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Bioethics Forum Essay

Unresolved Grief is Eating Away at Us

by Katherine WassonPublished January 11, 2024Posted in Hastings Bioethics Forum

The start of a new year is a time for reflection. In most ways, 2023 was a return to normal. Schools were fully back in person; hybrid work was old hat; travel rebounded; and people ate in restaurants and went out to the movies and plays. One could be forgiven for thinking that the greatest pandemic of our lifetime had not even happened. Yet, I see people easily agitated and stressed, and nerves frayed. These behaviors show up in social interactions, on the road, and on social media. I think in our desire to regain a sense of normalcy we have not grieved properly for the losses and hardships of the past four years.

Grief is “the anguish experienced after significant loss, usually the death of a beloved person,” according to the American Psychological Association. It can present in response to any event that disrupts or challenges our sense of normalcy or ourselves. Natural disasters, wars, and pandemics involve collective grief, loss experienced by a group, and traumatic grief is a response to loss that takes place under horrific and unpredictable circumstances. Grief is typically followed by a period of mourning. Avoiding this stage can lead to complicated grief, a disorder characterized by long-lasting, painful emotions and difficulty recovering from the loss. I think our collective, traumatic, and unresolved grief is seeping out in unhelpful and unhealthy ways. If we do not tend to it, it could affect us for years to come.

Elizabeth Kubler-Ross is famous for identifying five stages of grief: denial, anger, bargaining, depression, and acceptance. These stages don’t necessarily happen in this order, and I think as a society we are stuck in the anger stage. We experienced denial in the beginning of the pandemic and definitely depression during lockdown and beyond as mental health issues remain at higher levels than pre-pandemic. There may well have been lots of bargaining going on too, e.g. “If I don’t go to this social gathering, I can go to the next one safely.” We have lost so much. We lost the world as we knew it. We lost a sense of predictability in life and some degree of optimism about the future. We lost loved ones and colleagues; children lost educational, social, and emotional development. Many Americans lost trust in our leaders and experts.

Early in the pandemic, there was attention to those lost. The news media tracked the Covid deaths daily. Now, these deaths rarely make the news.

What we have lost needs to be acknowledged to process our grief and move toward acceptance, a process that will be uncomfortable, if not painful, for a while. There are many ways this can happen. Nationally, we could identify a day of remembrance for the over 1 million lives lost to the pandemic in the United States alone. States and local communities could join in and add their own services. The only such service we’ve had was attended by President Joe Biden on the eve of his inauguration in January 2021.

Churches, synagogues, and mosques could hold special services for their members annually helping to personalize the mourning within that community. It would also be worthwhile for individual institutions and employers to acknowledge their losses, recognizing the individuals who were known to them and who are missed. The health care profession, of course, was hit particularly hard.

Beyond acknowledging our losses, schools and parents need to help children understand their emotions and process them. Local communities, perhaps through the libraries or other civic and nonprofit organizations, could offer times and places for their members to share their experiences over the past few years. Ignoring what we have lost isn’t working. Waiting for the anger and frustration to dissipate isn’t wise. Only when we face our losses and the toll they have taken and grieve can we truly move on.

Katherine Wasson, PhD, MPH, HEC-C, is a professor in the Neiswanger Institute for Bioethics at Loyola University Chicago.

Bioethics Forum Essay

Balancing a Patient’s Autonomy Against Misinformation

by Daniel Edward CalliesPublished January 8, 2024January 9, 2024Posted in Clinical Ethics Case Studies, Hastings Bioethics Forum

Case Narrative

Ms. J, a 45-year-old mother of three, was admitted to the emergency department with significant shortness of breath. With her children by her side, she relayed that she had tested positive for Covid 10 days prior and had not been vaccinated. Having done her own research, she had been self-medicating at home with vitamins. At the hospital she was found to have Covid pneumonia and very low blood oxygen, and was started on a high-flow nasal cannula delivering oxygen at the maximum rate of 60 liters per minute. Her blood oxygen remained low, however, and she was transferred to the intensive care unit to be put on a ventilator. The team reported that, with ventilator support, Ms. J would have a 50% chance of making a full recovery, and that without it she would almost certainly die. That notwithstanding, Ms. J declined to consent to the ventilator.

She explained that, from the various articles she had read, ventilators did not work for Covid, and said she had heard that hospitals were only putting Covid patients on ventilators in order to receive significant remuneration from the federal government. She wanted to leave the hospital immediately to get vitamins that she thought would relieve her shortness of breath. Both the attending physician and the nursing staff were distressed. They reported that, if Ms. J were to remove the nasal cannula and leave the hospital, she would very likely die before making it to the parking lot. But Ms. J was unwavering – she did not believe she was at risk of death by leaving the hospital and she was minutes away from walking out. The team called an ethics consult to help them think through the dilemma between respecting Ms. J’s preference and protecting her from grave harm in the context of false beliefs.

Ethical Analysis and Process

Under normal circumstances, the ethics team would have met with the treating team, the patient, and perhaps the patient’s family with the aim of facilitating consensus among the parties. But there wasn’t time to arrange meetings. Ms. J’s situation was emergent, and the treating team felt that the need for ventilator support was imminent. So, the ethics team spoke to the treating team by phone.

The focus of the phone call was on Ms. J’s capacity to decline treatment. It was acknowledged that patients have the right to refuse any and all treatments, even life-sustaining treatments. However, before honoring a patient’s decision to decline important medical treatment, health care providers have an obligation to assess the patient’s decision-making capacity. While denying someone with decisional capacity the right to guide their own health care is clearly unethical, failing to protect someone without decisional capacity from a harmful choice is a moral failing, as well. The ethics team outlined that patients with decision-making capacity are able to: (1) communicate a clear choice, (2) demonstrate understanding of their medical condition, (3) appreciate their clinical situation and the benefits and burdens of treatment (as well as of forgoing treatment), and (4) reason through the decision, applying the relevant medical information to their values and interests. Importantly, the ethics team also explained that when the decision is particularly consequential (e.g., there is a high risk of avoidable death without treatment), the threshold for a patient being judged as having demonstrated capacity is commensurately high.

The medical team explained that Ms. J was certainly able to communicate a clear choice. She also seemed to understand what the treating team was telling her, and she was able to demonstrate some reasoning as to why she wanted to leave the hospital and why she was refusing to be put on a ventilator. Rather than focusing on her understanding or her reasoning, the ethics team called attention to whether Ms. J was demonstrating sufficient appreciation of her clinical condition and the likely consequences of declining treatment. Ms. J was not merely in disbelief about the likelihood of death should she forgo ventilation; she was in disbelief about the possibility of such an adverse outcome. In short, her false beliefs about her disease meant she was unable to demonstrate sufficient appreciation of the likely consequences of forgoing treatment. The clinical ethicists reminded the treating team that each of the four abilities is necessary for capable decision-making. If there was significant doubt about Ms. J’s capacity, the ethicists said, the treating team should err on the side of caution: judge her to lack capacity and encourage her to identify a surrogate decision-maker (e.g., one of her adult children) to help with treatment decisions.

The Decision

The treating team informed Ms. J of their concerns about her decision-making capacity given the dire consequences of forgoing ventilation, and they asked if they could turn to one of her children to help with the decision. Fortunately, Ms. J identified one of her adult daughters as her surrogate. Her daughter provided consent and was even able to persuade Ms. J that her life depended upon remaining in the hospital and receiving ventilator support. Even more fortunately, the treatment was successful. Ms. J left the ICU a week later and was discharged from the hospital soon after.

Lingering Questions

Despite the auspicious outcome of this case, it raises three challenges. First, shouldn’t the medical team have respected Ms. J’s autonomy and let her make her own decision, even if, in the team’s professional judgement, her decision was a bad one? Again, if Ms. J had demonstrated sufficient decision-making capacity—based on the four abilities outlined above—then, yes. Patients demonstrating capacity get to make their own treatment decisions, even decisions that go against medical judgement and are life-threatening. But when patients fail to appreciate the likely outcomes of their decisions and instead have false beliefs about the consequences of forgoing treatment, they lack decision-making capacity. Respecting the preference of a patient without sufficient capacity does not necessarily respect their autonomy, but instead could potentially constitute a failure to act in their best interest.

Second, it was fortunate that Ms. J’s daughter was able to persuade her mother to accept treatment. But what if she hadn’t been able to do so? When a patient who declines treatment lacks capacity, it doesn’t necessarily follow that treatment should be provided over the patient’s objection. The potential benefits of a treatment must always be weighed against the burdens of the treatment. And, when treatment is provided over a patient’s objection, the benefit should be especially strong, given the significant psychological and emotional harms often associated with involuntary treatment. If Ms. J had not been persuaded, the treating team and her daughter would have had to decide whether treatment, all things considered, was in Ms. J’s overall best interest.

Lastly, what should the team have done if Ms. J’s daughter had the same mistaken beliefs and incredulity about her mother’s dire prognosis? What if her entire family shared those beliefs? What about when those beliefs are widespread? Given the extent of misinformation about Covid treatment, it’s not unreasonable to assume that a significant minority of the U.S. population held beliefs similar to Ms. J’s and that these beliefs may have had a political etiology. Does this mean that a significant minority of the population would lack decision-making capacity if they found themselves in Ms. J’s situation?

