibly charmed.

Enter Scarlett Johannsen, who at first expressed concern that Sky was “eerily similar” to her Samantha voice, pointing to an interesting intellectual property issue about what counts as similarity from one voice to another.  It turns out that OpenAI’s Sam Altman had approached Johannsen about voicing the new operating system. The circumstances added up to sufficient cause for suspicion for her to retain legal counsel. Had OpenAI trained its Sky algorithm on Samantha? Was Sky a deepfake? But Altman assured Johannsen that the company had hired a voice actor for the demo and had no intention of resembling her Samantha character. His company hit the delete button on Sky. The sides seem to have parted friends. One might say they remain on speaking terms.

Underneath all the hubbub is a key point: voices matter, metaphorically and literally. Facing death, Socrates said his inner voice told him when he was on the wrong course. Many of us strive our whole lives to be heard, to “find our voice.”  Through the goopy medium of amniotic fluid we bond to our mother’s voice. People with auditory hallucinations have trouble distinguishing those that are real from those that are not. When we’re not sure about the objectivity of an ominous sound, we reach for intersubjectivity: “Did you hear that?”

Now consider the overhyped brain implant experiment conducted by Elon Musk’s Neuralink on a person with quadriplegia, a blatantly conflicted case of science by press release. Following the first few post-op weeks, about 85% of the device’s threads had slipped away from their target sites in Noland Arbaugh’s brain, with further surgery determined to be inadvisable. Someday perhaps a more responsibly described study will succeed in providing people like Arbaugh with brain-linked rehab outside strict laboratory conditions. More likely that will be accomplished by one of the legitimate teams that pioneered such efforts long before late comer Neuralink.

Meanwhile we may reflect that the three-pound lump of jelly between our ears is vastly more difficult to manipulate than the airy stuff of mind said to distinguish zombies from the last of us.  

Jonathan D. Moreno is the David and Lyn SIlfen Professor at the University of Pennsylvania and a fellow of the Hastings Center.

photo of former president nixon with arms outspread and fingers in v sign

Bioethics Forum Essay

The Overlooked Father of Modern Research Protections

Thirty years gone, but the spirit of Richard Nixon still rattles around in my head like Marley’s ghost. Instead of ledgers and cash boxes, he carries an Enemies List. “Never forget, the press is the enemy. The establishment is the enemy. The professors are the enemy. Professors are the enemy. Write that on a blackboard 100 times and never forget it,” Nixon told Henry Kissinger in 1972. I check at least two of those three boxes, but I doubt I would qualify for Nixon’s list anymore. The more time passes, the more Nixon looks like a strange, unlikely political ally.

For American liberals of a certain age, especially those disillusioned with the current state of politics, it has become common to look back in astonishment on the progressive domestic measures that Nixon signed into law. The same man whom Hunter S. Thompson called “a political monster straight out of Grendel” signed the Clean Air and Water Acts, the Equal Employment Opportunity Act, the Endangered Species Act, and measures establishing the Environmental Protection Agency and the Occupational Safety and Health Administration. But the progressive measure overlooked even by Nixon enthusiasts is the National Research Act, which Nixon signed on July 12, 1974, and which gave us our modern research protection system.

If there were an origin story for the National Research Act, it would probably begin in early 1972. In January, Mike Wilkins, a young internist, appeared on an ABC news report exposing the horrific conditions at the Willowbrook State School in Staten Island, where institutionalized, intellectually disabled children had been intentionally infected with hepatitis A and B. Shortly afterwards, Martha Stephens, an English professor at the University of Cincinnati, organized a press conference protesting Pentagon-funded studies in which vulnerable cancer patients were given whole-body irradiation to test how much radiation a soldier could withstand in a nuclear attack. But the most explosive report came in July, when documents provided to the Associated Press by whistleblower Peter Buxtun exposed the Tuskegee syphilis experiment, a study by the U.S. Public Health Service in which poor, Black men in Alabama with syphilis were deceived and deprived of treatment for 40 years.

Whether Nixon was shocked by the scandals is hard to say. He certainly had no sympathy for whistleblowers. His covert Special Investigations Unit, aka “the plumbers,” was devised to prevent internal leaks and punish violators. Nixon was also preoccupied with his re-election campaign. On June 17, 1972, just over a month before the Tuskegee story broke, Washington police arrested five men sent by the plumbers to break into Democratic National Committee headquarters at the Watergate Hotel. By February 1973, when Democratic Senator Edward Kennedy introduced legislation to establish the Senate Watergate Committee, Nixon was waist-deep in a scandal of his own.

It is Edward Kennedy who deserves most of the credit for the subsequent research reforms. As chair of a Senate subcommittee on health, Kennedy had been holding hearings on a range of medical abuses when the Tuskegee story broke. In November 1972, he called for the establishment of federal policy on use of human subjects in medical experimentation, charging that medical researchers were exploiting the poor and uneducated. He began hearings on the Tuskegee study in February and March 1973. Yet the Watergate scandal continued to intrude. When Peter Buxtun, the Tuskegee whistleblower, was giving his Senate testimony, he was interrupted by two men rushing into the room. “I’m feeling kind of stupid. I’m halfway through a sentence,” Buxtun told me when I interviewed him several years ago. When Buxtun returned to his seat, the woman sitting next to him leaned over and whispered, “Haldeman, Ehrlichman and Dean have resigned.”

When the Tuskegee hearings were over, Senator Hubert Humphrey of Minnesota introduced a bill to create a National Human Experimentation Board. Humphrey had in mind a powerful, centralized board of experts, appointed by the president, with the authority to regulate and review all federally funded medical research. A powerful board seemed like the best way to protect vulnerable people from being exploited by a medical establishment that viewed them as useful “research material.” But the medical establishment vigorously opposed any effort at regulation and Humphrey’s bill failed.

In light of that failure, Kennedy introduced a bill that would become the National Research Act. Although it is often portrayed as a landmark reform, the National Research Act was actually a watered-down political compromise. It established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research–a temporary body with purely advisory power–and delegated the oversight of medical research to local peer-review committees (IRBs) of the sort already in existence. It also endorsed a patchwork of federal guidelines governing research that has come to be known as the Common Rule. Yet as depleted as the National Research Act was, it still marked a significant improvement on the status quo.

As far as I can tell, there is no written record of Nixon’s opinion on the National Research Act. On July 12, 1974, the day Nixon signed it into law, newspaper headlines were dominated yet again by Watergate. The House Judiciary Committee had just released 3,888 pages of damning evidence of the Nixon White House’s abuses of power. Later that day, John Ehrlichman, a top Nixon aide, was found guilty of four criminal charges. According to Woodward and Bernstein’s The Final Days, Nixon boarded Air Force One at 4 pm that day to take refuge at his private estate in San Clemente. It would be just over three weeks before he resigned in disgrace.

The evidence suggests that when Nixon signed the National Research Act into law, he had other pressing matters on his mind. In fact, it is entirely possible that he gave it no thought at all. Yet it is not impossible that he endorsed the act. Nixon was nothing if not complicated: a shy, socially inept man who chose a life in the public eye; a rabid anti-communist who established diplomatic relations with China; a conservative who expressed racist views in private yet desegregated more Southern schools than any other president. I would like to imagine that he approved.

Carl Elliott, MD, PhD, is a professor in the department of philosophy at the University of Minnesota and a Hastings Center fellow. His new book, The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No, will be published in May. @FearLoathingBTX

Illustrative image for Catastrophe Ethics and Charitable Giving

Bioethics Forum Essay

Catastrophe Ethics and Charitable Giving

How can we live a morally decent life in a time of massive, structural threats that seem to implicate us at every turn? Climate change is the paradigm example here, as it poses devastating risk to current and future people, and virtually everything we do contributes to it through the emission of greenhouse gases. So, if I’m trying to carve out a justifiable life, how should I respond? Am I permitted to fly? Should I buy an electric car? Go vegan?

