The Hastings Center has published a special report on “A Critical Moment in Bioethics: Reckoning with Anti‐Black Racism through Intergenerational Dialogue.” As stated in a news release announcing the report, it “calls on the field of bioethics to take the lead in efforts to remedy racial injustice and health inequities in the United States.”
The special report includes contributions from faculty in the Center for Bioethics and Social Justice. The essay “Colonial Geographies, Black Geographies, and Bioethics” comes from Jennifer McCurdy, PhD, assistant professor. Additionally, “On the Shoulders of Giants: A Reckoning with Social Justice” was co-authored by Libby Bogdan-Lovis, specialist emerita, Karen Kelly-Blake, PhD, associate director of academic programming, and Wendy Jiang, MPH (MD candidate at University of Alabama at Birmingham).
My essay introduces bioethicists to the works of Dr. Katherine McKittrick on human geography, racism, and colonialism. Free access. #CiteBlackWomenhttps://t.co/kukgsLyoAo
The editors of this special report are Faith E. Fletcher, PhD, MA; Keisha S. Ray, PhD; Virginia A. Brown, PhD, MA; and Patrick T. Smith, PhD, MDiv, MA. Fletcher, Senior Advisor at The Hastings Center and recent40 Under 40 Leaders in Health Award Winner, is an alumna of the Center for Bioethics and Social Justice’s former MA program in Bioethics, Humanities, and Society.
Check out our Hastings Center Special Report on Anti-Black Racism in Bioethics. We labored in love, in community, & in dialogue with our elders. This intergenerational work was birthed through solidarity, collaboration, & resistance. https://t.co/7dHNxA8YK3https://t.co/K4owM30bAt
— Faith Fletcher, PhD, MA (@FaithEFletcher) May 2, 2022
Leonard M. Fleck, PhD, and Irving E. Vega, PhD, presented at the March 24 Bioethics for Breakfast session, offering perspectives and insight on the topic “Aducanumab, Alzheimer’s: Having That Conversation.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. This session was the second of a two-part series on the theme “Paradoxes of Aging: Living Longer and Feeling Worse.” The presentation portion of the session was recorded and is available to watch on our website.
Aducanumab, a drug designed to treat Alzheimer’s disease, has been the focus of intense medical, scientific, social, and ethical controversy. The FDA Advisory Commission voted almost unanimously not to approve the drug. The research trials failed to show that aducanumab offered significant clinical benefit to patients in the early stages of Alzheimer’s, and notably the enrollment of Black and Latino patients was disproportionately low. It came as a surprise that the FDA itself ultimately gave its approval to the drug, which costs $28,000 per year and is administered monthly through infusion in a hospital setting.
Fleck provided background on Aducanumab and the clinical trials carried out by the developer, Biogen, that led them to seek FDA approval. He defined the different stages of Alzheimer’s disease, noting that over six million Americans currently have been diagnosed with some degree of Alzheimer’s. Fleck also outlined the FDA’s approval process, including their vote to grant emergency use authorization with the expectation of phase four clinical trials completed within nine years. He also pointed out that Aducanumab’s effects are limited to mild cognitive impairment and mild Alzheimer’s, with no benefit in more advanced stages. However, there have been no other Alzheimer’s disease drugs in the past twenty years with promise of significant benefit.
Bringing up concerns of social justice, Fleck discussed the cost Aducanumab within U.S. health spending, particularly within the Medicare program. It is estimated that 85% of the estimated 3.1 million Americans with a mild Alzheimer’s diagnosis are Medicare eligible, meaning the annual cost to Medicare would be in the hundreds of billions of dollars for the drug and its associated costs. Fleck asked attendees to consider whether this spending would be a just use of limited health care resources.
Vega offered attendees questions to consider: is there sufficient evidence about the safety of the drug? Is there sufficient evidence about the effectiveness of the drug? Does the treatment address health disparities in Alzheimer’s disease? He discussed the biology of Alzheimer’s disease, outlining its effect on the brain, and pointing out what is still unknown about the disease. After defining scientific rigor, Vega walked attendees through concerns about the Aducanumab clinical trials, such as participant age and the inadequate representation of Black, Hispanic, American Indian or Alaska Native, and Native Hawaiian or Pacific Islander populations.
Focusing on these disparities, Vega shared facts pertaining to Black Americans being twice as likely to have Alzheimer’s compared to non-Latino white Americans, and Latino Americans being 1.5 times as likely, compared to non-Latino white Americans. Disparities exist with increased likelihood of comorbidities like stroke, heart disease, obesity, and diabetes. Given these facts, Vega shared concern for observed adverse side effects of Aducanumab, particularly brain swelling, microbleeds, and slow brain bleeding.