There is no well-worked out theory of incredulity and its relationship to capacity. And there are certainly differences between false beliefs, conspiracy theories, and delusions. That notwithstanding, it is important to note that not all false beliefs undermine capable decision-making. Believing that the Earth is flat, for example, does not undermine a patient’s capacity to decide between life-saving treatment and leaving the hospital against medical advice. But when a patient has false beliefs that are pertinent to the decision at hand–for instance, a belief that their illness is not severe and can be remedied with vitamins–these false beliefs can undermine their capacity to make decisions in line with their own conception of the good, about what makes a life worthwhile. Just as incredulity about a diagnosis can prevent patients from making capable decisions about treatment, incredulity about the likely consequences of a decision can lead to a judgement of incapacity.

Daniel Edward Callies, PhD is a clinical ethicist and the ethics program manager for the University of California, San Diego Health System.

Series Editors’ Comment: Considering Humility and Trustworthiness

Honoring patient autonomy cannot be done in a vacuum. Autonomy is relational insofar as it depends on the sharing of information and the ability to work through complicated decisions with others. But the choices we make are molded by social norms, beliefs, and values. This is why the process of eliciting a patient’s values and expertise, sharing relevant clinical knowledge, and, ultimately, supporting the patient in choosing the best pathway forward for them cannot be abstracted from ordinary, deep-seated norms, beliefs, and, importantly, imbalances of power. While health care professionals are trained experts in clinical care, their power to adjudicate truth and falsity of individual beliefs is necessarily limited.

Ms. J’s case demonstrates the importance of balancing respect for autonomy and harm prevention, but also the important virtues of humility and trustworthiness. As many patients know, health care is an imperfect science and health care providers sometimes get it wrong. This complicates their efforts to assess a patient’s capacity based on appreciation of consequences and reasoning about options, especially when assessment of decision-making capacity can be weaponized to justify acting over a patient’s stated objections.

While Callies rightly relies on the gravity of the harm (likely death) and the patient’s lack of appreciation that she might die, health care professionals should question what appreciation means in the context of opposing sociopolitical values and related beliefs. There are broader harms—experienced and witnessed during the Covid pandemic—that result from behaviors that create and perpetuate distrust. Acting over a patient’s objections—even if justified by nonmaleficence for a patient without decision-making capacity—has consequences that can reverberate in families and communities. How should these moral harms be weighed? This is a powerful question that cannot be answered by health care professionals alone.

Ethics consultants can help health care professionals appreciate the importance of this question and work with all engaged parties to determine who has the authority to answer it definitively in a given case. Yet, the question will always recur, as will other moral questions essential to the practice of medicine, each time providing another opportunity to situate the meaning of health care within the context of its practice.

Trust and distrust arise in case-by-case enactments of power and authority in everyday health care practice. The authority that trained health care professionals have over shaping clinical conversations carries a risk of harm: in attempting to focus on medical facts, health care professionals may circumvent open speech and, in the process, sow distrust and convey bias.

This is the heart of the moral dilemma posed by the case of Ms. J. It is right to question whether honoring choices tied to reasons that are personal, even political–and are disputed by many health care experts–could serve to build patient or community trust and support broader community benefit, even if honoring those choices means risking a patient’s life. At the same time, the death of such a patient risks increasing distrust in the capacity of health care professionals to save the lives of patients who are vulnerable to the harms of the politicization of medical facts.

Ultimately, ethics consultants can support serious consideration of patients’ voices and rights, while simultaneously building trust and minimizing harm, by helping health care professionals align medical care with the values conveyed by their patients. After assessing a patient’s capacity to make decisions, with close attention to possible biases at play and holistic consideration of the severity of the risks to the patient, ethics consultants may sometimes conclude that life-saving therapy cannot be provided over a patient’s objection. These decisions should always be recognized as uncertain and made with humility.

– Georgina Campelia and Thomas Cunningham

Learn more about the series, Clinical Ethics Case Studies for Hastings Bioethics Forum.

Read the previous essays in the series here, here, and here.

Attention clinical ethicists: learn how to contribute to the series.

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Bioethics Forum Essay

Cold Comfort for Texas Obstetricians

by Ellen Wright ClaytonPublished January 2, 2024January 5, 2024Posted in Abortion, Hastings Bioethics Forum

In an essay about the recent Texas Supreme Court decision on abortion, John Lantos was correct in stating that the justices refused to issue an order protecting Dr. Damla Karsan and her patient, Kate Cox, whose fetus had trisomy 18, “from prosecution under [Texas’] abortion-banning law,” noting especially that Texas does not permit abortion for lethal fetal anomalies. In their opinion, although the justices wrote that “the pleadings state that Ms. Cox’s doctor—Dr. Damla Karsan—believes Ms. Cox qualifies for an abortion based on the medical-necessity exception,” they held that the doctor’s good faith belief that the statutory requirements had been met did not suffice because Dr. Karsan did not explicitly say that, in her “reasonable medical judgment,” her patient had “a life-threatening physical condition aggravated by, caused by, or arising from a pregnancy that places the female at risk of death or poses a serious risk of substantial impairment of a major bodily function unless the abortion is performed or induced.” [TEX. HEALTH & SAFETY CODE § 170A.002(b)(2)]

As a result, the justices refused to “pre-authorize the abortion.”

Yet, Lantos was misguided in suggesting that the remainder of the opinion offers a path forward if only physicians would exercise “reasonable medical judgment” that their patients faced the statutory level of harm. It may seem reassuring that these justices sought to provide “some clarity,” writing that “[t]he law leaves to physicians—not judges—both the discretion and the responsibility to exercise their reasonable medical judgment, given the unique facts and circumstances of each patient.” (emphasis original) In fact, the justices specifically declined to say any more about what constitutes “reasonable medical judgment.” They did say that women need not be on the brink of death before abortion is permissible. This formal deference to physicians may reflect in part courts’ general reluctance to give prior approval to physicians since the court here stated three times in its opinion that women need not obtain court orders prior to having a qualifying abortion.

The first problem with Lantos’s analysis is that having decided the main issue in the case – whether Kate Cox’s abortion could proceed — all the language that followed was mere dicta, nonbinding statements of limited precedential value. The justices were not promising that an exception would automatically be available when, in a physician’s “reasonable medical judgment,” the woman’s health was at serious risk. Certainly, simply saying the magic words would not suffice to confer immunity, especially since the opinion later said that “[a]n exercise of reasonable medical judgment does not mean that every doctor would reach the same conclusion.” One wonders whether these justices would have discounted Dr. Karman’s words even had she used the statutory language in her attestation.

The justices’ suggestion that the Texas Medical Board could choose to provide more guidance fails to recognize that the board has rarely provided definitive guidance about the standard of care in any aspect of medical practice. When the board does address what physicians should do in certain practice areas, it typically focuses on procedural issues, often specifying that it did not intend to preclude consideration of other sources of authority on how clinicians should care for patients. Nor should it be reassuring to clinicians seeking to care for their sick pregnant patients that all members of the board are appointed by the governor and are represented by the Texas attorney general.

And there is at least one more problem. The opinion in this case was decided by only three justices of the Texas Supreme Court (out of nine) and issued per curiam (without identifying who wrote it) after necessarily rapid briefing given the immediacy of the case. The decision of these justices to address “reasonable medical judgment” at some length is particularly puzzling since, two weeks earlier, on November 28, 2023, the entire Texas Supreme Court had heard oral arguments in the case of Zurawski v. Texas No. 23-0629. In that case, the trial court, after hearing extensive testimony from women who said they had been harmed by “the widespread uncertainty of physicians’ level of discretion under the scope of Texas medical exception provision,” enjoined “abortion bans in any manner that: (i) would prevent the Patient Plaintiffs and pregnant persons throughout Texas from receiving necessary abortion care in connection with an emergent medical condition; (ii) would subject the Physician Plaintiffs and others in Texas to liability for providing necessary abortion care in connection with an emergent medical condition; and (iii) would be inconsistent with the rights of pregnant persons and physicians in Texas under Article I, §§ 3, 3a, and/or 19 of the Texas Constitution . . . .”

The injunction never went into effect because the Texas attorney general appealed it the same day. It is almost as if the three justices, by their dicta in denying the Coxes’ and Dr. Karsan’s request for a protective order, were attempting to preempt the deliberations of the entire Texas Supreme Court in Zurawski.

Most troubling of all, physicians’ decisions are always subject to being second-guessed by prosecutors, trial courts, expert witnesses, and juries. Nothing prevents a prosecutor from bringing charges, and juries have enormous discretion in weighing evidence. If this is the path forward for physicians, it is characterized by rocks, IEDs, chasms, and steep drop-offs.

So, my advice is to be cautious, be very cautious, of the dire uncertainty that remains.

Ellen Wright Clayton, JD, MD, is the Craig-Weaver Chair in Pediatrics, core faculty of the Center for Biomedical Ethics and Society, and a professor of law at Vanderbilt University. She is a Hastings Center fellow.

Bioethics Forum Essay

This Wasn’t the Plan: A Family Caregiver’s Recommended Readings from 2023

by Nancy BerlingerPublished December 18, 2023December 19, 2023Posted in Aging, Hastings Bioethics Forum

Work and life overlapped significantly for me in 2023. The timeframe for the latest project in the Bioethics for Aging Societies portfolio—a Greenwall Foundation-funded analysis of ways to support aging through housing—coincided with changes in my 89-year-old mother’s health that by year’s end resulted in a change in her housing. As my mother says, no one “plans” to move to assisted living as an aspiration. Something happens. A fall, a stroke, the accrual of age-associated conditions within one life, or within a couple’s life. And so, life changes, yet again. I am reading reports and articles about aging and caregiving with a sharper perspective, reality-checking, looking for my mother, and for myself, in the stats and stories. Here’s a round-up of good reads from 2023.