These are the central questions of my new book, Catastrophe Ethics: How to Choose Well in a World of Tough Choices. Of course, none of my little individual actions will have a meaningful impact on the climate. Even the choice to take a flight—which is one of the more environmentally expensive things many of us will do—contributes an infinitesimal fraction to the trillions of tons of greenhouse gases accumulating in the atmosphere and raising the global temperature. So, is it not a bit precious to worry about each thing I do? This tension between feeling implicated in massive structural harms and being largely incapable of making an impact on those harms is what I call The Puzzle of individual ethics in an era of collective catastrophe.

Although the idea for the book was born out of climate angst, one of the central hooks is that our modern world is so massive and complex that the structure of The Puzzle replicates in many areas of our lives. Many of our purchases make us participants in exploitation. Our electronics likely rely on modern day slavery overseas, and our favorite brands may use sweatshop labor or support union-busting.

In writing the book, I was surprised to discover that charitable giving is also part of the broad discussion of how to live well in such complicated times. As Judith Lichtenberg notes in her discussion of “The New Harms,” the way in which our participation in massive harms quickly becomes overwhelming and can feel intensely demanding parallels the now-old debate about how much we are obligated to give to charity in an effort to relieve suffering. In my terminology: the ethics of charitable giving feels a bit like catastrophe ethics.

This led to an experiment of sorts. Since I was writing a trade book, for which I would earn royalties by thinking about catastrophe ethics, I decided to donate some of my proceeds to a charitable organization. But which one? Could the work I was doing help me to choose?

I decided to find out.

Lessons from Catastrophe Ethics

Among my key findings, the first, perhaps most crucial, one is the following: Because our individual contributions to massive, structural harms don’t make a meaningful difference to reducing those harms, philosophers like Walter Sinnott-Armstrong are correct to note that we therefore are not obligated to refrain from making those contributions. But it would be wrong to infer that, as a result, nothing we do matters morally. Not everything that is morally permissible is good or recommended; I may do something that is within my rights, but that is nonetheless some flavor of bad, vicious, or otherwise crappy.

I characterize this first lesson as the insight that we have reasons to respond to catastrophes, even if we aren’t duty-bound to do so.

Second, then, and especially important for our discussion of charitable giving: The threat of catastrophe gives us reason to respond in different ways. There are negative reasons—that is, reasons not to be part of the problem and therefore to avoid doing things that contribute to it. And there are positive reasons—reasons to be part of the solution, like advocating for social reform, getting involved in political solutions, and giving our resources (time and money) to efforts to generate change. Indeed, activists like Mary Annaise Heglar argue that the positive reasons are in fact more important than the negative ones; despite working in the climate movement, she doesn’t care if you recycle, but she wants you in the climate fight.

This is how charitable giving becomes directly implicated in catastrophe ethics. Some people have more money than time to give to any cause. And if the massive threats of today ground reasons both not to be part of the problem (negative reasons) and reasons to be part of the solution (positive reasons), then, plausibly, many of us have good reason to give money to all sorts of organizations trying to mitigate the harms we face.

Triaging Reasons

How, then, do we organize the mass of reasons grounded in the many catastrophes we face?

In my view, because we do not have a duty to respond to catastrophe in a particular way, we have latitude to determine how to act, and so how to live a life that is justifiable. There is far more to be done than any one of us could ever do, and so I propose a kind of division of moral labor: each of us gets to decide how to respond based on our subjective values, interests, passions, strengths, and privilege.

In addition, I think there are special reasons for some of us to include particular ways to respond, and this is due to our social and economic positions. As a 21st century American, I am not well-positioned to significantly reduce my carbon footprint: I live in a car-based society, our electric grid has not quickly decarbonized, and my job and family require a lot of travel. Thus I, like most Americans, have a relatively high carbon footprint. But any success I enjoy is also due significantly to the massive extractive enterprise of American history: I get to live the life I do because America has emitted, since the Industrial Revolution, more greenhouse gases than any other country. One way to think of this is that I have an enormous amount of climate privilege, and I’m continuing to contribute to climate change in an outsized way.

Thus, while there are some harms I can extract myself from (for instance, I can boycott companies that utilize slave labor), I cannot adequately respond to the negative reasons generated by climate change. And the fact that I’m continuing to benefit from climate change—which is causing and will continue to cause serious harm—makes me a participant not just in harm, but in injustice.

These features together suggest to me that I have especially strong reasons to, as Heglar says, “join the climate fight” by responding to the positive reasons to create change.

The Judgment: Where to Donate

At the end of this reasoning, I came to a few conclusions about my charitable giving. One is perhaps best summarized as a response to the philosophy of effective altruism, which recommends donating as much money as you can to the most effective organizations, so that you do as much good as possible.

While I think there is a lot of moral weight to the idea of “doing as much good as you can,” there is more to the ethics of charitable giving than just that. I have special reason to donate to climate organizations because of my position as a beneficiary of America’s extractive economy. And because of my career and my interests, I know a lot about climate change, and so feel well-positioned to choose organizations that do important work. Finally, because we are allowed latitude in the way we respond to catastrophic threats, each of us can choose according to our values.

Based on this reasoning, I decided to donate a portion of the proceeds from my book to the organization Cool Earth, which protects the rainforest, but does so in a specific way: by investing in Indigenous peoples and local communities. Cool Earth’s efforts not only contribute to environmental conservation, they also address broader issues of social justice, equity, and human rights in the context of climate change. By engaging with local communities, promoting sustainable practices, and advocating for the rights of Indigenous peoples, Cool Earth exemplifies a holistic approach that integrates environmental protection with social empowerment and ethical considerations.

Because I believe in wide latitude concerning how each of us responds to catastrophe, I don’t think anyone reading this has an obligation to support Cool Earth. However, I do believe that many people are like me in relevant ways: They would like to respond to climate change; they have benefitted from historical emissions and contribute in an outsized way to ongoing emissions; and they have the means to donate to charity. For such folks, I believe the reasons commend giving to organizations like Cool Earth.

They are in the climate fight, and giving is one way that we can join them.

Travis N. Rieder, PhD, is associate research professor at the Johns Hopkins Berman Institute of Bioethics, where he directs the Master of Bioethics degree program. He is a Hastings Center fellow. @TNREthx

red dna against black background

Bioethics Forum Essay

How to Avoid a Genetic Arms Race

A quiet biological revolution in warfare is underway. The genome is emerging as a new domain of conflict. The level of destruction that only nuclear weapons could previously achieve is fast becoming as accessible as a cyberattack.

Now for the bad news. Great power conflicts and proxy wars are back. The rules-based world order crumbles while an unpredictable–and potentially unstable–multipolar one emerges.

Rapidly accelerating breakthroughs in our ability to change the genes of organisms are generating medically thrilling possibilities. They are also generating novel capabilities for biological weapons, a form of warfare that has been largely abandoned for decades. Take the recent AI-enabled advancements in gene-editing, construction of artificial viral vectors for human genome remodeling, protein folding, and the creation of custom proteins. Far outpacing the regulatory environment, these advances are facilitating the weaponization and delivery of harmful bioagents–overcoming impediments that previously made biological weapons impractical.

Speculation about “genetic weapons” capable of singling out specific groups for infection dates back to the 1970s. In 2012, Vladimir Putin mused publicly about weapons that could be “as effective as nuclear” but “more ‘acceptable’ from the political and military perspective.” He predicted that nuclear weapons would, over the next half- century, become eclipsed by “fundamentally new instruments for achieving political and strategic goals.” The future of war, he said, is “based on new physical principles,” including “genetic” science.