Questions from attendees generation discussion about advocacy work, insurance companies, and direct and indirect costs of Alzheimer’s disease. Fleck and Vega noted the cost of care for an individual with Alzheimer’s, in a long term care facility, is typically in the $80,000-$100,000 range per year. Indirect costs include the lost wages of caregivers, and stress experienced by loved ones. Vega also importantly pointed out the context of the approval of Aducanumab: a global pandemic, COVID-19 vaccine development, and the subsequent spread of misinformation. Attendees also participated in polling questions with hypothetical situations, asking whether they agreed or disagreed with the scenarios. Responses were varied, highlighting the complexities of the topic.
Leonard M. Fleck, PhD, is a professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University. Fleck’s interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has been working on a book-length manuscript that addresses a number of ethical and policy issues related to precision medicine, primarily in a cancer treatment context.
Irving E. Vega, PhD, obtained his undergraduate degree in Biology from the University of Puerto Rico-Mayaguez Campus. He continued his research training in the Department of Cell Biology and Neuroscience at the Graduate School of New Brunswick, Rutgers University, earning his PhD. Vega completed a postdoctoral fellowship in the Neuroscience Department at Mayo Clinic Jacksonville, where he developed his research career focusing on the pathobiology of Alzheimer’s disease. Vega joined the faculty as an associate professor in the Department of Translational Neuroscience at the Michigan State University College of Human Medicine campus in Grand Rapids, MI in 2014. His research focuses on molecular and biochemical mechanisms that modulate the accumulation of pathological tau proteins in Alzheimer’s disease and related dementias. Vega is also working on ethnic disparities and the influence of ethnoracial factors on blood biomarkers in Alzheimer’s disease.
Anne K. Hughes, PhD, MSW, and Dawn Opel, JD, PhD, presented at the December 2 Bioethics for Breakfast session, offering perspectives and insight on the topic “Social Determinants of Elders’ Health.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman. This session was the first of a two-part series on the theme “Paradoxes of Aging: Living Longer and Feeling Worse.” The presentation portion of the session was recorded and is available to watch on our website.
Elders in the U.S. contend with chronic illness, disability, mental health disorders, and a host of other co-morbid conditions. The COVID-19 pandemic has illuminated the complex web of social, medical, and economic challenges faced by the elderly.
Anne K. Hughes, PhD, MSW, highlighted common concerns about aging and explained how those concerns affect LGBTQ+ older adults: cognitive and/or physical decline, isolation, financial/legal, living situations, and meaning making/legacy. Hughes shared the importance of health professionals asking questions rather than making assumptions when working with sexual and gender minority older adults. She also noted research showing health disparities at greater levels when compared to heterosexual older adults, even noting that much of the research data currently available is not inclusive of bisexual, transgender, or gender non-conforming older adults.
Dawn Opel, JD, PhD, presented on older adults and food insecurity in America. She addressed the invisibility of older adults experiencing hunger in America, lessons from the COVID-19 pandemic, programs and services available for older adults in Michigan, and the future of food security for older adults. Regarding food insecurity, many older adults are living alone, and they may use trade-offs such as skipping their grocery trip to instead pay the rent or utility bill. The pandemic also made visible the reliance on unpaid caregiving and volunteerism for access to food. Sharing data that projects more than 20 percent of the U.S. population will be over the age of 65 by 2030, Opel asked attendees to consider the actions needed now to invest in infrastructure for the future.
Discussion during the Q&A portion included the concept of aging in place, with multiple attendees sharing personal anecdotes about older adults in their lives who wish to remain independent in their homes. Broadly, both speakers touched on the importance of having conversations early on with older adults in our lives, in order to be as prepared as possible before there is a crisis situation. Discussion also touched on the technological divide, having conversations with primary care physicians, and potential policy improvements that could improve the burden on those in paid and unpaid caregiving roles.
Anne K. Hughes, PhD, MSW, is Director and Associate Professor in the School of Social Work at Michigan State University. She was previously the director of the PhD program. She is co-founder of the MSU Consortium for Sexual and Gender Minority Health Across the Lifespan, an interdisciplinary research consortium established within the College of Social Science in 2019. Prior to coming to MSU Dr. Hughes had 14 years of clinical practice experience. Dr. Hughes’ research focuses primarily on older adults with chronic conditions and improving healthcare services for underserved older adults, particularly LGBTQ+ older adults. Dr. Hughes has received external funding for her research from: Patient-Centered Outcomes Research Institute (PCORI), the John A. Hartford Foundation, and the National Institutes of Health. She is a Hartford Faculty Scholar in Geriatric Social Work and a Fellow in the Gerontological Society of America.
