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.

doctor and patient holding hands on a desk

Bioethics Forum Essay

It’s Time to Change the Conversation About MAiD

In a recent commentary, physician Alan Astrow  expressed skepticism about the legalization of medical aid in dying.  He cited the subjectivity of determining whose suffering qualifies for medical assistance and concern that, given the painful American reality of unequal access to care, some vulnerable patients might be led, inappropriately or unwittingly, to MAiD. But these concerns neither stand up to evidence nor to my experience as a physician practicing in California before and after MAiD was legalized.

Ten states and the District of Columbia allow medical aid in dying and 18 more states have pending legislation to approve it. All the state laws are similar: they permit adults with terminal medical illnesses who are capable of making decisions to request legal prescriptions for aid-in-dying medication from a willing attending physician. Such patients must be able to ingest the drugs themselves. Twenty-two percent of Americans have legal access to MAiD today, largely because California is home to roughly one-eighth of the U.S. population.

For more than 20 years, Gallup polls have shown that the majority of the American public support MAiD. Surveys of American health professionals also show majority support. In a recent sample of nearly 600 Colorado physicians who routinely care for seriously ill adult patients, 88% indicated they would refer a qualifying patient who requested it for MAiD. Given what appear to be ineluctable U.S. trends toward state-by-state MAiD legalization, the time for professional debate about “whether to” is past, and that we should be focusing more on “who”—which patients should qualify?– and “how”—which practices should be permitted?

Support for legalized aid in dying is also growing in other countries. But the details of what, exactly, is legal varies from country to country. National attitudes and practices related to end of life are closely linked to the distinct histories, social environments, religions, cultures, and legal structures in those countries.

In Switzerland, for example, “assisted suicide” has been allowed since 1942, as long as the assistant is acting altruistically and not for “selfish” reasons. In 2006, the Swiss Federal Supreme Court recognized the right of an individual to decide how and when to end his or her life if the person faced “intolerable suffering” due to a chronic (though not necessarily imminently terminal) illness. The Swiss Academy of Medical Sciences has refined a set of guidelines for willing Swiss physicians, outlining how and when they can participate (by providing access to lethal prescriptions under specific circumstances). 

Canada recently liberalized its approach to MAiD. In 2015, the landmark Supreme Court Decision Carter v Canadaconcluded that criminal code provisions prohibiting MAiD represented an unconstitutional infringement on the personal freedoms and basic rights of all Canadians. In 2021, the Canadian Parliament passed Bill C-7, which removed the “reasonably foreseeable natural death” requirement from Canadian federal law and replaced it with “intolerable suffering” from “non-terminal grievous and irremediable medical conditions.”  That requirement was to have been extended to individuals with intolerable suffering due to some forms of grievous and irremediable mental illness in March. However, Canada decided to postpone this expansion, stating, “in its consultations with the provinces, territories, medical professionals, people with lived experience and other stakeholders, the Government of Canada has heard—and agrees—that the health system is not yet ready for this expansion.”

The “who” and “how” of aid in dying in Switzerland and Canada are very different from what they are in the U.S. The differences may come down to cultural beliefs and practices based on the histories of each country. It is hard to imagine, for example, the U.S. joining Canada in permitting aid in dying for grievous and irremediable mental illness. But some who disapprove of MAiD in the U.S. may point to Canada and Switzerland and see a “slippery slope” to a more expansive “who” and “how,” as well as to abuse.

Astrow expresses concern about MAiD legislation being considered in New York State. That bill is nearly identical to the laws in other states. A recent  extensively sourced essay in Voices in Bioethics urges New York legislators to pass the law, pointing to 27 years of data from states that legalized MAiD, beginning with Oregon, that show no evidence of abuse. The essay also includes reference to testimony before the New York State legislature by the bioethicist and NYU Professor Arthur Caplan, a long-time critic of MAiD legislation. In his testimony he asserts that his “slippery slope” concerns had been allayed by nearly three decades of actual evidence.