The 2020 edition of Science of Military Strategy, an authoritative textbook published by China’s National Defense University, considers how biotechnology could serve as “a brand new territory for the expansion of national security” with “the use of new biological weapons, bioterrorism attacks, large-scale epidemic infections, specific ethnic genetic attacks, the purposeful genetic modification of the ecological environment, food and industrial products, and the use of environmental factors.”

Although its intelligence community’s 2016 worldwide assessment described genome editing as a potential “weapon of mass destruction,” the United States has been slow and reluctant to face the new challenge. One reason is that it is not clear what this challenge is, how bad it actually is, and what requires immediate attention.

Biodefense in the Age of Synthetic Biology, a report by National Academies of Sciences, Engineering, and Medicine developed at the behest of the U.S. Department of Defense, has since its publication in 2018 been the main guide to understanding probable biological threats. It advised paying more attention to the possibility of recreating known pathogenic viruses, making existing bacteria more dangerous, and making harmful biochemicals via in situ synthesis. It was not without blind spots, however. For example, it considered gene drives only as applied directly to humans, ignoring the more indirect strategic applications, such as agricultural.

In his recent book, zoologist Mathew Cobb admits to being most concerned about gene drives and human genome editing, in addition to pathogen manipulation. A recent RAND report directs attention also to the Internet of Bodies (internet-connected smart consumers and medical devices) and genomic surveillance and enhancement.

Nor is the generation of basic genetic data simply the province of sophisticated laboratories. Many elaborate datasets are open source and online, facilitating scientific exchange. Although most genetic data are de-identified, future technologies may be able to re-identify them. The Biden administration appreciates this threat. On  February 28, the president signed an executive order seeking to prevent the sale of bulk sensitive personal data. The executive order has a legal basis in the National Emergencies Act and International Emergency Economic Powers Act and notes the need to “protect United States persons’ sensitive personal health data and human genomic data from the threat identified in this order.” That threat is the “continuing effort of certain countries of concern to access Americans’ sensitive personal data.”

Amid the apparent collapse of the post-World War II rules-based order, one of the worst things that could happen is a genetic arms race for which international conventions are unprepared. The Biologic and Toxin Weapons Convention bans proliferation of bioagents and toxins that have no peaceful use, but it has no formal verification regime system. There was at least one alleged case of noncompliance by the Soviet Union in 1981 involving a weaponized fungus, far from the exquisite genomic targeting that may eventually be practicable.

The convergence of genetic technologies and intense competition among highly motivated actors along with historic geopolitical shifts requires the attention of the international life sciences community and bioethicists to establish guidance for what was once a threat in the realm of science fiction.

Yelena Biberman, PhD, is an associate professor of political science at Skidmore College.

Jonathan D. Moreno, PhD, is the David and Lyn Silfen University Professor of Ethics at the University of Pennsylvania and a Hastings Center fellow. @jonathanmoreno.bsky.social

Syrian refugee camp

Bioethics Forum Essay

In the Shadow of War: Health Conditions in the Za’atari Refugee Camp

As our bus rumbled through the cool desert landscape, the lively chatter among the mission volunteers was swallowed by a sudden and collective hush as we spotted our destination. Emerging like a mirage after an hour and a half of travel, we entered a city that was unlike any I had ever seen before. Built up of makeshift metal shelters and the resilience and sheer determination of those who call it home, we entered Za’atari, the world’s largest refugee camp for Syrians.

In January I traveled to Jordan as a medical volunteer with SAMS (Syrian American Medical Society) to provide medical care to refugees in the Za’atari camp. Since the start of the Syrian civil war in 2011, it is estimated that over 14 million Syrians have been displaced by conflict and forced to flee their homes in search of safety and shelter. Over 5 million displaced Syrians live as refugees in camps, settlements, and host communities in neighboring countries. Created in 2012, the Za’atari refugee camp now houses 80,000 Syrian refugees. At points in its history, it has been the fourth largest city in Jordan, a country the size of the state of Maine with a population of over 10 million. 

While working as a medical volunteer in the SAMS clinic at the edge of the camp, I quickly realized I was in a clinical environment I had never seen before. Despite my training in bioethics and my knowledge of theories of resource allocation and distributive justice, I was unprepared for the sheer scale of medical needs among the refugees I was there to serve, and for what resource scarcity meant under these conditions.

Most of the physicians I had traveled with brought medical equipment with them. Everyone improvised, fashioning Dixie cups into inhaler masks for babies and using iPhone flashlights during dental extractions. We could not offer lab tests; there was no lab. Follow-up care would be available six months later –the next time a SAMS medical mission trip would be back at Za’atari camp. We were unable to promise referrals to patients, and there was no guarantee they could see a specialist. The need for specialized medical care, such as dermatology, was so great that fights among refugees would break out in the clinic as it became evident that we would not be able to accommodate all the patients needing to be seen.  

During our six-day medical mission, over 90 volunteers and physicians treated upwards of 4,000 people, including 3,500 seen in the clinic and 600 who were transferred to regional hospitals for specialist procedures and surgeries by other physicians on the mission. We knew that what we could do in a week was severely limited and usually would not solve the daunting problems our patients faced. Yet we also knew that, for these 4,000 people, being seen by a medical mission team once every six months was often the extent of their access to specialized medical care.

Underlying this entire experience was my constant awareness that only 90 miles west of us, Palestinians in Gaza were experiencing a dire humanitarian crisis. It was impossible to ignore the realization that the harrowing living conditions at Za’atari would be the best-case scenario in Gaza. If Palestinian civilians in Gaza survive the multiple threats in a resource-starved war zone – bombings, shootings, disease, starvation–and escape or are forced out of Gaza, they will end up in a refugee camp. If living in a densely packed refugee camp is the best outcome for traumatized civilians escaping conflict, we have miserably failed one of the world’s most vulnerable populations.  

Some of the refugees at Za’atari have lived in the camp for more than 10 years, and their medical needs have changed over time. The worst things we saw were not disfiguring war wounds, but treatable health conditions that had become debilitating due to lack of medical care. While the scars, burns, and wounds of war were evident on people’s bodies, it was uncontrolled asthma, respiratory infections, and decaying teeth that impaired their everyday lives. These chronic conditions were caused and worsened by living conditions they had no ability to change. Mold growing in the shelters, and desert sand, caused respiratory illnesses. The cheap, high-sugar diets rotted their teeth. Poverty, displacement, and lack of health care are the chronic comorbidities of Syrian refugees.

Ten years ago, during the Syrian civil war, the horrors of that war were front-page news, as Gaza is today. The continued suffering of displaced populations who have no way back home–because their homes have been destroyed–no longer commands the world’s attention. They are forgotten, their futures dismissed, and their aspirations abandoned. The refugee camps that were meant to be temporary solutions have become permanent. Displaced Palestinians have and will continue to suffer the same fate as Syrian, Rohingya, Somali, and Sudanese refugees.  

The horrors of the Syrian civil war include the long-term physical and psychological effects of conflict and displacement. In response, SAMS has been increasing the capacity of its medical missions, hoping to provide more medical treatment to a population that desperately needs it. Several other groups offer care inside the camp, including Doctors Without Borders, International Medical Corps, and the Jordanian Red Crescent. Yet, it is still abundantly clear that more medical care, resources, and support are desperately needed there.