Dawn Opel, JD, PhD, is Director of Research & Strategic Initiatives and General Counsel of the Food Bank Council of Michigan, where she oversees research, data, legal, and compliance functions of the organization. A lawyer and researcher, her career has included positions in academic, nonprofit, and government sectors, and broadly, she works to build strategic partnerships for social innovation. Dr. Opel’s particular focus is developing capacity in Michigan for food-as-medicine interventions in the clinical setting, and she is currently involved in the implementation and sustainability of fresh food pharmacies for chronic disease self-management in federally-qualified health centers (FQHCs). She holds a PhD from Arizona State University and a JD from the University of North Carolina School of Law. Dr. Opel is adjunct assistant faculty at Michigan State University in the College of Arts & Letters.
In July 2017, Sacramento police officers raided Zityrua Abraham’s apartment during a no-knock warrant, and threw her to the ground, where she landed on her stomach. Ms. Abraham was eight months pregnant, and her one-year-old son was inside of the house. Furthermore, the police officers were at the wrong house. In May 2019, Phoenix police officers pointed guns at Dravon Ames, his pregnant fiancée, Iesha Harper, and their two young daughters, ages four and one, after their four-year-old accidentally took a doll from a Family Dollar store. Although Ms. Abraham, Ms. Harper, their unborn babies and their families “survived” their police encounters and were not murdered, we must also consider and more rigorously document the impacts of police violence on pregnant and parenting “survivors” and other witnesses.
How does police violence impact people’s reproductive decisions?
After the murder of Michael Brown in 2014 by police in Ferguson, Missouri, Imani Gandy, Rewire Senior Editor of Law and Policy, tweeted “I saw so many people on Twitter saying “I don’t want to have/raise Black children in this country.” That is a reproductive justice issue.” Since then, the intersections of police violence and reproductive justice have received more attention in the popular press. “Reproductive justice,” first coined in 1994 by a group of Black women, has spurned into a movement that supports “the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities.” The U.S. does not foster “safe and sustainable communities” particularly for Black, Indigenous, and other people of color, and that lack of safety is perpetuated through disproportionate and excessive surveillance, policing, and punishment by law enforcement. Black people have flocked to social media to vent about how even the fear of police violence threatens their reproductive and parenting decisions. Writer and journalist Hannah Giorgis has remarked that “Any force that systematically and unapologetically turns unconsenting Black wombs into graveyards is a reproductive justice issue.”
Image description: a young Black child is lovingly resting their hand and head on the exposed pregnant belly of their parent, who is standing with their arm around their child. Image source: Anna Carolina Vieira Santos/Flickr Creative Commons.
How do pregnant people experience police violence?
In 2020, the state-sanctioned murders of Breonna Taylor, George Floyd, Tony McDade and other Black people raised the public consciousness of an all too pernicious, long cycle of racist state-sanctioned violence in the United States. Ongoing advocacy and activism efforts were bolstered, calling for decreased use of force by officers, demilitarization of law enforcement, divestment of police department funding and redistribution to social services, and abolition. Nevertheless, since the summer of 2020, law enforcement has continued to disproportionately harm Black people, including assaulting and arresting pregnant Black women. In a recent study, Dr. Rachel Hardeman and colleagues found an 83% increase in the odds of preterm birth among those who reside in neighborhoods with high levels of police exposure, contact, and activity relative to those in low police exposure neighborhoods. After Zityrua Abraham’s assault mentioned earlier, she was in physical pain and her pregnancy became high risk. Although Ms. Abraham’s contact with police did not end in her murder, such exposure to law enforcement and their technologies of surveillance is still violent—physically, mentally, and emotionally. This is a type of “slow death”—a cumulative trauma borne out of the daily round of living, and in this case, living while Black.
Bearing witness
It is also critical to acknowledge and address the mental, emotional, and physical ramifications of witnessing police violence. Darnella Frazier was 17-years-old when she filmed George Floyd being murdered by Minneapolis police officer Derek Chauvin. This footage helped to galvanize worldwide protests against police violence and became primary evidence in the conviction of Chauvin. Frazier has talked openly on social media and in news stories about the chronic post-traumatic stress that she has experienced from bearing witness to Floyd’s murder by police. Additionally, her then-nine-year-old cousin also witnessed the murder. Similarly, the children and other young family members of Korryn Gaines, Atatiana Jefferson, Philando Castile, and Jacob Blake witnessed or were in close proximity to the murders of their loved ones by law enforcement. Dr. Rhea Boyd’s research and advocacy acknowledges this, and she notes the glaring absence in the research literature of the impacts of young people who have witnessed their family members murdered by law enforcement. Ultimately, we must ask what are the consequences of witness and of survival; what coping practices exist and persist amidst chronic trauma; and will we ever be able to reproduce justice?