I am a psychiatrist and a palliative care physician who has worked for more than 40 years primarily with patients who have cancer. During the years before California passed its 2015 End-of-Life Options Act, two of my palliative care patients committed suicide with guns. Both were older white men with advanced cancer and less than six months to live; neither had known psychiatric illness. Both received excellent palliative care and state-of-the art symptom management, but this was not enough to prevent them from feeling that their current and foreseeable existence was unacceptable. Nor did they think that legal measures such as palliative sedation or voluntarily stopping of eating and drinking would be acceptable. I see those suicides as the worst possible outcomes. The patients died alone, and in a violent manner. In retrospect, I view their clinical trajectories as a form of patient abandonment by well-intentioned but legally hamstrung clinicians.

The End-of-Life Options Act was signed into law by Governor Jerry Brown. Given his Jesuit religious training and background, his signing statement is notable:

“In the end, I was left to reflect on what I would want in the face of my own death.

I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.” (underline added)

Soon after the bill was signed, Janet Napolitano, then president of the University of California, directed each of the UC Health Hospital Systems to craft policies and procedures to enact the law. Her position was in contrast to those of the predominantly Catholic faith-based health systems in California, which indicated their intention not to participate and to enjoin their professional staffs from doing so. I was part of the working group at UCLA that wrote local policy and have been involved since then as a mental health practitioner who evaluates UCLA patients who requested MAiD and who are referred by attendings or consultant physicians, as the law stipulates.

The California Department of Public Health publishes annual reports on the use of the End-of-Life Options law. The most recent report, which contains 2022 data, shows that 803 of the 1,270 Californians who were prescribed drugs that year ingested them and died. (Another 50 people died after taking drugs in 2022 that had been prescribed the previous year.) The 853 MAiD deaths in 2022 represented just 0.28% of the total number of deaths in California that year (308,015). California’s “use rate” –that is, the percent of patients with prescriptions who use them—is around 60%, consistent with use rates from other states where MAiD is legal, evidence that a significant minority of patients never ingest the lethal prescription.

Since the California law’s inception, 91% of patients who obtained prescriptions for MAiD had been receiving hospice and/or palliative care services (rebutting one of the arguments that inadequate access to palliation is a driver for MAiD). In 2022, the majority (66%) had advanced cancers, with cardiac and neurological diseases tied for the next most prevalent. Seventy-five percent of the patients were 70 years of age or older; men slightly outnumbered women (52% to 48%). Ninety-nine percent had health insurance. Forty-two percent had a bachelor’s degree or higher. Ninety-five percent identified as white or Asian, with Hispanic (2.8%) and Black (0.5%) patients vastly under-represented in relation to their percentages among California citizens at large.

Californians who are approved for MAiD look socio-demographically very much like those who use it in other states—older, whiter, wealthier, and more educated than the general populations there. Typically, such groups have better than average access to care of all kinds and enjoy greater personal health literacy and agency, evidence against the argument that more protections are needed or that disadvantaged individuals are being coerced into unwanted or misunderstood decisions to receive MAiD. Credible arguments have been made asserting that MAiD laws discriminate against disabled persons who want to take advantage of them because the laws exclude people with limited capacity for ingesting medication on their own or who have progressive diseases that make them unable to articulate their wishes. An important question is whether underrepresented, disabled, and/or socioeconomically disadvantaged groups are suffering from reduced access to MAiD? Or if in some circumstances they are expressing (as some have argued) greater religious objection or hesitancy about engaging with health care systems near the end of life?

Towards the end of his essay, Astrow asserts that “nothing in their [physicians’] training prepares them to judge whether a person’s life is no longer worth living.”  The implication is that a physician who participates in MAiD is making such a judgment. This is an oversimplification of what actually goes on between a patient requesting MAiD and the clinicians caring for her. The clinicians understand themselves to be supporting the patient’s thinking and choices about how much more of her imminently ending life is worth living. In addition, Astrow’s assertion demeans what MAiD represents to many individuals (and their families) who pursue it:  an embrace, celebration, and honoring of a life unavoidably near its ending, the preservation of the self against an unwanted but inevitable end.

Far be it from any physician to presume to judge the value of another’s life. But far be it from those of us willing to engage in this way to be prevented from honoring the wishes of imminently dying individuals to be free to choose a peaceful, legal, painless, and swift end.