Despite the harrowing reality that the Syrians who have survived and escaped war now face, many remain hopeful that, one day, they will return to their homes. The international community must recognize war and displacement as a collective issue, not an individual one. Jordan is a country that continues to be exemplary in addressing the world refugee crisis by taking in hundreds of thousands of refugees, including them in national health care and education systems, and providing access to livelihood opportunities within the country. Vastly wealthier countries have much to learn from Jordan. But if we can achieve this imperative shift in thinking about the refugee crisis as a collective responsibility, perhaps the international community will finally see and respond to the humanity of displaced and refugee populations, rather than despairing about and then forgetting their suffering.

Sana Baban, MBE, is a project manager and research assistant at The Hastings Center. She will begin medical school later this year. @sana_baban

clinicians meeting around a table

Bioethics Forum Essay

Emerging from the Cacophony of Clinical Ethics Consultation

Seated in a conference room surrounded by a group of animated clinicians during a family meeting, I found myself a bit bewildered during the first weeks of my clinical ethics fellowship. I was uncertain of what was expected of me. What were they discussing? Why were they speaking so quickly and over one another?

I am confident in my abilities and pride myself in being a quick learner, yet this moment was disquieting. I had been transported into a different world. I remembered the simulation cases we did during my PhD program in bioethics. There, I effortlessly played the role of a clinical ethicist. However, this experience was starkly different.

As a new clinical ethics fellow, I was full-in with a team of seasoned clinicians. I grappled with the relentless buzz of medical jargon and information coming piecemeal from multiple directions simultaneously. The staccato of the conference room was a far cry from the academic calm training simulations back in grad school.

But I had underestimated the challenges I would face as an English-as-a-second-language (ESL) speaker when immersed in the dynamic space of the hospital. I take pride in my English proficiency. I came to the United States from Bangladesh for my advanced degrees, taught classes, presented talks, facilitated training sessions, and published papers—all in English. But this was different. This was like learning a third language.

I am not a clinician, but I am a curious observer grounded in theory and academia. Being an outsider has been a strength. As a nontraditional clinical ethicist, I have had a distinct perspective on the cultural nuances in the hospital. In that delicate space, language holds significant weight, with some meanings left unsaid and others only understood through the familiarity of experience. All this should have been a positive. But it was incredibly hard to piece together.

And it was a bit embarrassing. In the hospital’s go-go pace, I often sensed that people assumed that I was slow, missing the point, or not fully engaged. The nagging question was: How would I navigate these new waters and assume my new role as an ethics consultant? The challenge of grappling with all the intricacies and nuances of this truly foreign language made me doubt my ability to contribute in a high-paced, high-stakes clinical setting. Indeed, I questioned my suitability to become a clinical ethicist.

I did a bit of diagnostics and quickly realized that excellence in clinical ethics demanded mastery of another language of medical facts and linguistic shorthand that was often heavy-handed, jargon-laden, and incomprehensible to the nonclinician. This discourse was distinct to my ears as an ethics-educated entrant and a nonnative English speaker new to the clinic.

In addition, three formidable challenges stood in my way. First was the medical jargon spoken in the fast-paced and emotionally laden space of a consultation. Second was the stress of these situations. It was emotionally challenging for everyone, and the performative nature of the meeting compounded the difficulty in comprehending what people were really saying. Finally, there were the cultural values that I brought to the role. I had been acculturated, as a South Asian woman, to be submissive rather than assertive and not to speak up. The fear of others judging me as a brown non-Westerner added another layer of complexity.

With a bit of trepidation, I began to share my concerns with my very supportive team. Reflecting on my journey, I find solace in the warm embrace of my mentors and colleagues and their welcoming receptivity. Together, we embarked on a learning quest and tailored the expectations for my professional development to my unique background. Hours were spent in earnest conversation, seeking solutions to my challenges. I pushed, and we brainstormed, identifying three key strategies that could make a significant difference.

Firstly, my peers needed to appreciate that I was neither a native English speaker nor a clinician. Secondly, I proposed one-on-one communication with clinicians in a relatively quiet setting, helping me understand the case situation we were working on and allowing me to bring that knowledge with confidence into the team meetings. And, finally, I advocated for a structured pause and debrief after each encounter, providing a space for reflection and guidance with my mentors.

These steps proved invaluable for my educational needs. Through many late-night catch-up sessions, I began to learn how to decipher signals from noise during consult meetings and turn cacophony into intelligible conversation. I gained insight into the overarching and recurring themes of a case. I learned to detect and dissect each conversation segment, mastering the art of absorption and articulation. I wish I had reached out sooner for help.

What have I learned that can help other ESL ethics consultants? I’ve realized that despite our proficiency in English, we often require more time—even if it’s only a few seconds—to respond. Rather than this being viewed as a hindrance or deficiency, we need to reframe it as something positive. Slowing the pace and being more deliberate can yield valuable insights, uncovering perspectives and process improvements that can be hidden within the rapid, get-it-done flow of medical conversations. A slower pace can be calming and make possible a more nuanced analysis that might otherwise be overlooked.

To my knowledge, I am the first woman from Bangladesh undergoing training in clinical ethics in the U.S. I hope that I am not the last. My experience should be instructive to those who will train the next generation of clinical ethicists. If the call is for a more diverse workforce in clinical ethics to meet the needs of an increasingly diverse patient population, then fellowship programs must adapt to nontraditional fellows like me. As a group, if given the chance and the support, we will enrich the discourse in the clinic.

I look forward to being part of that conversation.

Fahmida Hossain, PhD, HEC-C, is a medical ethics fellow at Weill Cornell Medicine.

Acknowledgement:

I acknowledge and am indebted to Dr. Joesph J. Fins for encouraging me to share my insights and experiences as an emerging clinical ethicist. His support, guidance, suggestions, and deep conviction that open discussion of these matters benefits all in the field provided grounding, commitment, and courage to write this piece. I further acknowledge my colleagues in the Division of Medical Ethics and the clinicians of Weill Cornell for offering a hospitable clinical space.

logo and title of the World Health Organization

Bioethics Forum Essay

Financing Reforms to Meet a Pivotal Moment in Global Health

In May, the 194 member states of the World Health Organization (WHO) will decide whether to adopt two international instruments with the potential to transform how the world prepares for and responds to pandemic threats: reforms of the International Health Regulations (IHR) and a new pandemic treaty (dubbed the pandemic agreement). Each draft instrument contains bold new commitments for disease surveillance, capacity building, and more equitable access to health products, and we discussed the strengths, limitations, and ethical foundations of these proposals recently in the Hastings Center Report. But none of these reforms can be achieved without ample and sustainable funding.

Financing takes two broad forms: shoring up WHO’s financial base allowing it to implement a global health agenda unfettered by the demands of a small set of donors and funding to underwrite low- and middle-income countries’ activities under the new instruments. In this essay, we discuss these major reforms and then explore the significant challenges and opportunities for financing them.

Proposed Reforms and Why They Matter

This year will be the most important moment for global health since WHO’s founding in 1948, but only if states give major reforms their full political and financial backing.

The Pandemic Agreement

In response to Covid’s profound preparedness and response shortcomings, 25 heads of state and international agencies issued an extraordinary joint call for a new pandemic agreement that would have the force of international law. The World Health Assembly (WHA) established an intergovernmental negotiating body to draft and negotiate the agreement, with core obligations that could make the world healthier and safer, and with equity as its north star.

One Health. The One Health approach is sometimes called deep prevention because it addresses the major drivers of disease outbreaks, including anthropogenic, ecological, and environmental risks. Most infectious diseases have zoonotic origins, whereby animal infections spill over to humans. Climate change, deforestation, intensive animal farming, and trade in wild animals bring animals and humans into closer proximity, sparking spillovers. The draft text of the pandemic agreement released this month creates norms for a range of One Health commitments, but actual obligations to develop financial and technical support mechanisms needed to fulfill these commitments take effect only “as appropriate”–language that serves as a legal escape hatch. Resource-constrained nations accordingly feel they are being cajoled into these responsibilities with few assurances that funding to underwrite them will follow. The failure from governments to provide even modest resources may miss an opportunity morally and financially, as pandemic prevention would cost just a fraction of that of a full-scale pandemic–by one account representing less than 1/20th of the value of lives lost to emerging pathogens.