LeConté Dill, DrPH, MPH, is an Associate Professor in the Department of African American and African Studies at Michigan State University. In her work as a community-accountable scholar, educator, and poet, she listens to and shows up for urban Black girls and works to rigorously document their experiences of safety, resilience, resistance, and wellness.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Wednesday, November 24, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Gwen Ifill is credited with coining the term “missing white woman syndrome” at the “Unity: Journalists of Color” conference in 2004. She used it to describe the disproportionate attention garnered by criminal investigations in which white women are victims, and in some cases, perpetrators. Discussions of this phenomenon resurfaced in the wake of recent media attention to the case of Gabby Petito, a 22-year-old white woman from Long Island, NY, reported missing on September 11th—and whose death, confirmed on September 21st was determined to be a homicide, allegedly at the hands of her fiancé.
It is not the attention on these cases themselves that is the issue, but rather how they distract focus away from similar cases occurring at a much larger scale, such as the disappearance of Black and Indigenous women. According to NPR, in 2020 nearly 100,000 Black women and girls were reported missing in the United States. In 2019, more than 5,590 Indigenous women were reported missing, although this may be a gross underestimation given the lack of adequate reporting systems. Most of us would find it difficult to name a single one of them. Yet in the past weeks, our screens, newspapers and minds were filled with Gabby Petito’s name, her story, and her images. Petito’s death is undoubtedly a tragedy, and the fact that it has been so prominently reported is not problematic in of itself, but it is symptomatic of a deeper failure.
Image description: a puzzle of solid white puzzle pieces is assembled with one missing piece remaining in the center leaving a black empty space. Image source: Willi Heidelbach/Pixabay.
From a racial justice perspective, part of the issue is the entrenched racial stereotyping underlying the belief that women of color are somehow at fault for their own disappearances and any violent acts against them. According to Dr. Ashraf Esmail, Director of the Center for Racial Justice at Dillard University, there is a perception that risky lifestyles and personal choices are a license to shift the blame to the victim and diminish social responsibility for these cases. A report published by the Urban Indian Health Institute found that 38 percent of media articles reporting on murders and disappearances of Indigenous women and girls made references to drugs or alcohol. Narratives portraying women of color as angry or hypersexual are also part of this problematic perception, says Dr. Kaye Wise Whitehead, associate professor of Communications and African American Studies at Loyola University Maryland.
But this is not simply another failure of the justice system to respect and protect the lives of Black people and other people of color. In addition to being a racial justice issue it is a public health issue. As with other public health issues, the collection, interpretation and reporting of data can be both a problem and a solution. In this case, it is one of the deep roots of a complex, systemic problem. The title of a 2020 article on the crisis of missing and murdered Indigenous women and girls summarizes it well: “They Disappear Not Once, but Three Times: In Life, In the Media, and In the Data”.
There are levels to how women and girls of color disappear in the data. First, the racial and ethnic breakdown of data categories unsurprisingly reflects the pervasive structural and systemic racism of our information management systems. The FBI’s missing person databases’ race categories are Asian, Black, Indian, unknown, and White. There is no category for Hispanic or other ethnicities, nor any subcategories for different Indigenous groups. Even within those limited categories, race misclassification is a common issue. The Missing and Murdered Indigenous Women and Girls Report found one instance in which a law enforcement agency still used an outdated coding system dating as far back as the 1960s, in which “N” was interchangeably used for “Negro” and “Native American.” This report also identified several police departments as including American Indians and Indian Americans in the same category. At least one of the databases (the FBI’s National Crime Information Center) does not allow data to be analyzed using race and gender combinations (e.g. “Black” and “woman”), making it difficult to obtain information on actual numbers of women of color reported missing.
Image description: a participant in the Greater Than Fear Rally & March in Rochester, Minnesota is shown wearing a grey knit hat, and they have a handprint on their face in red paint that covers their mouth. Image source: Lorie Shaull/Flickr Creative Commons.
Second, there is no national, unified system for the reporting of missing persons. In the United States, there are three federal missing person databases: the FBI’s National Crime Information Center (NCIC); the FBI’s National DNA Index System (NDIS), and the National Missing and Unidentified Persons System (NamUs), administered by the Department of Justice. One failure of this setup is that data on missing individuals entered into one database does not automatically populate or transfer to other databases, and access varies. NCIC and NDIS can only be accessed by local, state and federal criminal justice agencies, while NamUs is public and can be accessed by families of missing persons, law enforcement, medical examiners, and victim advocates. While NamUs seems like a good resource, especially to those victims and families who fall through the cracks of law enforcement, it is not mandatory for criminal justice agencies to report to NamUs in all states. Additionally, while almost all law enforcement agencies use NCIC, only a small fraction are registered to use NamUs. In a country with well-documented systemic racism issues, leaving federal reporting up to the good will of local law enforcement is a losing game for women of color.