Thomas B. Strouse, MD, is the Maddie Katz Professor and Vice-Chair for Clinical Affairs in the UCLA department of psychiatry.

Neuralink company image

Bioethics Forum Essay

The Neuralink Patient Behind the Musk

The sole virtue of Elon Musk’s report on X, formerly known as Twitter, of the first in-human brain implant by his company, Neuralink, is its brevity: “The first human received an implant from @Neuralink yesterday and is recovering well. Initial results show promising neuron spike detection.”

But, in this case, that virtue is very limited. Brevity is not so admirable in novel human research.

Opening up the brain of a living human being to insert a device, particularly someone with serious medical problems, deserves more than a two-sentence report on what is, in effect, a proprietary social media platform not distinguished for its reliability where facts are concerned. This human research subject, their family, all potential future research subjects and patients, the medical community, and all of us deserve more.

Assuming that some brain-computer interface device was indeed implanted in some patient with severe paralysis by some surgeons somewhere, it would be reasonable to expect some formal reporting about the details of an unprecedented experiment involving a vulnerable person. But unlike drug studies in which there are phases that must be registered in a public database, the Food and Drug Administration does not require reporting of early feasibility studies of devices. From a legal standpoint Musk’s company is in the clear, a fact that surely did not escape the tactical notice of his company’s lawyers.

Nevertheless, when they engaged in this medical intervention his company and the surgeons, neuroscientists, and nurses incurred certain moral responsibilities. A technical regulatory veil does not shield them from the ethical obligations of transparency to avoid the risk of giving false hope to countless thousands of people with serious neurological disabilities.

Many may not appreciate that “neuron spike detection” is only an acceptable preliminary endpoint for a carefully controlled experiment whose safety is far from established and could engender complications that would leave the human subject in a worse, if not life-threatening, condition. We are not even told what plans there are to remove the device if things go wrong or the subject simply wants to stop. Nor do we know the findings of animal research that justified beginning a first-in-human experiment at this time, especially since it is not lifesaving research. The company has denied that it mistreated primates in response to allegations of animal cruelty. Which scientists—who were not on the Neuralink payroll—decided that the research was ready to try in humans?

This episode reaches beyond one incident. Science by press release, while increasingly common, is not science. When the person paying for a human experiment with a huge financial stake in the outcome is the sole source of information, basic ethical standards have not been met.

Arthur Caplan, PhD, is the founding head of the Division of Medical Ethics at NYU Grossman School of Medicine. He is a Hastings Center fellow and a member of The Hastings Center’s advisory council. @ArthurCaplan

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

SpongeBob Squarepants and other cartoon characters

Bioethics Forum Essay

SpongeBob, Slime, and Brain Injuries: A Dangerous Combination for Kids

For the first time, this year’s Super Bowl will have an alternate telecast. The target audience is children: the NFL has teamed up with CBS and Nickelodeon on a broadcast presented by beloved cartoon characters, notably the cast of SpongeBob SquarePants and Dora the Explorer. The Teenage Mutant Ninja Turtles, Plankton, and undersea augmented reality jellyfish will also make appearances. To the NFL, bringing this kid-friendly approach to tackle football to a large audience of children is a cause for celebration. “Our previous telecasts on Nickelodeon have been huge hits and created a new and different way to experience an NFL game,” said NFL media executive vice president Hans Schroeder in a statement. “We’re excited to bring that creativity to Super Bowl 58 and give our fans another way to enjoy one of the world’s most popular sporting events.”

But as public health researchers, we are alarmed by efforts to promote the full-body collisions of tackle football to young children with animated mascots, enhanced augmented reality, bright colors, 3D iconography, and other child-friendly symbols. These broadcasts minimize the health hazards of tackling, particularly the dangers of brain injuries. Moreover, young children do not have the cognitive ability to understand or evaluate the risks.

With increasing research on the long-term effects of brain injuries, youth sports organizations have implemented concussion protocols and return-to-play guidelines to protect children from repeated head impacts. Public health agencies have developed training courses to help coaches, trainers, and others involved in youth sports learn how to recognize and respond to concussions. But at a time when we know how important it is to teach everybody involved in youth sports to take brain injuries seriously, these Nickelodeon broadcasts do just the opposite.