Equitable access to countermeasures. Inequitable access to life-saving vaccines and other countermeasures became one of the major themes of the Covid crisis. The WHO-led COVAX facility was formed to facilitate vaccine equity, but COVAX’s work was thwarted by high-income countries, which gobbled up early vaccine supply resulting in scarcity and unaffordable prices to others. By the end of 2021, vaccination coverage was close to 75% across high-income countries compared to less than 2% in many low-income countries, falling well short of COVAX’s 20% coverage target. This cannot possibly be an acceptable outcome.

The draft agreement attempts to remediate this disparity in future pandemics by incorporating obligations to build national, regional, and international clinical trial and research and development capacities in low- and middle-income countries and promote open scientific exchange. The draft also calls on countries to include terms in publicly funded research and development agreements that effectively condition the provision of public money on manufacturer commitments that enhance equity during health emergencies, such as on licensing, affordable pricing, technology transfer on voluntary terms, and adherence to WHO product allocation frameworks. The draft would establish a WHO-run global supply chain and logistics network to avoid competition for vital resources and attempts to promote the transfer of technology and know-how. The African bloc, however, has slammed the use of waffling language that eschews any attempt to hold high-income countries to account for failing to fulfill their obligations to ensure equity. Others bemoan the potential disruption these reforms could make to the research and development ecosystem that already disincentivizes investment in vaccines.

As we write, the make-or-break issue is the construction of a workable system of pathogen access and benefit sharing (PABS), drawing inspiration from the WHO’s Pandemic Influenza Preparedness (PIP) Framework, pursuant to which countries would share pathogen samples and associated genetic sequence data discovered within their borders with a network of WHO-coordinated laboratories. Manufacturers that create viable countermeasures using PABS samples or data would then provide 20% (10% free of charge and 10% at reduced prices) of their real-time production through WHO’s global supply chain network for distribution based on public health risk and need. Manufacturers would also annually contribute funding for the PABS system and make voluntary nonmonetary contributions to support it, including guarantees on tiered pricing, scientific collaboration, capacity-building, and arrangements for the transfer of technology and know-how.

Proponents hope that codifying legal obligations on PABS would support global health security and justice. However, the draft is silent on how manufacturers, universities, and other private users–who are not traditionally considered actors under international law subject to treaty obligations–will be persuaded to use the system or whether ratifying nations will use their domestic lawmaking power to require it. Manufacturers might also elect not to create low return-on-investment products such as vaccines, so a workable PABS has to contemplate how to keep them engaged. Nonetheless, establishing a strong PABS system through the agreement is vital, as 290 scientists recently warned that without it vaccine inequity will be almost guaranteed in the next pandemic.

Accountability. No agreement can be effective without ways to hold parties to account for the commitments they make. International law, operating independently of other inducements, is notoriously weak as a mechanism to change behavior when up against national self-interest during a global crisis. Unsurprisingly, negotiators have had a hard time innovating new compliance levers. The draft agreement would establish a conference of the parties (COP) to periodically review treaty implementation and mobilize funding, but it contains no independent monitoring or oversight. It ought to have an independent committee or other mechanism to monitor states’ compliance and reporting, and a separate peer review mechanism, both of which could report to an empowered COP with civil society and stakeholder engagement and the power to publish reports. It could connect the treaty to existing global monitoring and evaluation frameworks, and should introduce a system of incentives for compliance and distinctives for noncompliance. If the pandemic agreement is to live up to its stated objectives and give the world a fighting chance when the next pandemic threat emerges, the COP will need to develop the incentive structure that makes fulfilling treaty commitments more enticing than the alternative.

The International Health Regulations

A working group of WHO member states has simultaneously been negotiating amendments to the IHR, a legally binding agreement among 196 IHR states parties designed to detect, assess, and report emerging pathogenic threats. Led by the U.S., governments proposed over 300 amendments–indicating a near-universal desire to improve the regulations which were last significantly reformed after the SARS-CoV-1 pandemic of 2002-2004. While IHR reform has had less public attention than the pandemic agreement, the regulations have a clear advantage: they are already in place, and amendments come into force automatically for all WHO members unless they explicitly opt out.

Core capacities. The IHR requires states parties to develop, strengthen, and maintain capacities to detect, assess, notify, report, and respond to public health risks. Weak health systems thwart pandemic responses, but while the IHR obliges member states to assist and cooperate “to the extent possible,” there has been precious little technical and financial assistance.

Equity. The IHR is currently silent on equity, so proposals related to equity have been at the heart of the negotiations. Operative proposals include a new article on access to health products, technologies, and know-how that would give the WHO Director-General the power to make recommendations to promote timely availability and affordability of countermeasures to respond to a public health emergency of international concern. Some IHR negotiators from high-income countries have attempted to consolidate equity measures under the pandemic agreement, though the implications are unclear.

Accountability. Accountability mechanisms are virtually nonexistent in the IHR, save for a never-used dispute settlement mechanism. The U.S. and the African bloc have proposed “compliance” or “implementation” committees, whose function would be to boost IHR adherence thus adding a welcome layer of accountability. There are financial costs, however, and without an identifiable capital source, this could result in an unfunded mandate.

WHO Financing Reform

As we’ve previously discussed, in 2022 WHO member states made an important decision to shore up the agency’s financing, putting it on a path to greater flexibility and capacity to fulfill its mandate as the directing and coordinating authority on international health work. WHO historically relied on voluntary and usually earmarked contributions from a small set of wealthy government and private donors. This limited WHO’s ability to fulfill its triple billion targets for universal health coverage and health emergency protections, address neglected areas of global health like injuries and noncommunicable disease, and otherwise keep the ship afloat through talent acquisition, retention, and pay. 

The 2022 decision included phased increases to member states’ assessed (i.e. mandatory, unrestricted) contributions to a total amount equal to 50% of the approved 2022 base budget by 2030 on a defined stepwise scale. The following year, WHO member states agreed to the first step: to raise their assessed contributions to 26% of WHO’s 2022-2023 base budget. This year, the agency is also seeking to raise an additional $7.1 billion in voluntary contributions in a replenishment conference based upon a compelling investment case to secure a stable workforce, reduce major gaps in health policy, and assume a central role in international health work. WHO smartly constructed and announced what it planned to do with these contributions upfront rather than requesting a blank check. It is also important that WHO’s member states lead the way, as private donors will want to see that WHO’s membership is fully committed. We proposed five strategies for WHO to stay on track with this fundraising and continue to maintain they are critical to the agency’s future.

Opportunities and Barriers to Sustainable and Adequate Financing

Adam Smith’s lament that “no complaint . . . is more common than that of a scarcity of money” is pertinent to this discussion. There is much to improve concerning pandemic readiness, but the already inadequate funding that was mobilized early in the decade is drying up while much of the public expresses an understandable desire to put the Covid crisis behind it. The problem is that viruses and other infectious agents do not particularly care. We can invest now in prevention or be compelled to spend orders of magnitude more later to cope with a pernicious threat that will cost lives and livelihoods.

The headwinds for financing new activities under the IHR and pandemic agreement are substantial. Global health financing is heavily fragmented and new mechanisms risk splintering already limited capital even more. The current cafeteria of choices includes U.N. agencies, funds, and programs (e.g., WHO, UNICEF, UNDP, UNAIDS), hosted trust funds (such as those within the development banks), and global public-private partnerships (Global Fund, GAIN, Gavi). Relatedly, capital is also required to fund universal health coverage, biomedical research, regulatory oversight, and public awareness campaigns. While there is some coordination among key actors (for example, WHO and UNICEF partner and coordinate with Gavi), they are also competitors for a limited global health till.