An excellent New York Times/KFF Health News series with the less-than-cheerful title Dying Broke catalogs how impossible it is for many Americans to “plan” for a financially secure old age. The “choices” available to people who need care heavily depend on ability to pay for “options” outside the Medicare health insurance system for older Americans. This series makes admirably clear that in America, when we say “care,” this usually means family caregivers. That society in which people care for their elders? That’s this society, for better or worse. As the thousands of reader comments on this series make clear, what is missing from American society is a coherent and equitable system for financing care, comparable to Medicare and meeting the foreseeable needs of an aging population.

A report on financial longevity, from the University of Pennsylvania’s New Courtland Center for Transitions and Health in collaboration with the TIAA Institute, avoids the trap of reducing population aging to a personal or family problem and advising caregivers to “take care of themselves.” (Disclosure: I have written with New Courtland director Mary Naylor, a co-author of this report.) The authors present the useful concept of “financial caregiving,” reflecting data showing that nearly all family caregivers provide financial support or manage finances on behalf of the person they are caring for. The report’s recommendations in response to this intergenerational reality are targeted to employers and financial advisors of current and future caregivers. Employers are encouraged to offer flexible work, remote work, and paid family leave as part of standard benefits, given that 60% of family caregivers are employed. Financial advisors are encouraged to shift from “retirement” planning to “longevity” planning, talking more directly with clients about how population aging (longer lives and smaller families/future caregivers) affects them. The report also notes that the financial costs borne by family caregivers as a percentage of income are significantly higher among Black and Hispanic/Latino family caregivers, with implications for their financial security.

The slide-format infographics summarizing this report are especially helpful, and the limited use of cutesy phrases such as “sandwich generation” is refreshing. Caregiving is serious work. The renegotiation of self-determination as a shared project, involving the delegation of activities such as paying one’s own bills or doing one’s own taxes, involves mutual learning, patience, respect, and trust. For more on financial caregiving in the context of dementia, see this 2023 study from University of Michigan investigators, which analyzes how the incremental changes associated with this disease translate into increased care needs and out-of-pocket care costs.

My research colleague Jennifer Molinsky, who directs the Housing an Aging Society program at the Harvard-based Joint Center for Housing Studies, produces a crucial semiannual report on housing America’s older adults. (The link includes the full report, charts, data sources, and other tools.) In a post summarizing insights from the 2023 report, Molinsky explains how population aging intersects with the shortage of affordable housing in the U.S., and how the housing needs of older adults include–and go beyond–affordability.

In the next decade, people over 80 will become the fastest growing segment of the U.S. population. Due to age-associated health conditions and limits on mobility, people over 80 are foreseeably more likely to need accessible housing, and also services and supports provided in or near where they live. The cost of certain services and supports, such as hiring a live-in aide, are beyond the financial means of typical, nonwealthy, older adults. While greater options technically exist for older adults who are income-eligible for housing subsidies or dually eligible for Medicaid, actual access to these options is constrained by waiting lists and insufficient availability. Residential options such as assisted living usually rely on owning a home that can be sold to generate the funds needed to pay monthly fees. The supply of truly affordable housing designed for older adults, with attention to accessibility and to proximity to local services and opportunities for social connection, is severely limited. Result: older adults and their families are making do with housing that no longer works, while compensating for services that they cannot afford or that do not exist where they live. Steep inequalities associated with race and ethnicity reflect the consequences of longstanding barriers to homeownership and to living in communities with higher property values.

Molinsky (an advisor to my project) calls for a shift in how our nation thinks about housing, aging, and care. Our current approach, in which real options exist only for the wealthy, excludes most older adults and families from making choices based on existing housing stock. (Waiting lists are not a realistic strategy for people in their 80s.) We are missing opportunities for creativity in using housing to improve lives.

Other recent publications I found useful included updated research on the future of the forgotten middle of older adults who lack wealth and do not qualify for Medicaid or housing subsidies; an essay on “longevity-ready cities” as a framework for urban planning, shifting beyond the scale and individual focus of “age friendly” services; and the smart reporting of Atlantic staff writer Jerusalem Demsas on housing.

I learned a lot about Medicare this year. There is nothing like a discharge planning meeting to drive home the crucial distinctions between what Medicare pays for and what is recommended post-discharge but not covered by insurance. The website of Medicare Rights Center, a nonprofit that provides education, counseling, and advocacy to Medicare-insured individuals (including many younger people with disabilities), is a great resource. The website of the Family Caregiver Alliance includes a comprehensive section on “caring for another,” with details on how to be decent employer if you are considering hiring home-based care workers.

Finally, the most sustaining book I read in 2023 was about caregiving, although I didn’t realize that when I bought it. Breadsong is a superb book about baking, and is also a memoir, jointly told by a young woman and her father, about severe depression, family caregiving, and recovery, anchored by a strong sense of place: a village near Oxford, England. A memorable story about interdependence and creativity—and the recipes work.

Nancy Berlinger is a senior research scholar at The Hastings Center and a Hastings Center fellow.

Bioethics Forum Essay

Texas Supreme Court Offers Roadmap for Legal Abortion

by John D. LantosPublished December 15, 2023December 15, 2023Posted in Abortion, Hastings Bioethics Forum

A recent Texas Supreme Court decision with implications for post-Dobbs jurisprudence on abortion seems to have been a victory for those who oppose the practice. It was widely read as upholding Texas’s very strict anti-abortion legislation. I suggest another possible reading of that decision.

The case focused on Kate Cox, a 31-year-old mother of two. She sought an abortion after learning that her fetus had multiple congenital anomalies, and she developed medical complications that could have made future pregnancies impossible. This month, a Texas court granted her request for a temporary restraining order on enforcement of Texas’s abortion bans, thus permitting her to have an abortion. The Texas Supreme Court overturned the lower court’s decision, and Cox then left Texas to seek health care elsewhere.

First, some facts. Kate and her husband, Justin Cox, always wanted lots of children. They have two now. In August, they learned that she was pregnant with a third. Sadly, prenatal testing showed that the fetus had multiple malformations, including problems with its heart, spine, brain, and limbs. A diagnosis of Trisomy 18 was confirmed. Kate’s doctor told her that continuing the pregnancy would jeopardize her health and make future pregnancies riskier and recommended that she terminate her pregnancy to preserve her own health and ability to have more children.

After much discussion with her husband and her family, Kate decided that terminating this pregnancy would be the right decision for her and her family. In her own words: “I do not want to put my body through the risks of continuing this pregnancy. I desperately want the chance to try for another baby and want to access the medical care now that gives me the best chance at another baby.”

Her case highlights some of the bizarreness of the current hyper-polarized world of abortion politics. Kate’s fetus would likely not survive. Kate passionately wants to have more children. Continuing the pregnancy would have decreased the chances of her having healthy pregnancies in the future. Terminating the pregnancy, by contrast, was the more pro-life strategy. Yet, in the name of an ideology that is supposedly pro-life, Texas Attorney General Ken Paxton sought to force Kate to continue a pregnancy that would not only have put her health at risk but would also have decreased the likelihood that she could have healthy children in the future.

Still, this case, and another like it that is before the Texas Supreme Court, are forcing Texas judges to do their job and clarify the implications of the thoroughly ambiguous law that is now state policy. That law says that abortion is permissible when, “in the exercise of reasonable medical judgment, the pregnant female on whom the abortion is performed has a life-threatening physical condition aggravated by, caused by, or arising from a pregnancy that places the female at risk of death or poses a serious risk of substantial impairment of a major bodily function unless the abortion is performed.”

It is unclear how serious a health threat must be for an abortion to be permissible under that exemption. The Coxes’ original petition for a restraining order noted some of the many ambiguities. “Nowhere in the code does Texas law define any of the following distinctions: ’risk’ versus ’serious risk’; ‘insubstantial impairment’ versus ‘substantial impairment’; or ‘minor bodily function’ versus ‘major bodily function.’ Nor does Texas law define what it means to have “a serious risk of a substantial impairment” or “a substantial impairment of a major bodily function.”

A lower court found that, if Kate continued the pregnancy, it would create a “serious risk” to “her life, health, and fertility.” The court cited medical testimony stating that, “If she is forced to continue this pregnancy, Ms. Cox is at a particularly high risk for gestational hypertension, gestational diabetes, fetal macrosomia, post-operative infections, anesthesia complications, uterine rupture and hysterectomy due to her two prior c-sections and underlying health conditions. Undergoing a third c-section would make subsequent pregnancies higher risk and make it less likely that Ms. Cox would be able to carry another child in the future.” An amicus brief from the American College of Obstetrics and Gynecology and the Society of Maternal and Fetal Medicine supported these claims. Based on these findings, the lower court issued an order that protected the Coxes and their doctor from prosecution under the abortion-banning statute.

A few days later, the Texas Supreme Court reversed that ruling.

The Supreme Court decision did two things. First, as widely noted, it overturned the lower court decision that would have protected the Coxes and their physician from prosecution under the abortion-banning law. Second, and more interesting, it proposed a set of criteria that could be read as a roadmap, endorsed by the highest court in the state, for the type of argument that would be necessary for a doctor to legally provide an abortion.