The final piece of the puzzle is a lack of inclusion of relevant socioeconomic data that would allow a contextualized analysis of cases. This would not only increase chances of recovery of missing women and girls of color, but also help plan and implement preventive strategies. A first step to achieving this is making the collection and analysis of missing persons data inclusive and intersectional. This includes efforts to decolonize data, which from a public health perspective means gathering the data that a community itself finds meaningful, in ways that align with their social structures and cultural practices. But to be clear, these solutions also need good allies outside of those communities. Tomorrow, another Black or Indigenous woman will go missing, and many of us will be sad and angry again. In the meantime, the systems that continue to render missing women of color invisible and uncountable remain unchanged.
Monica List, PhD, is an assistant professor in the Center for Bioethics and Social Justice in the Michigan State University College of Human Medicine; Dr. List is Head of Research and Animal Welfare for World Animal Protection, an international non-profit animal welfare organization.
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The COVID-19 pandemic has brought to public attention the phrase “crisis standards of care.” This is not a phrase that is especially meaningful to most members of the public. My concern, speaking as a medical ethicist, is that it is not intended to be especially meaningful for the broad public. Instead, it is what I would describe as a bit of “antiseptic rhetoric” intended to cleanse the public conscience of otherwise troubling ethical choices health professionals might be required to make during a pandemic.
Of course, antisepsis is generally good. It prevents potentially life-threatening infections. However, very aggressive antisepsis aimed at creating a hyper-sterile environment can result in an immune system that is “uneducated,” ill-prepared for a powerful pathogen that manages to elude our antiseptic efforts. My concern is that the use of antiseptic rhetoric around COVID-19, as with the phrase “crisis standards of care,” weakens the capacity of the public to understand and thoughtfully address the troubling and tragic ethics issues generated by COVID-19 in both the health care and political sectors of our social life.
Image description: A grey and white illustration of a single empty hospital bed sitting underneath a light that is shining down onto the bed. Image source: Izwar Muis/Pixabay.
The antiseptic meaning of “crisis standards of care” is that there are too many patients who need care all at once, and consequently, the normal expectations for timely and effective care will not be met. Delays will occur. As a patient, you might be parked in a hallway on a gurney for a few hours until a room becomes available. This is annoying, but hardly cause for an anxiety attack. However, this is very far removed from the reality that patients are facing in Idaho, Montana, Georgia, Florida, and several other states where the Delta variant of COVID-19 has overwhelmed the hospital system.
I was prompted to think about crisis standards of care by a recent article in the New York Times, “’I just cry all the time’: Non-Covid patients despair over delayed care.” The article tells the story of Mary O’Donnell, age 80, who needed a five-hour back surgery procedure that was postponed indefinitely due to the hospital being filled up. She was going to need multiple days in the hospital after surgery. Her concern was that she would be permanently impaired if the surgery were not performed very soon.
Of course, the person who would occupy the bed she needed would be a COVID-19 patient with a life-threatening condition. That person might survive, but maybe not. Mary O’Donnell did not have a life-threatening condition. She was “merely” at risk for losing the functioning of her legs. That is a terrible sentence to write, but it was the medical and ethical reality. This is rationing: painful, tragic, unfortunate, and sometimes unjust.
Here is another headline that better elucidates the meaning of crisis standards of care. “After 169 hospitals, a dad finally got the Covid-19 care he needed—and changed dozens of skeptics’ minds.” Robby Walker, age 52, needed ECMO (extracorporeal membrane oxygenation) to save his life—to serve as an artificial heart and lungs for him. That was in Florida. He ended up being transported by air to a hospital in Connecticut that had an ECMO bed. Readers should realize that this could hardly be the fate of hundreds of other COVID-19 patients needing ECMO. Reed Hickson, age 49 and the father of twelve in Texas, was unable to find an available ECMO bed in all of Texas. He died. That is what “crisis standards of care” means in practice.
Patients with advanced cancers or advanced heart disease needing surgical treatment will have those surgeries postponed with unknown consequences. Maybe a delay of those weeks will make no difference for that cancer; it will be effectively managed. Maybe the cancer has already metastasized, and the fate of that patient is sealed. Maybe the cancer will metastasize in those intervening weeks. Again, this is what “crisis standards of care” means in practice. It is health care rationing that necessarily implies problems of health care justice.
If there are not enough ICU beds or ventilators, then those scarce life-saving resources will go to patients who are judged most likely to survive. How is that judgment made? Can the public be confident it is made fairly? Is it ethically more important to save the most lives or the most life-years? This is a critical distinction.