Moreover, the competition for donor government finance is incredibly intense, with climate change, humanitarian assistance, national security, and other priorities pining for funding. On top of all this is a growing nationalist populism, which is dead set against international institutions as a mode for solving common interest problems.

Public spending on pandemic measures is facing downward pressure and segments of the public have voiced displeasure on how previously appropriated funds were spent. Private finance tends to pursue return on investment, and the markets most in need of improved pandemic assistance are often the riskiest in which to invest. The strategies to generate capital to fund new obligations in the IHR and pandemic agreement must cope with the realities of fragmentation and competition, factors that have likely contributed to the resounding undercapitalization in the World Bank’s Pandemic Fund.

There was considerable anxiety in some quarters that amending the existing IHR while negotiating a new pandemic agreement would itself fragment efforts, and so the IHR and international negotiating body groups have coordinated some, but not all, of their discussions. Notably, on January 31, the two negotiating bodies met to discuss, among other things, “financing and key areas of overlap [because] a coordinated approach is needed to continue to ensure these important issues are properly reflected across the two processes.” They met again on February 23 to debate whether to consolidate financial mechanisms within the pandemic agreement. Assuming both instruments are adopted in May, the WHO should facilitate coordination between the mechanisms to prevent undue fragmentation and to maximize value for money.

Financing the Pandemic Agreement

A primary reason that many states have failed to build IHR health capacities is a lack of resources to do so. To address this problem, the draft text of the pandemic agreement calls on state parties to “prioritize . . . domestic funding;” “mobilize financial resources through all sources, including existing and new bilateral, subregional, regional and multilateral funding mechanisms” including through grants and concessional [i.e. sub-market rate] loans; promote “debt relief, including suspension of debt servicing and debt cancellation;” and “encourage governance and operating models of existing financing entities to minimize the burden on countries.” The March 2024 draft introduces obligations for states to cooperate by promoting financial assistance to lower-income countries for capacity-strengthening, but, like the IHR, provides no real obligation, detail, or benchmarking for that cooperation. It also requires the agreement’s governing body to “adopt, every five years a Financial and Implementation Strategy” and the parties to align with the strategy “while financing the relevant funding mechanisms, both within and outside WHO.”

What may capture the most interest is a new “Coordinating Financial Mechanism” to support implementation of both instruments and will consist of a “pooled fund to provide financing to support, strengthen and expand capacities” and “promote harmonization and coordination for financing” for pandemic prevention, preparedness, and response. It would also provide financing for day zero surge response “as necessary.” The mechanism will be accountable to the COP, which “shall periodically review [its] effectiveness.”

The funds would come from monetary contributions through the PABS system (if adopted and implemented) and voluntary contributions from state and nonstate actors, but the draft leaves additional sources of financing for the COP to determine.

The mechanism’s mandate to coordinate financing may be the most useful element, recognizing the fragmented state of global health financing. WHO is the only institution credibly positioned and constitutionally mandated to act as the directing and coordinating authority on international health work. By examining the sources of funding available for pandemic, prevention, preparedness, and response, it can provide the big picture of the state of financing.

The quintennial financial strategy review is prudent and appropriate. To make progress, the treaty’s governing body and secretariat will need to make reasonably reliable financial forecasts and identify needed funding for urgent activities. A five-year horizon is likely the longest possible to achieve specific targets; anything longer and countries and other actors may water down specific metrics into the aspirational language that international agreements are often criticized for employing. Moreover, pandemic priorities will change and so periodic opportunities to adjust them are practical.

To be effective, the pooled fund would need to be reliable and its revenue predictable and sustainable. As outlined, however, it risks creating another hand grasping at limited capital and a potentially visible point of failure and criticism. It is not clear why its funding targets will be met when so many others for global health have not. That it will rely heavily on a hotly debated PABS system for capital will make it more difficult to be viewed as a reliable purchaser or counterparty that could access favorable pricing for products or services.

Higher-income countries appear unwilling to commit to tangible financing through the main text of either instrument. Understandably, low- and middle-income countries demonstrate skepticism to agreeing to tangible commitments with assured funding elusive. It is hard to imagine that the pooled fund would be sufficiently capitalized or reliable to be the impetus for a breakthrough.

New Financing Mechanisms for the IHR

IHR financial negotiations have not significantly progressed. Yet, several proposals would expand the types of financial assistance available, including a new mechanism to support developing countries in strengthening core capacities and health systems, building research and development capacities, and addressing health inequities. As noted above, creating another mechanism is risky. If the negotiators elect to do it, WHO should coordinate it with an eye toward preventing fragmentation or reallocation from other critical health aims or its own core budget.

A Future Worth Investing In

Negotiators are now rapidly hurtling toward May’s formal adoption target while WHO continues to make its case to stakeholders. There is palpable urgency; the next pandemic may be waiting in the wings and right now humanity is woefully unprepared. A failure to meet the moment with strong commitments and mechanisms for adequate and sustainable financing would leave us on the back foot and would repeat Covid’s complicated and ethical challenges. Refusal of countries to commit the finances commensurate with their resources and capabilities would create extraordinary burdens on the most vulnerable and ultimately make responding to the next pandemic more expansive for all of us.

Kevin A. Klock, JD, is senior vice president, chief operating officer, and general counsel at the Foundation for the National Institutes of Health, a scholar at the O’Neill Institute for National and Global Health Law, and an adjunct professor at Georgetown University Law Center. @KlockStndTime

Alexandra Finch, LLB, LLM, is an associate at the O’Neill Institute for National and Global Health Law and an adjunct professor of Law at Georgetown University Law Center. @avgfinch

Lawrence O. Gostin, JD, LLD (Hon), is the founding O’Neill chair in Global Health Law and co-faculty director at the O’Neill Institute for National and Global Health Law, Distinguished University Professor at Georgetown University, and director of the WHO Collaborating Center on Global Health Law. He is a Hastings Center fellow. @LawrenceGostin

DISCLAIMER:

Professors Gostin and Klock lead the O’Neill Institute and Foundation for the National Institutes of Health (FNIH) project on an international instrument for pandemic prevention and preparedness. The FNIH provided funding to the O’Neill Institute for the project. Professor Gostin is the director of the WHO Collaborating Center on National and Global Health Law. Gostin is also a member of WHO’s IHR Review Committee. WHO is an intellectual non-financial partner to the FNIH-managed GeneConvene Global Collaborative. The views in this piece are those of the authors and do not necessarily reflect the views of the FNIH or O’Neill Institute for National and Global Health Law.

a brown mouse and a white mouse

Bioethics Forum Essay

Today’s Politics Threatens Tomorrow’s Reproductive Technologies

In mice, startling new ways to conceive are already real. 

In a landmark achievement in 2012, Japanese scientists turned cells from a mouse’s tail into viable eggs. These eggs were joined with donor sperm and implanted in a surrogate mouse, which birthed healthy pups. Some of these pups were able to reproduce normally. Those researchers have continued this research and, last year, they reported in Nature that this new method, called in vitro gametogenesis (IVG), produced an egg from a male mouse, leading to two male mice having offspring.

“IVG could be a game changer for women and men dealing with infertility, women of advanced maternal age, and same-sex couples, allowing them to have genetically related children they could not otherwise,” states a report on IVG recently released by The National Academies of Science, Engineering, and Medicine.