A few things have become clear from the decision. First, in Texas, a fetal condition by itself, no matter how severe, is not enough to justify an abortion. Texas Attorney General Ken Paxton noted that the law contains no exceptions to the “for unborn children with fatal conditions who are unlikely to survive long after birth.”

Instead, the only justification for an abortion is that continuing a pregnancy creates a risk to the health of the pregnant woman. The key question now is whether the determination of risk should be made by doctors, lawyers, or legislators. The Supreme Court decision was clear. Only doctors should make such determinations. The Supreme Court wrote, “A woman who meets the medical-necessity exception need not seek a court order to obtain an abortion. Under the law, it is a doctor who must decide that a woman is suffering from a life-threatening condition during a pregnancy, raising the necessity for an abortion to save her life or to prevent impairment of a major bodily function.”

The Supreme Court was also clear that the risk of harm need not be imminent. The decision stated, “The exception does not cover . . . only adverse results that will happen immediately absent an abortion, nor does it ask the doctor to wait until the mother is within an inch of death or her bodily impairment is fully manifest or practically irreversible. Rather, the exception is predicated on a doctor’s acting within the zone of reasonable medical judgment, which is what doctors do every day.”

In short, the Supreme Court decision clearly empowers physicians to exercise their reasonable medical judgment, given the unique facts and circumstances of each patient, without deferring to a judge. One way to read this decision is as the Court’s attempt to keep each case from coming to court.

The case can and should be read as a loss for Kate Cox and her physicians. But there is a clear silver lining. The Texas Supreme Court decision can be interpreted as both empowering physicians – by saying that only they and not lawyers can decide whether a woman’s health is seriously jeopardized — and coaching them on how to provide care for patients in ways that will withstand legal scrutiny. It invites doctors to use their “reasonable medical judgments” and to be offering legal protection if they do.

This opinion, somewhat surprisingly, aligns closely with the work of pro-choice lawyers who are trying to protect the integrity of the medical profession and protect the right of women to receive medically appropriate reproductive health care. Katie Watson, for example, offered physicians the following advice, “Providing standard medical care to people whose health or life is threatened by their pregnancy is neither civil disobedience nor covert lawbreaking; it isn’t even resistance. It is wise interpretation of existing law as applied to specific facts, fidelity to clinicians’ fiduciary duty to stay focused on patients in medical need, and acceptance that choices of historic consequence rarely come with zero risk.”

It is time for Texas doctors, hospitals, and professional societies to play offense rather than defense and to exercise their professional judgment as the Supreme Court is encouraging them to do.

John D. Lantos, MD, is a bioethicist and general pediatrician in New York City and a Hastings Center fellow. He blogs about bioethics and health policy at johnlantos.com/blog.

Bioethics Forum Essay

Involuntary Donation: Animal Welfare and Xenotransplantation

by Sana Baban, Ashlin Amano and Lisa MosesPublished December 8, 2023December 11, 2023Posted in Animal Welfare, Hastings Bioethics Forum

The realized promise of xenotransplantation seems to be quickly approaching, following the medical breakthrough of a pig kidney functioning for a record two months in a deceased human body. This milestone has received overwhelmingly positive media attention despite the complexity of the technical and ethical hurdles to overcome. Ethicists, physicians, and transplantation specialists have shared their apprehensions about the risks of implanting animal-grown organs into humans, including zoonotic diseases and organ rejection, which occurred in the latest attempts at pig-to-human heart transplants. However, conspicuously absent from these discussions is a major stakeholder: the animals.

Ethical questions about how we are using animals–let alone questions of whether we should use them–to create organs to transplant into humans have, unsurprisingly, been overshadowed by concerns over human research subjects and organ recipient protections. If mentioned at all in medical and bioethics literature and in the media, animal considerations have been relegated to a brief acknowledgment. Bioethicists have a duty to fully assess the ethical consequences of novel health care interventions on both those who benefit and those who are harmed. Sentient nonhuman animals are an intrinsic part of that moral consideration.

There are three crucial points to consider about the welfare of nonhuman animals used for xenotransplantation. The first point concerns harm done to the animals by the process used to create the pigs and grow the organs. The second concerns gaps in animal welfare oversight. The third is the misconception that pigs are the only animals used in the research; xenotransplantation research has required hundreds of nonhuman primates, too.

Creating organs in pigs that can be used by human bodies is technologically complex and currently inefficient and costly. Different companies use distinct, proprietary techniques. The process usually begins with a collection of pig ovaries, typically sourced from slaughterhouses, which are used to create genetically engineered embryos. The embryos have alterations made in certain genes, have human genes inserted, or have both changes. The genetic alterations are done for a variety of reasons, including preventing organs from growing too big for human use, reducing the chance of zoonotic disease transmission, and minimizing the risk of organ rejection.

The genetically engineered embryos are then cloned to produce exact copies and are implanted into surrogate sows for eventual surgical births. The donor pigs are raised separately from their mothers in a highly sanitized indoor environment. While these conditions preserve the pigs’ status as disease-free, they do this at the expense of the animals’ welfare and quality of life. Compounding animal welfare concerns is the inefficiency of the process. It takes many surgical and medical procedures on many sows to produce one viable pig for organ procurement. Each donor pig must endure a lifelong schedule of invasive procedures and monitoring until it is killed and its organs are harvested for transplantation.

The second point concerns animal welfare regulations. Pig-to-human xenotransplantation research projects are huge endeavors, involving international partners and multiple funding sources. In the United States, unlike in other regions such as the United Kingdom and the European Union, oversight of animal research is decentralized, handled within each institution, and differs based on the funding source. When projects include international partners and a mix of private and public funders and sites, it can be unclear what animal welfare regulations are mandated. Standards of care may also differ at each research site. Given the problematic history of xenotransplant animal welfare violations, one might conclude that researchers have an incentive to produce pigs for xenotransplantation in the U.S. to circumvent more stringent welfare standards elsewhere. Indeed, that is precisely what was alleged in the year 2000 when Novartis moved its xenotransplant research subsidiary from the U.K. to the U.S.

Animal welfare concerns in xenotransplantation are not limited to pigs. Pig organs must be transplanted into nonhuman primates before they can be transplanted into humans, according to Food and Drug Administration research requirements. These preclinical trials are fraught with welfare concerns, as primates undergo several invasive medical treatments and surgical procedures to implant pig organs, frequently leading to premature death. While the involvement of pigs in xenotransplantation is obvious, most people probably don’t realize that nonhuman primates are also involved. But the public should know. Data on people’s attitudes toward the use of nonhuman primates in xenotransplantation is needed in the literature for consideration by bioethicists and others concerned with the animal welfare issues it raises.

A powerful, yet deeply problematic analogy that has been used to undermine concerns of animal welfare in xenotransplantation draws a comparison between industrial pork production and xenotransplantation. Namely, if pigs are already bred for human food consumption, it should be permissible to breed them for transplantable organs. But this argument is flawed. Industrial pork production is ethically fraught for both the animals and the laborers in the industry. There are dangers in using this practice as the standard against which to compare the use of pigs in xenotransplantation when the standard itself is ethically questionable. This line of thinking perpetuates the lack of moral consideration of the use of livestock animals in different contexts, something that deserves careful deliberation.

If xenotransplantation proves successful in clinical trials, the use of nonhuman animals to produce organs suitable for transplanting into humans is both inevitable and essential. But the simple fact that xenotransplantation helps people is not reason enough to disregard animal welfare concerns. We must consider how this emerging medical treatment affects the nonhuman animals involved.

The first step is for private entities that produce and test animals for xenotransplantation to be transparent about how the animals are treated and which animal welfare oversight standards are used. Claiming the need to protect proprietary research secrets or intellectual property of the pig creation process is not a justifiable excuse for avoiding transparency. This basic and fundamental information is necessary for bioethicists and others to examine ethical issues that nonhuman animals face in xenotransplantation research methods. Only then can there be well-informed, nuanced deliberation on how to ensure a high standard of animal welfare and regulatory oversight, and how to limit the number of animals used in this novel research. Until there is greater transparency, we will remain where we are now: unaware of the cost to the nonhuman animals that are critical to the success of pig-to-human organ transplants–and at a loss for how to weigh them.

We find ourselves at a crossroads, both hopeful about this emerging medical breakthrough and troubled by its implications for fellow sentient and intelligent beings.

Sana Baban, MBE, is a project manager and research assistant at The Hastings Center. @sana_baban

Ashlin Amano, MBE, is an administrative coordinator in Columbia University’s department of Medical Humanities and Ethics. @ashlin_amano

Lisa Moses, VMD, a veterinarian and animal focused bioethicist, is a faculty member at Harvard Medical School’s Center for Bioethics and a senior advisor to The Hastings Center.

Bioethics Forum Essay

Does Calling Severe Anorexia a Terminal Condition Matter?

by Paul T. MenzelPublished December 4, 2023December 4, 2023Posted in End-of-life ethics, Hastings Bioethics Forum, Medical Aid-In-Dying

What is at stake in calling extreme, end-stage anorexia nervosa (AN) a terminal condition? In this context, “terminal” is used in the broadest sense, that is, leading to death in a foreseeable length of time, not the narrower sense in which “terminal illness” is an eligibility requirement for medical aid-in-dying (MAID) or Medicare hospice reimbursement in the United States. In this broader sense, calling extreme AN a terminal condition may be thought to have implications for end-of-life decisions, such as the refusal of life-prolonging treatment or voluntarily stopping eating and drinking (VSED). I will argue that this is a mistake, although one that needs explanation.