Another phrase that has attracted some media attention pertains to a hospital invoking “universal do-not-resuscitate orders” for COVID-19 patients. Some right-wing media sites have warned COVID-19 patients that they must stay away from hospitals because hospitals have agreed not to treat COVID-19 patients but just let them die. No doubt those same sites are falsely pushing ivermectin as a treatment you can administer to yourself in the quiet of your own bedroom. What the phrase “universal do-not-resuscitate order” does mean is that if a COVID-19 patient codes in the ICU, there will be no effort to resuscitate them. The justification for a policy that would likely elicit anxiety, anger, and horror in much of the public is that such an effort would put at risk the lives of the health professionals attempting that effort. Further, the patient would most likely, not certainly, die despite that effort.
Here is a hard question: if you are a patient with a cancer or advanced heart disease needing surgery that has been postponed, how should you feel about that policy? You can survive, you want to survive, and you need that bed. Alternatively, if you are a COVID-19 patient in the ICU with a somewhat uncertain prognosis, how should you feel about that policy? These are the painful realities of crisis standards of care. This is health care rationing.
These are policies and policy choices that need public awareness, public understanding, and public legitimation. This requires hospitals and political leaders willing to take the risks associated with informing and engaging the public in discussion of the hard ethical choices that COVID-19 has thrust upon us. Antiseptic language may be innocuous (and politically desirable). However, the immune system of a democratic society, public reason, requires robust, honest, exacting language to strengthen its ability to resist infectious obfuscation and viral disingenuousness.
Leonard M. Fleck, PhD, is Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University.
Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Wednesday, October 20, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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The Texas legislature recently passed a law prohibiting abortion of a fetus older than six weeks. The law allows abortions after six weeks in life-threatening emergencies, but not when the pregnancy results from rape or incest. The law is extraordinarily restrictive and additionally deputizes citizens to enforce the law, providing a $10,000 bounty for successful civil suits of people involved in the “aiding and abetting” of abortion. The Supreme Court of the United States recently neglected to halt the law, which meant it went into effect.
We can’t be sure of the exact thoughts of those who enact or support the bill. However, there are some claims that such people often hold. In an article set to appear in Cambridge Quarterly of Healthcare Ethics, we argue that these claims imply that if one supports restrictions on abortion, one must also support compulsory organ donation. In other words, if you support restrictions on abortion, to remain intellectually consistent you must also support a corresponding degree of compulsory organ donation.
The Duty to Protect
Our argument starts with a claim common to those who oppose a woman’s right to choose to have an abortion. This claim is that a mother has a duty to protect her fetus.
The duty to protect is supposed to be a special obligation that holds between mother and fetus. Special obligations are those that hold between people in virtue of some relation between them. We have many obligations to other people; most apply regardless of how we are related to them. But special obligations arise only in the context of certain relationships, such as those that hold between parent and child. Most people agree that a mother or father’s obligations to their child are different from those that they have to strangers. Here’s one example: a parent has a duty to protect their child, but no such duty to protect a stranger who lives in a distant locale. There are other ways to explain the duty to protect, but the one we prefer is that special obligations kick in when one person’s life is vulnerable to another person’s actions (Goodin, 1986). The more one person’s well-being is vulnerable to another person’s actions, the more the second person must protect the first. Thus, on this view the mother has such a strong duty to protect the fetus that she must allow it to use her body, willing or not.
From Prohibited Abortion to Compulsory Organ Donation
But there are other implications of this line of argument. What’s true of the mother-fetus relationship is also true of the parent-child relationship. If a fetus has full moral status, then so does a child. And children are highly vulnerable to their parents. Their well-being is significantly affected by their parents’ actions. This is true not only of their social and emotional well-being, but also of their physical well-being. This is especially true of children who need organ or tissue donation.
Children who need blood products or a kidney, liver, heart, lung, or any other organ are highly vulnerable to their parents’ actions. At a minimum, the child is vulnerable to the parent’s cooperation with the healthcare team’s treatment plan. But the child who needs an organ or tissue donation is also vulnerable to the parent’s biology. In particular, a parent may be the most biologically compatible potential donor. For parents who are a compatible donor for their child, the child’s well-being is extremely vulnerable to their parent’s actions. In a society where organs and tissues are a scarce resource, the child’s vulnerability to a biologically compatible parent is a matter of life and death.
Children who need organ or tissue donation to survive are about as vulnerable to their biologically compatible parents as a fetus is to its mother. If a mother must donate her body to her fetus unless doing so emergently threatens her life, then a parent must donate organs and tissues unless doing so emergently threatens their life. This obligation would hold for both mothers and fathers. If a child needs a kidney and their father is a match, he must donate his kidney to his child, even if he doesn’t want to. Donating a kidney is not emergently life-threatening, nor is donating a variety of other organs and tissues. If mothers shouldn’t have a choice to terminate a fetus, parents should not have a choice about whether to donate organs and tissues.