While scientists have not yet solved how to develop human eggs and sperm from skin cells, the research is progressing step by step. From a technical perspective, it’s plausible that within a decade, any two people may walk into a fertility clinic, have their cheeks swabbed, and leave as prospective parents. In a lab, their cells would be converted first into stem cells and then into sperm or eggs. These would be combined in a petri dish to form embryos, some of which the prospective parents would later choose to transfer for implantation. This could transform the lives of many couples who are not able to have genetic children because one of them does not have viable sperm or eggs, like those who struggle with infertility or gay and lesbian couples.

But science can’t change lives if people aren’t allowed to use it. As optimistic as some experts may be about the revolutionary potential of IVG, it’s hard to ignore the dissonance between our rapidly advancing science and our backsliding politics. The Alabama Supreme Court’s decision that frozen embryos are “children” in the context of wrongful death laws might lead to even more interference with parents who want to have real children. Eleven other states have similar fetal personhood laws that might also be used to prevent desperately wanted pregnancies.

Beyond repressing women’s rights, the personhood movements, emboldened by the overturning of Roe and the Alabama decision, threaten to stifle medical progress that could, for the first time in history, liberate future families from some biological constraints. Although legislative changes just signed by the Alabama governor now protect IVF providers from criminal prosecution, the state’s court decision illuminates an underlying hostility to women’s rights–and to the future of reproductive science. 

The Alabama case should be an alarm bell for those seeking new forms of assisted reproduction, methods like IVG, that would eliminate multiple burdens for women seeking help from science to conceive. Egg retrieval cycles would no longer be necessary, with their uncomfortable, costly, and risky hormone injections to hyperstimulate ovaries. IVG would also free women from the pressures of having children before age 35, the dreaded and arbitrary threshold for being deemed a “geriatric” mother whose supply of viable eggs is dwindling. If no biological clock were ticking, the choice of career versus motherhood would become less fraught. “Having it all” might become possible.

To be sure, IVG carries ethical considerations of its own. With the ability to create multiple embryos from easily obtained cell samples, the use of preimplantation genetic testing would become routine. This is already starting to happen. Two months ago, San Francisco company Orchid announced that it would offer whole genome sequencing of embryos ahead of IVF–a first in the U.S. fertility market.

While the company’s clinical validation was published as a preprint that has not yet been peer reviewed, a couple can pay $2,500 to get a readout of their embryos’ medical risks for genetic diseases. So far, Orchid and the other U.S. company that offers polygenic screening for embryos, Genomic Prediction, provide information on health risks only, but parents could access the data and seek out analyses of their embryos’ genetic predispositions for nonmedical traits as well, the thornier ones like intelligence and looks.

This trend represents the opposite of today’s political movement toward control of women’s bodies. Whole genome sequencing of embryos for IVF, and possibly someday for IVG, veers toward the other extreme of an unprecedented degree of information, choice, and freedom over reproductive outcomes. How much oversight or leeway parents should have in deciding about the characteristics of their future children remains uncharted territory.

Cultural norms can change in a generation. The first “test tube” baby was conceived in secrecy in 1978 by scientists who feared their work would be taboo–and who eventually won a Nobel Prize. Today, nearly 100,000 babies per year in the U.S. owe their lives to IVF. What we view as ethical in the realm of reproduction is sometimes a matter of what seems commonplace.

What will it be a generation from now: science-assisted births for parents of all ages and genders? Or forced births for women who don’t want children and prevented births for those who do? 

We can’t have that both ways.

Henry T. Greely, JD, is Professor of Law, professor by courtesy of Genetics, and Director of the Stanford Center for Law and the Biosciences at Stanford University, and author of The End of Sex and the Future of Human Reproduction. @HankGreelyLSJU

Kira Peikoff holds a graduate degree in bioethics from Columbia University and is the author of Baby X, a new thriller about IVG. @kirapeikoff

hands of someone receiving food at food pantry

Bioethics Forum Essay

A Thousand Double Binds: Alabama, Reproductive Freedom, and Child Health

As two people who have ties to Alabama and grew up in the Deep South, we are frustrated by the state’s ceaseless assault on reproductive freedom, while its politicians continue to ignore child health. Because Alabama lawmakers and its Supreme Court justices profess to care about children–and use this as a reason to restrict reproductive freedom–we believe there is a strong responsibility to aid kids who do not have consistent access to groceries or health care.

Alabama’s Supreme Court ruling on IVF is indicative of the state’s paradoxical interest in protecting embryos, while continuing to effectively ignore the health of children and families in the state. The decision  interpreted an Alabama statute, the Wrongful Death of a Minor Act, § 6-5-391, Ala. Code 1975, to confer personhood to embryos created outside of the biological womb. The opinion, authored by Associate Justice Jay Mitchell, argued that Alabama has long held that unborn children are “children” and stated that the Act “applies to all children, born and unborn, without limitation.” Following Alabama’s Supreme Court decision, lawmakers in several states are now considering passing fetal personhood bills. While Alabama’s governor signed a law protecting IVF,  problems with conferring full legal personhood on embryos, as well as the failing social safety net in Alabama, persist.

Immediately after the Dobbs decision, Alabama’s total abortion ban went into effect. The ban has no exceptions for rape or incest. Not only that, but Alabama’s state constitution specifically endorses anti-abortion language instead of being neutral on the subject or open to flexible interpretation.

Proponents of these reproductive care restrictions argue that they have been instituted for the well-being of children. However, child health, success, and well-being in Alabama are harmed by the state’s lack of social safety net services. Alabama was one of several states that chose not to expand Medicaid services, despite the federal government paying most of the cost of the expansion. Medicaid plays a vital role in ensuring that low-income families and children have access to healthcare.

One in four children in the state qualify as food insecure, meaning they lack regular access to nutritious food. Children facing food insecurity perform worse in school than their counterparts, often being years behind grade level learning expectations. Additionally, hunger makes children more susceptible to chronic illnesses that would be preventable with a proper diet. Even with these alarming statistics and effects, Alabama was one of 15 states that did not opt into a United States Department of Agriculture program, approved by Congress in 2022, that would provide extra money for food to children during the summer months when they do not receive subsidized school lunches.

Aside from disregarding federal funding initiatives seeking to promote the well-being of children, Alabama also continually falls short in caring for parents. Around 25 counties qualify as “maternity care deserts,” lacking the appropriate number of  obstetrician/gynecologists, certified nurse midwives, or medical facilities necessary to ensure that parents have access to the care that they need. This likely exacerbates Alabama’s already dismal maternal mortality rate. In 2020 the overall U.S. rate was 23.8 deaths per 100,000 live births; Alabama’s was 36.4 deaths per 100,000 live births. Furthermore, Alabama is ranked 50th in Temporary Aid to Needy Families Program (TANF) monthly maximum levels. Alabama’s TANF benefit for a family of three is just $215 monthly, which falls far below the national median of $492. For perspective, the USDA’s Cost of Food report indicates that it costs approximately $230 each month to feed a child aged 9-11.

Alabama’s record of health and social policy makes it clear: The state consistently refuses federal assistance to help pull its children out of poverty.

We hope that Alabama lawmakers consider child health more broadly, addressing the unacceptable rates of hunger and maternal mortality. While IVF is an important medical procedure, the technology is often only available to those who are relatively affluent or to people with employee-sponsored insurance. For those who are uninsured or on Medicaid, IVF remains out of reach, while other problems like food security and steady access to health care persist.

As we continue to witness attacks on reproductive freedom, we must remember the already deeply insufficient state of child health services in Alabama. Furthermore, we need to amplify and support the efforts of on-the-ground activists and organizers who are working tirelessly to make Alabama healthier and help it prioritize reproductive justice.