Patients with extreme AN are natural candidates for hastening death by VSED. Normally VSED requires those who pursue it to be sufficiently decisive and determined to overcome a strong natural desire to eat and drink. Patients with severe AN, however, do not want to eat. In fact, they want not to eat.

Vigorous discussion of whether it is appropriate to classify extreme AN as a clinically terminal illness was initiated in 2022 in the Journal of Eating Disorders by Guadiani, Bogetz, and Yager. They argued that such patients may be regarded as terminal even though they might again eat enough to survive without being force-fed. And if their condition is terminal, it is difficult to defend force-feeding them. Several commentators disagreed, among them Guarda et al., and the controversy recently attracted coverage in the Washington Post.

Since AN is a mental illness, some call into question whether patients with the condition have the decision-making capacity needed to assert their right to stop eating and drinking. On the other hand, even with a mental illness, supporting the patients in extreme AN in refusing to eat and drink may be easier to defend if their condition is terminal.

The situation is murky, indeed. Can it be clarified? I believe it can.

1. To start with, competent patients have the moral and legal right to refuse food and water by mouth, just as they do to refuse lifesaving treatment. The decision-making capacity required is not exemplary rationality or freedom from all compulsions or misconceptions, only an understanding of the patient’s own condition, of the treatments and assistance with food and drink that are available, and of the consequences, including death, of refusing them.

2. Exercising this right is generally not dependent on whether the patient’s condition is terminal. The right to VSED and to refuse lifesaving treatment still apply, for example, to those with chronic conditions that are not terminal. One might then infer that the whole controversy about whether to deem extreme AN a terminal condition is largely irrelevant. Ultimately, terminal does not do the definitive moral work; the patient’s voluntary, informed consent does. The issue, though, is still substantively significant. For one thing, the further away from naturally dying the refusing patients are, the more caution is in order in deciding whether to accept their refusal. Other details, too, need to be noted.

3. In addition, a condition can be terminal even when the patient’s decision makes it such. In hospice eligibility, for example, deliberately refusing life-extending cancer treatment does not disqualify a patient from her prognosis being terminal. Similarly, AN patients’ refusal to eat does not bar their condition from being terminal.

4. AN is not rendered significantly different because it is tied up with the person’s very identity. Angela Guarda and Cynthia Bulik have argued that since AN is tied closely to the person’s very identity, when AN patients refuse food or treatment, it their illness, not they themselves, that is speaking. It is a weak argument. If an AN patient defines her very self in part by her AN, then when she speaks, of course her illness is speaking. Or turn it around. Suppose that her illness is speaking, then given the close identification, she, too, is speaking.

5. Lack of good research on a psychiatric illness like AN is no reason to deny patients the right to refuse food and drink. Steven Dunn, whose daughter died as a result of severe anorexia, has argued that since research on psychiatric conditions like extreme AN is currently thin, we do not have to abide by patients’ death- hastening refusals. Comparisons, though, refute this argument. If a person afflicted with a relatively new virus, for example, refuses the available, partially effective treatment, we should still withhold the treatment even if research on the condition is in its infancy. Some patients may want to hang on in the hope that something more effective is around the corner, but if they do not, we should not impose the available treatment on them. In the case of extreme AN, moreover, we have little reason to think that significantly better treatment is around the corner.

6. At some point, enough is enough. Even if therapy or feeding can initially be forced on such patients, that does not mean caregivers may resort to it indefinitely. Guardini and colleagues push the question to those who want to continue forced therapy: when is enough enough? The questionable decision-making capacity of patients with severe AN may justify force-feeding for a limited time, but if they are obviously suffering, how long is such coercion justified? They are, after all, able to understand that not eating will lead to death, and they understand the treatment or feeding that has been imposed on them. In these circumstances, accepting their refusal is the compassionate and respectful thing to do.

Whether to regard severe end-stage AN as terminal is a less important issue than most parties to the controversy have assumed. But whether such AN is appropriately characterized as terminal, the justifications offered for force-feeding are weak.

Paul T. Menzel, PhD, is professor of philosophy emeritus of Pacific Lutheran University and the co-editor, with Timothy Quill, Thaddeus Pope, and Judith Schwartz, of Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death (Oxford University Press, 2021). His most recent book, with Bonnie Steinbock, is Bioethics: What Everyone Needs to Know (Oxford University Press, 2023).

Unidentified subject, onlookers and Dr. Walter Edmondson taking a blood test (NARA, Atlanta, GA)

Bioethics Forum Essay

Newly Released Documents from Untreated Syphilis Study: Ethical, Just, and Respectful Use of Archival Materials

by Faith E. Fletcher, Sophie Schott, Virginia A. Brown, Nancy Berlinger and Stephen O. SodekePublished November 27, 2023November 28, 2023Posted in Clinical Trials & Research Ethics, Hastings Bioethics Forum, Medical research ethics

To mark the 50th anniversary of the end of the United States Public Health Service’s Syphilis Study, the National Library of Medicine recently digitized and released reams of historical documents on the “origin and development of the Tuskegee syphilis study,” including journals, newspaper articles, personal correspondence, and other records. The release of these documents is a poignant occasion to consider what qualifies as ethical, just, and respectful use of archival materials.

The United States Public Health Service was responsible for conducting a 40-year study (1932-1972) designed to document the natural history of untreated syphilis among Black men from Macon County, Alabama. This notorious study systematically targeted a medically and economically disenfranchised population, provided misleading and false information about the study’s procedures and intent, and deliberately withheld treatment after penicillin became the widely available standard of care for syphilis.

The Syphilis Study Legacy Committee was established in 1994 to elicit a formal apology from President Bill Clinton in recognition of the atrocities of this government-funded study and to develop a strategy to understand and address the long-term impact of the study on Black Americans. The work of the Legacy Committee led to the establishment of the National Center for Bioethics in Research and Health Care at Tuskegee University, whose founding director was the late Marian Gray Secundy. Secundy’s personal legacies, as a passionate advocate for health equity, a visionary scholar, and an exemplary mentor and collaborator, have been the subject of recent focused work in bioethics to reintroduce her work to the next generation of scholars and advocates.

Medical historian, physician, and bioethicist Vanessa Northington Gamble chaired the Legacy Committee. In a classic 1997 essay, “Under the shadow of Tuskegee: African Americans and health care,” Gamble called attention to the invocation of “Tuskegee” to represent “racism in medicine, misconduct in human research, the arrogance of physicians, and government abuse of Black people.” To rightfully emphasize the histories of medical racism in the U.S. Gamble and other scholars have long cautioned against attributing distrust in the health care system by Black Americans mainly or solely to the betrayal experienced by the men enrolled in the USPHS study. We argue that utterances of “Tuskegee” convey a misleading shorthand—an untidy explanation for medical mistrust of the health care system among Black Americans. Simply put, it is the institutions of health care delivery––then and regrettably now––that perpetuate mistrust.

Now is the time to reframe this narrative. We can acknowledge the deep symbolism of the USPHS Syphilis Study concerning the long and continuing trajectory of abusive practices in research and health care, while reconceptualize how we think about, teach about, and pass along the legacy of “Tuskegee.” This rethinking of scholarly and public-facing discourses requires the inclusion of community-level perspectives and concerns. In recent years, Macon County leaders and advocates have called attention to the mischaracterization and misnaming of the USPHS Syphilis Study. Lillie Tyson Head, President of the Voices for Our Fathers Legacy Foundation, highlights the ongoing local, cultural, and societal harms of invoking “Tuskegee.” Head states, “When you place Tuskegee in front of the name, it gives Tuskegee the ownership, it leaves a scar on the town of Tuskegee and of Macon County. Tuskegee was not, is not, the owner of the study. It is the United States Public Health Service Study of Untreated Syphilis in the Negro Male at Tuskegee.”

The recent release of documents related to the study is an opportunity to consider what qualifies as ethical and respectful use of sensitive historical materials. It is also an opportunity, even a duty, for bioethics and medical and health humanities scholars, whose fields have been shaped in part by the need to learn from injustices in research and health care, to respond to this moment, in collaboration with historians, archivists, curators, and community members.

As bioethics and medical and health humanities scholars, we offer some initial insights and questions regarding the use and dissemination of this digital archive. How should the perspectives of community members inform the preservation, interpretation, and presentation of these documents? Will people with interdisciplinary expertise (e.g., those with lived experience, medical historians, museum curators) be engaged in the archival work? Who benefits from and who is potentially harmed by making these historical documents publicly available? How can potential harms be prevented, or the risk of harm reduced? What does it look like to recognize the full humanity of everyone involved in the USPHS Untreated Syphilis Study? How should these documents and their recontextualization of the continuing struggle for racial health justice and for trustworthiness in health care and research be used to best inform public bioethics and public humanities work? For example, public bioethics work related to this public archive could include outreach to health journalists with the goal of supporting a more robust and context-specific understanding of these materials to inform ethically grounded research and health care practices.

While approaches to representing the USPHS Untreated Syphilis Study archives will vary by discipline, we suggest that all scholars, educators, and others working with these materials remember, honor, and recognize the lives and legacies represented by these documents particularly the men, families, and local communities victimized by the study. To demonstrate trustworthiness, respect, and transparency as ethical stewards of these archival data, bioethicists and medical and health humanities scholars must lead this charge.