A Policy Proposal
To be clear: we are not arguing that abortion is wrong or that it should be allowed. Nor are we arguing that tissue and organ donation should be compulsory. Rather, we are drawing out the implications of the anti-choice position. There are ways out of this implication, but they are unfriendly to the anti-choice position. For example, they may wish to accept that mothers have a duty to protect the fetus, but deny that they do so in virtue of the vulnerability of the fetus to the mother. Such a strategy is not likely to help their position, as other available accounts of special obligations are even less supportive (such as the view that special obligations only arise when someone voluntarily takes them on (Brake, 2010), which clearly isn’t the case when someone seeks an abortion).
For people who support the Texas law, intellectual consistency demands they also support compulsory organ donation. Thus, supporters should also consider legislation compelling parents to donate organs and tissues to their children, even if they don’t want to, and even if doing so presents a significant risk to the parent. Indeed, they should also want to deputize citizens to enforce the law, such that there is a $10,000 bounty on biologically compatible parents who fail to donate.
But if such a policy is unacceptable, so is the Texas law.
Parker Crutchfield, PhD, is Associate Professor in the Department of Medical Ethics, Humanities, and Law at Western Michigan University Homer Stryker M.D. School of Medicine. His research interests include biomedical and public health ethics, moral psychology, and epistemology. His book, Moral Enhancement and the Public Good, was released by Routledge in 2021.
Emily Carroll is a third-year medical student at Western Michigan University Homer Stryker M.D. School of Medicine. She completed her undergraduate studies in psychology and biology at McGill University. Her research interests in medical school include bioethics and public health.
Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Thursday, October 7, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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By Larissa Fluegel, MD, MHS, and Sean A. Valles, PhD
The U.S. COVID-19 pandemic summer surge has inspired a public search for answers as to why wide vaccine availability has not been sufficient to prevent a new wave of infections. Certain answers are plausible, such as blaming the surge on some combination of the more infectious delta variant spread, vaccination rates remaining too low on average and excessively low for some populations, a relaxation of formal disease control restrictions, as well as more nuanced informal social habits such as diminished mask-wearing, more indoor parties, etc. Yet others cast blame onto a much less plausible target: immigrants.
Florida Governor Ron DeSantis blames President Joe Biden for being too lax on the southern U.S. border immigration enforcement, suggesting that Biden has been “helping [to] facilitate” the pandemic. Governor Greg Abbott of Texas took things further, ordering that state law enforcement could “begin pulling over vehicles whose drivers are transporting migrants who pose a risk of carrying COVID-19.” Both of these responses to the pandemic spread are unethical, incoherent, and ineffectual. Accusations against Latin American immigrants are unethical and misguided.
For many reasons, blaming those immigrants crossing the southern U.S. border for negative health outcomes is problematic. Such targeted blame is dehumanizing to immigrants—it promotes negative stereotypes that perpetuate discrimination, mistreatment and health disparities, and by extension, it is detrimental to non-immigrants’ health. Moreover, it is a form of blame shifting that prevents authorities and the public from effectively taking responsibility for community-wide problems.
Image description: a black and white photo of an individual holding a sign that reads “Hamilton was an immigrant. Einstein was a refugee.” They are wearing a long jacket and a tricorne hat. Image source: Victoria Pickering/Flickr.
Blaming immigrants is dehumanizing
There is a long history of dehumanizing immigrants to the U.S., although such dehumanization is generally done selectively. Immigrants such as Charlize Theron and Albert Einstein are treasured, while others are despised for having the “wrong” skin color, accent, occupations, and so on. Dehumanizing and targeting immigrants has been part and parcel of U.S. history, from 19th century church-burning riots that terrorized Irish immigrants, and the overtly racist Chinese Exclusion Act, to current cases of medical abuse and neglect in migrant detention centers. Philosopher David Livingstone Smith traces these sorts of systemic cruelties to a process of dehumanization in which we find ways of convincing ourselves to think of certain groups of people as somehow less than human. To convince ourselves we seek justifications such as depicting immigrants as vermin infecting or invading a country. According to Livingstone Smith, such depictions then give us permission to act aggressively against those groups and to “exclude the target of aggression from the moral community.”
In sum, we find ways to give ourselves permission to dismiss the ethics of how we treat certain groups of people. With such misplaced permission, we decide that certain groups, in this case select immigrants, don’t count as fellow humans worth caring about, and so abuse doesn’t really count as abuse. It’s this sort of misguided logic that also explains Governors Abbott and DeSantis’ school mask requirement bans. Paradoxically, their purported attempt to reign-in government restrictions on individuals simultaneously reveals disregard for the ways in which harsh immigration enforcement strategies negatively impact the lives of immigrants.