Anna Kutbay is a second-year student at Georgetown University Law Center interested in poverty law, health equity, and economic justice. linkedin.com/in/anna-kutbay/

Danielle M. Pacia, MBE, is a research associate at The Hastings Center. @DaniellePacia linkedin.com/in/daniellepacia/

Illustrative image for Fetal Personhood IVF and the Negligent Loss of Embryos

Bioethics Forum Essay

Fetal Personhood, IVF, and the Negligent Loss of Embryos

On February 16, the Supreme Court of Alabama held that two couples were eligible to recover damages for the loss of their frozen embryos. This was not the first time people have sued fertility clinics for negligence leading to the loss of their embryos–over 130 lawsuits have been filed since 2009–but it was the first decision since Dobbs overturned Roe v. Wade. Essentially, the decision said that since embryos are children/persons under Alabama law, and individuals have been able to recover damages for the loss of a fetus, they should also be able to recover for the loss of extracorporeal embryos. In the words of the majority, Alabama’s Wrongful Death of a Minor Act “applies to all children, born and unborn, without limitation. It is not the role of this Court to craft a new limitation based on our own view of what is or is not wise public policy. That is especially true where, as here, the People of this State have adopted a Constitutional amendment directly aimed at stopping courts from excluding ‘unborn life’ from legal protection.”

Soon after the ruling, three fertility clinics in Alabama suspended IVF treatment because of questions about the legal risks it posed to them. Following a national uproar over the implications for IVF and people who depend on it to start families, Alabama’s House and Senate  passed bills  on February 29 that would shield doctors, clinics, and hospitals from possible liability. A similar approach was taken by Republican lawmakers in Florida, who decided to pause their attempt to allow civil lawsuits over the wrongful death of a fetus after being warned by Democratic lawmakers and others that the bill amounts to “fetal personhood,” which could imperil doctors who assisted women in obtaining an abortion, as well as adversely affecting fertility treatments. 

Lost in the extensive media coverage that followed the Alabama Supreme Court ruling is the legal and ethical issue of wrongful death of a child, a fetus, or a frozen embryo. Wrongful death suits give legal redress to prospective parents who lose a child or potential child through medical negligence. It recognizes that their grief is real and deserving of compensation. However, wrongful death suits can only be brought for the death of a person and endowing embryos as persons or children threatens IVF. The problem is this: How can the legitimate concerns of fertility patients whose embryos are negligently lost be addressed without threatening the very existence of IVF?

One could be forgiven for thinking that the Alabama Supreme Court had endowed extracorporeal embryos with a new legal status–that of child or person. However, it was not the Court that endowed embryos with legal personhood in Alabama, but the Legislature. Moreover, the decision concerned the right of recovery in wrongful death suits, not the practice of IVF, and wrongful death suits give rights not to children but to parents who have suffered emotional harm from the loss of their child.

Some commentators made the misleading claim that the Court’s decision was based on a law dating from 1872, 100 years before the development of IVF. It is true that the Court held that embryos fell within the Wrongful Death Act of a Minor, but this was based on more recent judicial decisions (here and here) that expanded recovery to fetuses. Originally, wrongful death actions were limited to financial damages because their purpose was to compensate the victim’s survivors for their loss of income. This meant that there could be no recovery even for born children. This changed over the years, with the recognition that parents suffer emotional harm from the loss of a child and that the loss of a fetus, especially after viability, can be just as emotionally devastating to the prospective parents as the loss of a born child. (See, for example, Moen v. Hanson, 85 Wn.2d 5987, 537 P.2d 266 (1975).)

If couples who lose a fetus through medical negligence have a legal remedy, why not couples going through infertility treatment? Surely, their loss and grief should be recognized, and they should not be denied a legal remedy.

Understanding the legal context is crucial because success in a wrongful death suit depends on demonstrating that the death is the result of negligence. In the Alabama Supreme Court case, the evidence of negligence was overwhelming. A patient in the hospital managed to wander into the fertility clinic through an unsecured doorway and enter the facility where frozen embryos were stored. The patient removed several embryos and then dropped them on the floor, causing their deaths. If that isn’t negligence on the part of the clinic, I don’t know what is.

Allowing prospective parents to recover damages for the negligent loss of embryos does not, by itself, threaten IVF. There is no negligence when IVF is done with the informed consent of patients, in accord with prevailing medical standards. No negligence, no recovery for wrongful death. So, was the outcry from some providers and clinics an overreaction? The fear is that calling embryos children or persons endangers standard practices in that IVF routinely involves discarding frozen embryos.

The reason for the creation and discarding of surplus embryos in IVF is twofold. First, freezing extra embryos gives the individual or couple the best chance of a successful pregnancy, without multiple births, which are riskier for mother and babies, and without the need for additional cycles of egg retrieval, which impose significant physical burdens on the woman, as well as costs. Second, the creation of extra embryos enables the testing and discarding of embryos with chromosomal defects. Defective embryos are less likely to implant, so preimplantation testing improves the chances of a successful pregnancy, as well as preventing the birth of a child with a serious disabling condition.

Can these practices be justified if embryos are legal persons? How can it be legal to kill persons simply because they aren’t needed or have defects? One might reconcile the decision of the Alabama Supreme Court with IVF by keeping in mind that the decision applied only to recovery in wrongful death suits. However, the decision then went on for pages discussing the sanctity of life in specifically Christian terms of dubious legal relevance. That is legitimate cause for concern because it suggests that the aim was not simply to give a remedy to victims of negligence, but rather to impose a particular religious view of the status of embryos. Moreover, at times the decision strongly suggests that discarding embryos is forbidden. For example, Chief Justice Tom Parker wrote, “Even before birth, all human beings have the image of God, and their lives cannot be destroyed without effacing his glory.” Although this sentence is not strictly part of the Court’s opinion, but appears only in a concurring opinion, it is enough to create anxiety among fertility medicine practitioners, who wonder whether discarding embryos exposes them to civil or even criminal liability.

So, how should states treat the negligent loss of embryos? There are several options. One is to deny fertility patients any legal recourse, but that seems manifestly unjust. Another approach is to allow them to sue negligent providers and be compensated for the loss of their property. But this approach is also inadequate. It treats embryos like furniture, instead of potential children which have a significance and value that goes beyond that of mere objects or possessions. A third option is to endow embryos with the legal status of persons, but to restrict this to wrongful death suits. This was the approach of lawmakers in Alabama and Florida following the Alabama Supreme Court ruling.

Legally, there is nothing wrong with regarding embryos and fetuses as persons for the purpose of wrongful death suits, while not endowing them with that status in other areas of the law. However, recovery in wrongful death suits leaves some people scratching their heads. “You mean, if embryos are killed through negligence, that’s against the law, but it’s perfectly OK to kill embryos — that is, children — deliberately? How can that be?”

Fortunately, there is a better solution for compensating those who suffer the loss of their frozen embryos: the creation of a new tort of reproductive negligence. This approach, suggested by a few scholars (for example, Dov Fox, “Reproductive Negligence,”) would allow recovery for lost embryos due to negligence, but could also apply to the negligent or reckless destruction of frozen sperm or eggs, as well as medical negligence that renders individuals infertile. In all these cases, the harm is the deprivation of the ability to become a biological parent. Such a tort has the advantage of acknowledging that this loss is significant and deserves legal redress, without the risk of the personhood approach, which could deprive infertile people of the medical assistance they need to have children. Creating a new tort would be complex, but given the injustice of denying recovery completely, the inadequacy of treating frozen embryos, eggs, or sperm as mere property, and the dangers of the personhood approach, it seems to be the best solution.

Bonnie Steinbock, PhD, is professor emerita of philosophy at the University at Albany, State University of New York, and a Hastings Center fellow.