Perhaps most egregiously, in 2021, one NFL Playoffs on Nickelodeon announcer told child viewers that the forceful head collision they had just seen on TV was just like scraping their knees during recess. “You get banged up; you get back up, and you go out there and play another down.” Directly instructing children to keep on playing after hitting their heads and getting “banged up” is precisely the opposite of what they should do: stop playing and tell a grown-up so they can get checked out. As Chris Nowinski of the Concussion Legacy Foundation said, “The NFL Nickelodeon broadcast sent an incredibly dangerous message to children on what to do after hitting their head; this advice has literally gotten children killed.”

Even when announcers aren’t telling children that they can ignore brain injuries, the animations involved in these Nickelodeon broadcasts implicitly send the same dangerous message. The funny sound effects, vibrant colors, and entertaining animations that appear when players collide or hit the ground all combine to convey the impression that these hits are amusing and harmless. Superimposing these appealing graphics on real-life collisions is inherently deceptive to young children.

When it comes to other health risks, we’ve recognized the importance of protecting children from misleading messages about public health hazards. Perhaps most famously, in 1997, the Federal Trade Commission charged tobacco company R. J. Reynolds with violating federal law by using a cartoon character, Joe Camel, to appeal to children under age 18. This led tobacco companies to cease using Joe Camel and other similar cartoon mascots in their cigarette advertising campaigns. Disney has placed restrictions on advertisements for junk food aimed at children. And although numerous loopholes still need to be addressed, the food and beverage industry’s Children’s Food and Advertising Initiative (CFBAI) is similarly intended to place limits on the marketing of unhealthy foods to young viewers. In fact, young children under age 8 are so vulnerable to marketing that an American Psychological Association task force advised restricting all television advertising during programming targeted toward this age group.

Yet no such restrictions are in place on how the NFL and Nickelodeon portray the repeated, full-body collisions of tackle football. Given our knowledge of the health hazards of brain trauma, particularly for developing brains, regulations must be set up to prevent the celebration or “cartoonizing” of the most dangerous impacts. Programming for young children should not include slime and dancing animations when players hit the ground or each other, or any other scenarios that place athletes at high risk of brain injury from impact.

The NFL should consult with health professionals to create guidelines that prevent the misrepresentation of brain injury risks in all broadcasts aimed at children, including both visual depictions and how announcers call the plays. No football broadcasts, let alone programs targeting young children, should describe hits to the head as a minor injury that players can simply “bounce back” from.

And if CBS, Nickelodeon, and the NFL want to promote kid-centered football, they should take the lead in celebrating the excitement and fun of flag football. The NFL has begun to host flag football championships at Pro Bowl games and has developed several initiatives to encourage flag football among youth. The NFL could build on these efforts and collaborate on applying state-of-the-art graphics to flag football in its telecasts aimed at kids. When developing programming for young children, media broadcasters should emphasize noncollision sports and stop glorifying high-risk collisions that place athletes at risk for brain trauma. That would be a win for public health.

Kathleen Bachynski, PhD, MPH, is an assistant professor of public health at Muhlenberg College and author of No Game for Boys to Play: The History of Youth Football and the Origins of a Public Health Crisis. She is a volunteer member of the professional advisory board of Pink Concussions, a nonprofit organization that advocates for more research on concussions among girls and women. LinkedIn: Kathleen Bachynski ba

Asher Clissold is a Master’s of Public Health student at Boston University School of Public Health who has researched and presented on the NFL’s marketing of football to youth. LinkedIn: Asher Clissold  

prison bars in the dark

Bioethics Forum Essay

Considering the Duality of Nitrogen

Nitrogen gas makes up 78% of the air on planet Earth. Nitrogen is key in nucleotides, the individual units of our genetic material. Nitrogen is also contained in all proteins, which are what we see when we look at the form of another (unclothed) human. Nitrogen in soil is essential for the crops that feed humans and animals. Liquid nitrogen enables biological samples to be stored. Measurement of blood urea nitrogen is a fundamental indicator of renal function. And, on January 25, nitrogen gas was used for the first time to execute a prisoner on death row.   