Faith E. Fletcher, PhD, MA, is an assistant professor in the Center for Medical Ethics at Baylor College of Medicine, a senior bioethics advisor to The Hastings Center and a Hastings Center fellow of The Hastings Center. @FaithEFletcher

Sophie L. Schott, BA, is a clinical research coordinator in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. @MyBestSchott

Virginia Brown, PhD, MA is a research scholar in Health Equity and Population Health at The Hastings Center. @VirginiaABrown

Nancy Berlinger, PhD, is a senior research scholar at The Hastings Center, where she directs the Sadler Scholars initiative for doctoral and early-career researchers from racially minoritized communities.

Stephen O. Sodeke, PhD, DBE, is resident bioethicist at the Center for Biomedical Research, Professor of Bioethics and Allied Health Sciences in the College of Arts and Sciences, Tuskegee University.

doctor at bedside holding patient's hand

Bioethics Forum Essay

Conscientious Objection and Abortion: Medical Students’ Perspective

by Leah Chen and Tudi LePublished November 17, 2023November 28, 2023Posted in Abortion, Hastings Bioethics Forum, Medical Education

A woman in her mid-30’s who was 23 weeks pregnant received devastating news: her fetus had a lethal diagnosis. Her pregnancy was not viable and would end in stillbirth. Her physician recommended dilation and evacuation, a type of abortion. The patient didn’t speak English and needed a translator. The translator explained the diagnosis but would not translate the recommended treatment because they objected to it. Two other translators also declined to do so. Despite the medical necessity of the abortion, it was delayed and rescheduled twice that day because individual anesthesiologists, technicians, and nurses did not want to be involved in, what several called, “this kind of procedure.”

After the procedure and still sedated, the patient was turned away by the post-surgical nurse on duty because she “doesn’t work with abortion patients.” The patient was wheeled around in a hospital bed for 30 minutes while we—medical students– desperately tried to find another nurse.

This is the care a patient received in a tertiary hospital located in a state where abortion is legal. However, state protections do not address the barriers to appropriate care that are posed by conscientious objection to abortion.

Another medical student in our cohort rotated at a tertiary hospital in a state where abortion is heavily restricted. Patients seeking abortion were required to undergo state-mandated waiting periods. Physicians had to read out loud state-mandated provider scripts with information about the gestational age of the fetus and the financial assistance available if they carried the pregnancy to term. The physicians were also required to show patients considering abortion graphic color pamphlets that displayed a fetus at various gestational ages. Finally, abortions were only performed at certain times on certain days to accommodate staff who were willing to even just be associated with abortion care. It became obvious to the rotating student that on top of the many legal roadblocks, conscientious objection was a prevalent unspoken barrier to abortion care.

Several of our other classmates have also encountered limitations and delays to abortion at the hospitals where they rotated. As medical students, we are often at the bedside, sitting with patients as they bear the harm of the downstream effects of conscientious objection. We do this without preparation from medical education and sometimes without the support of our clinical supervisors. There must be a better system, one that balances respect for individual staff members’ beliefs while ensuring that patients receive timely and quality care.

In health care, conscientious objectors can be doctors, nurses, and others involved in patient care who find themselves in situations where the proposed care conflicts with their beliefs. This term is used frequently in laws and policies governing abortion. A 2022 qualitative literature review of 36 papers found that conscientious objection impacts women’s access to abortion directly, when providers refuse care, and indirectly, when their community treats them differently because they have had an abortion.

Regardless of state laws that protect abortion, the current structure of our hospital systems fails to mitigate the consequences of provider refusal on our patients. Conscientious objection is undeniably a barrier to safe, quality abortion care. It is associated with significant delay in care and stigma from having had that care. These impacts pose danger and risk to patients. The WHO and United Nations have both called upon states that allow conscientious objection to ensure that objections do not undermine abortion access. The American health care system must rise to this challenge. Balancing patient autonomy and safety with the rights of staff to maintain their moral integrity demands a systemwide intervention–a way to integrate safety protocols for patients seeking abortion into institutional practice.

We believe that such change starts in medical school. When a law may conflict with a provider’s moral obligations or beliefs, values-based discussions need to be initiated early and occur continuously with students. As future providers who will soon take oaths to “do no harm,” we must talk about difficult topics like abortion care. If a provider decides that abortion is not something they can provide in good conscience, then the health care community as a whole must strive to agree on next steps so that patients do not fall through the cracks.

The International Federation of Gynecology and Obstetrics recognizes that conscientious objection to abortion is a global human rights issue. It acknowledges the stigma, burden, and lack of support that abortion providers face every day, destructively impacting their careers, and in some countries, risking their lives. It asserts that conscientious objection is not appropriate in the following situations: life-threatening emergencies, postabortion care, and when referral is not possible or would significantly delay treatment.

We believe that hospital systems in the U.S. should consider implementing similar guidelines and clarify next steps when a provider declines to care for an abortion seeker. Most importantly, we maintain that medical schools across the country need to support and educate students as they develop their own values. Future health care providers need to know what to do when their values conflict with patient care. They must determine for themselves what “do no harm” means and how to ensure that their moral conflict does not delay lifesaving treatment.

We as a medical community need to address conscientious objection and what it means for our patients. We urge our medical community to directly confront the consequences of conscientious objection and take the necessary steps to protect our patients.

Leah Chen is a fourth-year medical student at the University of Washington and an aspiring obstetrician and gynecologist who is passionate about access to reproductive health care. Tudi Le is a fourth-year medical student at the University of Washington and an aspiring emergency physician who is a passionate advocate for women’s health.

Bioethics Forum Essay

The Genetics of Obesity: A New Narrative or the Same Old Story?

by Cassie HoutzPublished November 13, 2023November 15, 2023Posted in Genetics, Hastings Bioethics Forum, Health and Health Care

On a visit to my maternal grandmother, she pulled out a shoebox of family photos that I’d never seen before. They were sepia-hued, ragged around the edges, the contrast faded. One picture in particular caught my eye: a group of women of varied ages gathered on a porch. I was taken aback by what I saw: these women – my relatives, several generations in the past – were fat. (I use this word intentionally, following injunctions from many scholars and activists who seek to reclaim the word “fat” , a way of describing bodies that do not – or in this case, would not – fit into off-the-rack clothing offered in most retail stores.)

Why was I surprised by this? After all, my mother, uncle, grandfather, and grandmother had all waged warfare against their bodies, which seemed inclined toward an abundance of flesh. It would make sense that our ancestors, too, were sturdy and large.

Yet I had clearly internalized the message that permeates the white, middle-class United States culture in which I was raised: fatness is a modern disease, a product of food abundance, overeating, and laziness.

But this image of my great-grandmother’s mother and sisters defied this story. These women lived during the Depression, subsisted on rationed food, and spent their days laboring on farms. They worked with their bodies and didn’t have much to eat. But, still, it was undeniable: they were fat. Was it possible that the narrative I had absorbed was wrong?

Current research into the genetic factors involved in body weight suggests that, indeed, bodies are not all meant to be thin. Body weight is highly heritable – estimates put body weight heritability somewhere between 40% and 70% (compare this to estimates for height at 80%). Researchers have identified at least 74 key genes for obesity, most of which have to do with regulating the leptin-melanocortin signaling pathway, which governs things like hunger, satiety, and the body’s energy expenditure. Given the preponderance of evidence that body size is heavily influenced by genes, one might imagine that a new narrative regarding fat bodies is emerging – one that might work against the “personal responsibility” narrative of obesity. Indeed, many herald research into the genetic factors in body weight as a way to fight fat stigma, claiming that emphasis on the genetic components of weight will finally squash the myth that body size is all about willpower.

This is not the first time that researchers have declared that a new medical understanding of fatness will reduce stigma. The same claims were made about the classification of obesity as a disease and about the concept of an obesity epidemic. Neither of these framings has meaningfully shifted weight stigma. If anything, they have created a moral panic and provided the facade of medical concern for health as cover for anti-fat bias.

It seems to me a kind of magical thinking to assume that explaining the genetic causes of obesity will reduce stigma when that new explanation is lodged firmly within a broader project of treating, preventing, or curing fatness. In this research, fatness is still fundamentally seen as a problem to be solved, rather than simply another way of having a body. Weight loss remains the goal. As one recent study puts it, there is “urgent need for in-depth understanding of the genetic factors involved in obesity to pave the way for tailored interventions.” Whether through identifying anti-obesity genetic targets to develop new medications or identifying individuals at risk of obesity in order to provide early intervention, the research into obesity genetics is oriented toward finding new ways to help people lose weight.

This research is undergirded by the premise that fat bodies need medical treatment. Today, drugs like Ozempic, Wegovy, and now Zepbound are the favored medical solution, with enormous profit for the pharmaceutical industry and only accessible to those who can pay the $1,000 monthly price.

Efforts to develop precision medicine (which takes into account individual genetics to make treatment decisions) for weight loss are at the forefront of the medicalization of fatness. In April 2023, the weight loss mega-corporation Weight Watchers acquired Sequence, a precision medicine weight loss company, in a $132 million deal. Its website now offers a virtual clinic and easy access to prescription medications, promising a “first-of-its-kind weight management solution.” Last month, an evaluation of a clinical trial of The Personalized Nutrition Study (POINTS), a “genetically-informed weight loss approach,” was published in Nature Communications. Direct-to-consumer genetic testing companies, such as GenoPalate and Fitness Genes, offer genetic tests to support weight loss, promising to provide information about a customer’s risk of obesity or overweight and to offer personalized, genotype-informed recommendations for diet and exercise.

In a 2013 statement arguing against defining obesity as a disease, the AMA’s Council on Science and Public Health warned that “the medicalization of obesity could detract from collective social solutions to environmental forces that shape people’s behaviors and impact a number of conditions beyond just obesity.” Against the recommendation of this Council, the AMA House of Delegates voted to categorize obesity as a disease. Today, we see the Council’s prediction coming true. Classifying obesity as a disease has not meaningfully reduced weight stigma, and it has accelerated a conventional understanding of a obesity as an individual problem to be ameliorated with individualized medical treatments. Those treatments come with a hefty price tag, as Americans spend about $33 billion on weight loss products annually. Collective social solutions that could benefit everyone remain obscured as the lens focuses ever more narrowly on medical treatment for an individual problem.

I do believe that there is liberative potential in an emerging understanding of the role of our genetic inheritance in the size and shape of our bodies. But this potential will not be realized if we cling to the medicalization of obesity as a disease, nor if we pursue genetic knowledge for the sake of finding more effective means of losing weight.

Genetic research might help us to tell a different, better story. It might go something like this: Body diversity is a part of the human species. Human bodies come in all sorts of shapes and sizes, and none are intrinsically superior to any other. Our inherited genetic profile carries with it many of the tendencies that will interact with our environment to shape our body size – from hunger and the drive to eat, the drive to move, to the basic amount of energy that our body uses to stay alive. It is not that thin people are morally superior or even better at self-control. Rather, thin people inherit a genetic profile that predisposes them to thinness. Body size has nothing to do with one’s character. Further, thin bodies are not universally healthy and fat bodies are not necessarily unhealthy, as is emphasized by the movement for Health at Every Size. There is no one way to have a healthy body and no single way that a healthy body should look.

While there are behaviors that might make us feel better in our bodies or extend our lives or help us avoid things like hypertension or diabetes, there is no guarantee that these behaviors will shift our body size. And this is a good thing – we should not strive to eradicate fatness. I do not want a future without fat. Instead, I want my to ask doctors to ask questions like, “Do you feel like you can lift the things you need to lift? Do you have the endurance to do the things you want to do? Do you have a relationship with food that feels sustainable?”

This does not mean that I want to deny access to bariatric surgery (shown to be largely effective for long-term reduction in body size as well as for reducing diabetes and hypertension) to those who would benefit from it, nor that those who want to lose weight should be prevented from doing so. (Indeed, more equitable access to bariatric surgery could be a good thing, in my view.) But I want to live in a world where, instead of focusing narrowly on fixing fatness, medicine is dedicated to a more comprehensive view of health and well-being – including food security, the availability of safe drinking water, and access to high-quality, shame-free medical care for all people.

Cassie Houtz, PhD, is a postdoctoral fellow in the Ethical, Legal, and Social Implications of Human Genetics and Genomics at the University of Pennsylvania Perelman School of Medicine.

holding hands in ad for paid plasma donation

Bioethics Forum Essay

Should Your Wedding Plans Include Plasma Donation?

by Caroline S. BeitPublished November 3, 2023November 3, 2023Posted in Hastings Bioethics Forum, Health and Health Care

When I said, “Yes!” to my partner’s proposal last spring and changed my Facebook relationship status to engaged, I expected targeted advertisements for wedding dresses, flowers, and photographers. What I did not expect were ads to donate my plasma to help pay for my wedding.

“Say ‘I do’ to donating plasma,” said the BioLife Plasma Services’ advertisement targeted to me, with a picture of a couple in a suit and wedding dress, “and get up to $900.” Despite our fear of needles, my partner and I briefly considered this as a viable option to help pay for our wedding. The average wedding in the United States costs $30,000 (although our low-key wedding will cost less). I mean, what could be more romantic than holding hands at the plasma donation center? But as I paused my scrolling to consider this option, my concerns as a bioethicist grew.

For one, the advertisements mention no risks. While plasma donation is relatively safe, risks include fatigue, bruising, bleeding, or dehydration and, though rare, fainting and serious infections. For people who do experience complications, it is unclear whether plasma companies would cover their medical expenses. Given that 49.8% of those who donate plasma earn less than 200% of the federal poverty level, medical risks could cause further financial hardship. Individuals in poverty are likely to be on Medicaid if they have insurance at all. And since Medicaid eligibility is income-linked, and being compensated for donating plasma is considered taxable income, donating plasma could bring a double risk to some people: increasing their tax burden and causing them to disqualify for Medicaid.

Compounding these risks, private plasma donation centers in the U.S.—which place these ads– have less stringent donation limits than are recommended by nonprofits and international organizations. For example, the American Red Cross (which does not compensate donors) only allows people to donate plasma every 28 days, or no more than 13 times in one calendar year. France and the Netherlands allow no more than 26 donations per year (one every two weeks). Yet the United States . permits donation up to two times a week and a maximum of 104 donations a year. Plasma donation companies in the U.S. entice people to donate frequently by offering financial incentives and referral bonuses and rewards programs.

The risks of frequent plasma donation are not limited to donors, but also extend to the patients who receive plasma. Plasma from frequent donors has been found to be of lower quality than plasma from less frequent donors.

However, around the world there is a substantial need for plasma that cannot be met without compensating donors. Someone who is seriously immunocompromised may need 130 plasma donations per year; someone with hemophilia, 1,200. Financial compensation is an effective way to increase donation. Some countries that rely on uncompensated donation must import plasma from countries that compensate their donors. The U.S. has become the largest exporter of plasma worldwide, responsible for two-thirds of the world’s supply. Export of blood products represents 3% of the U.S.’s global exports.

In addition to financial compensation, targeted advertising is an effective strategy for getting donors. So successful, in fact, that companies such as InceptSave, which calls itself “a blood donor recruitment partner,” have emerged to help donation centers grow their donor base. InceptSave hosted a panel discussion, How Do You Reactivate Blood Donors Using Social Media?, covering its strategies to help blood donation centers recruit new donors on social media including using “a multi-channel strategy that engages donors where they want to be engaged,” likely meaning targeted advertisements like the one I received.

However, targeted advertisements can be troubling when used for health-related procedures, products, and services. Hospitals and other medical entities subject to federal regulation are not permitted to use tracking technologies in a manner that would result in impermissible disclosures of personal health information or other violations of the HIPAA rules. Yet, this happens. One study found that over 98% of hospital websites used third-party tracking.

In addition, the practice of geofencing, which is often used in targeted advertising, raises ethical concerns. This technique relies on a smartphone’s geolocation services to trigger the algorithm to deliver targeted ads when the device enters a specific geographic area, or geofence. Personal injury lawyers have used this technique to target ads to someone who has entered a hospital emergency room. In the case of plasma donation centers, my lack of recent visits to a medical facility may have been one of the data points that triggered the targeted ads for plasma donation, as these centers typically seek healthy, young donors.

Ultimately, the question of whether plasma donation centers should use targeted ads involves balancing the good of plasma donation and its medical necessity with the potential harms of exploiting the poor, increasing medical risks, and selling data (especially medical data) to advertisers. One way to reduce these harms is with better personal data protections, especially for health information, such as those instituted by the European Union. In addition, the U.S. should mandate less frequent donations to protect the safety of donors. The U.S. should also require plasma companies to cover medical expenses of donors should they suffer adverse effects.

So, will I say “I do” to plasma donation? Probably not, but with better regulations, maybe I’ll consider a first date.

Caroline S. Beit is a research coordinator at Baylor College of Medicine’s Medical Ethics and Health Policy Center and will begin medical school next year.

Bioethics Forum Essay

Race, Research, and Bioethics: The Chapatis Studies

by Sreeparna Chattopadhyay and Sualeha Siddiq ShekhaniPublished October 27, 2023October 27, 2023Posted in Hastings Bioethics Forum, Research Ethics

The history of biomedical experiments on Indigenous, Brown, Black, and other people of color is long, painful, and sordid. They reveal racialized notions of bodies and a disregard for ethics affecting the autonomy, dignity, and respect of individuals and communities. Ethical questions about one such study resurfaced recently with a thread on social media that described an experiment on iron deficiency funded by the Medical Research Council (MRC) in the United Kingdom during the 1960s that asked 21 Indian Punjabi women to consume chapatis laced with a radioactive isotope.

In the thread, historian and author Louis Raw asked whether the research subjects had given informed consent. Given lingering uncertainty, a member of Parliament asked for an inquiry and a parliamentary debate.

This research first became public in 1995, when Deadly Experiments, a TV documentary, aired in the U.K. In response to the public outrage that followed, the MCR formed a committee to establish, among other things, whether procedures for obtaining consent and experimental techniques were reasonable for the time period. The MRC report raised several bioethical questions. Despite its diverse membership– including an Asian doctor, a rabbi, and an ethicist–the committee did not unravel the racialised and gendered assumptions that may have underpinned these experiments.

The report didn’t reflect on the fact that the chapatis study was the only one, among nine listed in the documentary, where the subjects were exclusively ethnic minorities. General practitioners recruited 20 women who had consulted them for minor ailments. Pritam Kaur, one of the women interviewed in the documentary, said she was not told she was a research subject and that if she had known, she wouldn’t have participated. The deception continued when the patients were driven periodically to a facility several hours away. They were led to believe that they were going to a hospital when in fact they were taken to the Atomic Energy Research Establishment to have the radiation in their bodies measured.