The execution of Kenneth Smith does not answer the many questions raised by this new means of capital punishment. Is it “perhaps the most humane method” of execution,” as the Alabama attorney general has claimed? Or is it cruel and unusual punishment, as Smith’s attorneys and others have argued? Answering these questions is of vital importance, since nitrogen gas has been approved by three states for capital punishment.

While nitrogen is at least as old as our planet, the industrial and agricultural revolutions increased our reliance on it. German chemist Fritz Haber received the 1918 Nobel Prize in chemistry for his development of the Haber-Bosch process, a reaction which, for the first-time, produced ammonia at scale from atmospheric nitrogen and hydrogen. Among other uses, the ammonia from this process enabled mass production of the fertilizers essential for the agricultural growth required to feed the fourfold increase in human population over the past century.

 Despite Haber’s tremendous contribution to the science of chemistry, his legacy is deeply tarnished, as  he was also an architect of the use of chlorine, mustard and phosgene gases in World War I in violation of the Hague Conventions of 1899 and 1907. His research enabled production of Zyklon-B, the gas used to execute millions in the Nazi death camps of World War II. These connections make the use of nitrogen gas in capital punishment in 2024 all the more macabre.

The American Medical Association’s code of ethics on capital punishment states, “A physician, as a member of a profession dedicated to preserving life when there is hope of doing so, should not be a participant in a legally authorized execution.”

In a 2018 amicus brief to the U.S. Supreme Court, the AMA was more emphatic in its condemnation of capital punishment and physicians’ participation in it: “What people much prefer is a way to accomplish the deed while believing there is something humane about it. Society wants to delude itself into a belief that capital punishment no longer represents a weighted moral choice but is now somehow scientific—nearly antiseptic. This delusion, however, cheapens life and makes its extinction easier. The medical profession, whose ‘essential quality’ is an interest in humanity, and which reveres human life, should have no part in this charade.”

While laudable, one wonders if the AMA’s broad view that the medical profession should “have no part in this charade” may have an unintended effect–preventing physicians from speaking out against questionable capital punishment methods? Does fully respecting the AMA’s guidance require professionals to keep their knowledge of physiology, ethics, and history to themselves? An unfortunate consequence of physicians’ silence is that attorneys and legislators have taken the microphone and promulgated methods of execution, including nitrogen gas, that many consider to be inhumane.

If the process for medical and ethical vetting of any new execution methods before they become legal is unclear or nonexistent, and legislators and bureaucrats are the final decision-makers on such matters, then civil society should be concerned.

Witnesses to the execution, including journalists and Smith’s spiritual adviser, have said that nothing about it supported the Alabama Attorney General’s blithe predictions about the humanity of the method. Organizations around the world criticized the execution, including the United Nations High Commissioner for Human Rights, the European Union, and Amnesty International. The White House found reports of the execution “deeply troubling.”

We as a society have a choice about whether to restore the use of nitrogen exclusively for good or not—to overlook the long-ago disgraced uses of nitrogen gas for chemical warfare and genocide and accept it as a means for execution today. We must carefully consider the risks of moral backsliding to a time when gas poisoning was conducted by state actors. The consequences are easy to see. But unless nitrogen gas for executions is challenged on constitutional grounds as cruel and unusual punishment, it can be used again in Alabama, Oklahoma, and Mississippi. Indeed, since Alabama’s attorney general has said he intends to continue using it and would help other states interested in doing so, now is the time for the AMA, the American College of Correctional Physicians, bioethicists, and others to challenge this method.

No one knew precisely what would happen when Smith was restrained on a gurney and nitrogen gas was released into the tubing-and-mask circuit sealed to his face. Today, that knowledge comes at an enormous moral cost. As a society, we must ask ourselves what else was released into the circuit of civil society? And are we willing to restore what was lost on January 25, 2024?

The number of moral questions to be asked would be far fewer if the black-topped nitrogen tank had simply remained sealed.

Rafael Escandon, DrPH, PhD, MPH, HEC-C, is a consultant in research ethics and clinical R&D to the biotechnology industry in Bainbridge Island, Wash.