These practices raise the specter of therapeutic misconception, a risk when physicians adopt the dual role of clinicians treating patients and researchers conducting studies and use, or potentially misuse, their influence and trust to recruit patients as research subjects. This dual role can interfere with informed consent.

In the documentary, an MRC representative claimed that the research council had obtained informed consent. However, the subsequent MRC report concluded that informed consent processes were suboptimal, but not for reasons of deception. The explanation was more banal –information may have been lost in translation because children were often used as translators. Moreover, a Gujarati translator was employed for a predominantly Punjabi population. The word for chapatiis roti in Punjabi.

We interpret this finding to be evidence that the researchers had a cavalier attitude toward the research subjects, seeing diverse Asian populations as homogenized, stripped of their distinct languages and identities. Also, these research subjects embodied multiple intersectional disadvantages–they were citizens of a former British colony, knew little English, were young, and often depended on their families to navigate their way in a new country. While the report calls them volunteers, the voluntariness was questionable given the lack of full informed consent and their social positions.

We believe that the MRC enquiry was not conducted properly since it failed to acknowledge the possibility of physical harm, loss of dignity, and lack of autonomy to the research subjects, given the absence of informed consent and the use of deception. Further, they possessed multiple intersectional vulnerabilities.

The new inquiry by the Coventry MP, Taiwo Owatemi, is a step in this direction. At the outset, MRC must acknowledge that what happened was unjust and unethical. For the current inquiry to lead to meaningful change, there should be serious attempts to trace and apologize to the research subjects and their families. If a subject is no longer alive, the apology should be directed to the next of kin. In the 1990s, the MRC claimed that tracing subjects was not possible, but in 2023– in a digital world where almost anyone anywhere can be traced–this should be possible to achieve. An apology should be followed by a financial compensation to the research subjects or their next of kin.

These two steps are particularly important for restorative justice because they signal to the broader community that the MRC acknowledges the harms from its study. These steps can also help rebuild trust among ethnic minority groups in Britain, especially following the Covid pandemic and its disproportionate effect on Black, Asian, and other ethnic minority communities. Excess morbidities and mortalities among these groups have highlighted structural racism and inequities.

In addition to helping perpetuate health disparities, prejudices against minority groups play a major role in the exclusion of these groups from medical research in high-income countries. In 2008, the most recent year for which this data could be found, only 0.1% of trials listed in the national research register in England included South Asian populations, even though they constituted nearly 6% of the population.

For equity and good science, greater research participation is required from different communities since a diverse research pool produces more robust as well as more optimally targeted therapeutics. Acknowledging the wrongs that were done decades ago may encourage greater participation from underrepresented groups in research today.

While financial compensation may not undo the damage that occurred–an argument often used to justify not recompensing victims–we believe that compensation will help ensure procedural justice in future medical research. Compensating victims of a research project that used deception will signal that those who use unethical research methods will be held accountable. As James Baldwin said, “Not everything that is faced can be changed, but nothing can be changed until it is faced.”

Sreeparna Chattopadhyay, is an associate professor at FLAME University in Pune, India @Sree_socscience

Sualeha Siddiq Shekhani, is an assistant professor at the Centre of Biomedical Ethics and Culture, SIUT, Karachi, Pakistan. @Sualeha2

Bioethics Forum Essay

Don’t Give Symptom-Free People Alzheimer’s Drugs

by Adriane Fugh-Berman and Judy ButlerPublished October 23, 2023October 23, 2023Posted in Hastings Bioethics Forum

A large government-funded study of solanezumab, an experimental Alzheimer’s drug that targets amyloid in the brain, has found no benefit in people with normal cognitive function who have elevated amyloid levels. The results of this long-term, definitive, randomized controlled trial should stay the alarming enthusiasts who have advocated drugging perfectly normal people who have abnormal amyloid levels. But, after decades of investment in unproven anti-amyloid treatments, it’s unlikely that more data will lead industry and industry-funded groups to reverse course.

The Alzheimer’s Association, in fact, recently proposed new diagnostic criteria that define Alzheimer’s “biologically,” using plasma biomarkers for amyloid plaque. Astoundingly, the association recommends that someone with abnormal amyloid biomarkers be diagnosed with Alzheimer’s – regardless of whether the person has memory loss or any other symptoms of Alzheimer’s.

The assumption is that people with plaque in their brains will eventually develop symptoms, and if they live their whole lives without ever developing cognitive issues then they just didn’t live long enough to experience their preprogrammed decline. This is not only wrong, but dangerous. Many people ages 65 and older have significant amounts of amyloid plaque, yet never have cognitive impairment. The connection between plaque and Alzheimer’s is unclear – while amyloid is a hallmark of Alzheimer’s, there is insufficient evidence to support the theory that it actually causes the disease.

The pharmaceutical industry would love to target cognitively normal people who have amyloid plaque because that’s a huge market–30%-to-50% of older individuals. Several pharmaceutical companies have new drugs that remove amyloid plaque and are meant to treat early stages of Alzheimer’s disease with cognitive impairment, and more of these drugs are coming down the pike. In 2021, the Food and Drug Administration gave accelerated approval to aducanemab (Aduhelm), and in July 2023, Eisai/Biogen’s lecanemab (Leqembi) received full approval. Medicare will cover lecanemab for eligible patients enrolled in a registry and major health systems are expected to offer the drug. The FDA is likely to decide whether to approve the latest anti-amyloid drug, Eli Lilly’s donanemab, by the year’s end.

At the same time, blood tests that detect amyloid are now available, including one that can be purchased directly online by consumers. None of these tests have received FDA approval. While neither the testing companies nor advocacy groups recommend diagnosis by blood test alone at this point, they are already signaling their enthusiasm for simple blood tests they think will revolutionize the diagnostic process.

Until the blood tests came along, assessment of amyloid plaque was determined either by a PET scan or analysis of cerebrospinal fluid collected by lumbar puncture. PET scans are expensive and available only in metropolitan areas; lumbar punctures are invasive, uncomfortable and can cause severe headache and other side effects. None of these analyses is sufficient to diagnose Alzheimer’s.

The recent availability of both new drugs and new blood tests raise the question of whether the timing of the Alzheimer’s Association’s updated diagnostic guidelines is entirely coincidental. As one of the authors of the new guidelines explained, “it is completely feasible to diagnose the disease biologically at a mass scale” and “there’s something you can actually do about the disease.” In other words, access to blood tests will funnel more patients – and more perfectly normal people–to expensive amyloid-busting drugs.

People without symptoms of cognitive loss should not take these drugs, which have substantial risks, including death. It’s not even clear that patients who actually have Alzheimer’s disease should take these drugs, because they don’t improve symptoms. In clinical trials, patients in both treatment and placebo groups continued to decline, and the small difference between them, while statistically significant, was not clinically meaningful. In other words, neither patients nor families noticed any difference.

Anti-amyloid drugs cause serious harms, including brain bleeds and brain shrinkage. Three patients are known to have died in clinical trials for Leqembi and another three for donanemab, suggesting a rate of 1 to 2 deaths per 1,000 patients in the healthier-than-normal clinical trial population. Among the general population, who may have multiple illnesses and may be on multiple drugs, this death rate is likely to be higher.

In addition, anti-amyloid drugs, and the costs associated with treatment, are high—in the case of Leqembi, expected to run to $82,500 a year per patient. Because most patients receiving this drug are on Medicare, most of these costs will be borne by taxpayers.

Diagnosis by blood test makes sense if the goal is to identify many patients as soon as possible. Of course, drug companies want to expand the pool of people eligible for an early Alzheimer’s diagnosis, because the available anti-amyloid drugs are approved only for patients with early-stage disease. Currently, a diagnosis of Alzheimer’s involves multiple steps, including cognitive assessments, and there is a limited number of specialists with the requisite expertise to confirm the diagnosis. That’s the way it should be.

Industry and industry-funded advocacy groups have set their sights on streamlining the diagnosis process to maximize the number of people eligible for presymptomatic treatment. But if individuals with increased levels of a biomarker never experience cognitive impairment, then what, exactly, is being diagnosed or treated?

In the solanezumab trial, both the treated and placebo groups had the same rate of cognitive decline over 4.5 years. There is no s that any of the other drugs that target amyloid will do better in preventing cognitive decline in normal people.

And it’s ethically questionable to treat asymptomatic patients solely based on a biomarker. Patients are, naturally, most concerned about actual symptoms, not how much of a biomarker is in their bodies. As an epidemiologist noted, removing a biomarker can “cure” a disease without improving a patient’s experience at all. And a diagnosis of Alzheimer’s can devastate both patients and families. Recommendations to label cognitively normal people as Alzheimer’s patients, and thus make them eligible for treatment with expensive, dangerous drugs, are unconscionable.

Spending billions of dollars–sales of Leqembi and donanemab are projected to reach $5.5 billion globally by 2030 – to remove a biomarker without evidence that it is a cause of a disease is an unwise investment. Those dollars could be better spent on resources to improve known modifiable risk factors, including hypertension, hearing impairment, and diabetes, that account for around 40% of worldwide dementias. What’s worse than the misspent dollars, however, is the false hope patients and their families are being given when industry and its minions promote drugs that have shown no clinically meaningful benefit and have significant harms.

Adriane Fugh-Berman, MD, is a physician and professor of pharmacology and physiology and family medicine at Georgetown, where she directs PharmedOut, a research and education project that promotes rational prescribing. Judy Butler is a research fellow at PharmedOut. @Pharmed_Out

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