Blaming immigrants promotes negative stereotypes that perpetuate discrimination, social mistreatment, and unjust health disparities. Since early in the pandemic, anti-Asian racism and xenophobia mixed in with COVID-19 politics has led to a worldwide phenomenon of hate crimes against anyone appearing to be of Asian descent, and vicious expressions of misguided blame directed at anyone from the same vague region as where the pandemic originated. Historically, and erroneously, people in the U.S. have associated immigrants with human disease and contagion. Immigration authorities have long scrutinized immigrant health when deciding who can enter or remain in the U.S. Additionally, there is a false perception that immigrant illnesses are predominantly acquired before entry to the U.S.; it is instead most often the case that immigrants tend to struggle with worsening health as they spend more time adopting U.S. cultural norms, including unhealthy eating habits.
Stereotypes about “unsanitary” immigrants represent cruel and unjustified blame shifting. For example, consider meat processing plants which have been hot spots for COVID-19 outbreaks. Staffed predominantly by an immigrant workforce, those workers face abusive and unsanitary working conditions (an open secret in the industry for over a century) that foster disease outbreak. Laying blame for this suffering on immigrant workers, or immigration generally, is a horrendous ethical mistake. Statements by public figures like Governors Abbott and DeSantis contribute to morally skewed views about immigrant health.
Unhealthy negative stereotypes hurt people and cost all Americans a lot of money
Another pragmatic consideration is how those immigrants who do fall ill interface with the U.S. health care system. Negative stereotypes about immigrants among health care providers lead to substandard and/or improper care. In fact, the anticipation of being mistreated coupled with fear among those with an undocumented immigration status serve to dissuade immigrants from seeking needed care. Such fears might even discourage some from getting the COVID-19 vaccine. In this way, blaming immigrants contributes to worsening the pandemic. (A related irony is that nearly 1 in 3 doctors are themselves immigrants.)
There is a public health concern to this sequence. Delaying or avoiding care harms immigrants as well as those around them. To avert transmission, contagious diseases need to be treated in a timely manner. Not doing so leads to an underestimation of actual disease distribution and burden. A correct estimation is necessary to determine the right amount of resources and timely measures necessary to contain them. It is a waste of public resources to have those in need use emergency rooms for care that, if identified and delivered in a timely manner, could have been averted before the situation worsened. Part of the motivation for the Affordable Care Act was to increase access to regular necessary care, yet undocumented immigrants were excluded from benefitting from the Act, despite the fact that providing coverage would have improved public health and probably saved the public money as well. For example, consider strep throat, a condition that is easily treatable with inexpensive antibiotics. Left untreated, strep throat can get complicated and potentially cause serious long-term heart problems. Untreated strep throat might drive a person to seek care in an emergency department. Yet another example is an untreated dental cavity that might lead to a dental abscess or a deep skin infection of the mouth and neck, again possibly resulting in an emergency room visit. Once there, correct diagnosis would require fluid cultures and expensive MRI or CT imaging. The cost of delayed care is borne by all of us. Some combination of insurance companies, hospitals, or government pay those excess fees, passing along costs to everyone else.
Speaking out
It is unfortunately fashionable across the U.S. and Europe to blame immigrants for social problems. Economic and social problems are quickly blamed on immigrants. Conversely, the available evidence points to immigrants being economically and socially beneficial to their respective new country.
We, the authors, come to this issue as people who have committed their professional lives to making healthcare and health policy more humane—seeking to help our future physicians and our colleagues treat patients as complex human beings deserving of care, rather than revenue streams to be maximized. Similarly, we see immigration discussions falling prey to the same mistake so common in healthcare, wherein powerful decision-makers, such as politicians, lose sight of their shared humanity with the people whose lives depend on them. We need to demand better from our political leaders and importantly, we need to speak out when politicians dehumanize immigrants.
Larissa Fluegel, MD, MHS, is an Assistant Professor with the Center for Bioethics and Social Justice and the College of Human Medicine at Michigan State University where she teaches social context of clinical decisions.
Sean A. Valles, PhD, is Associate Professor and Director of the Michigan State University Center for Bioethics and Social Justice. He is author of the 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era (Routledge Press).
Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Thursday, September 2, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Center Assistant Director and Associate Professor Karen Kelly-Blake, PhD, recently presented at the Michigan Academy of Nutrition and Dietetics 2021 Virtual Spring Conference. Dr. Kelly-Blake presented on “Dietitian and Client Base Mismatch: Are There Ethical Implications?”
In this information age, the ways patients gather information about their health and how they process this information to make decisions, within the constraints of their particular social context, is of utmost importance. Dr. Kelly-Blake explained the value and ethical aspects of shared decision-making to enhance nutrition adherence goals, help practitioners understand the constraints of the dietitian and client dyad mismatch, and address this mismatch with the goal of advancing professional practice.
Recent U.S. headlines are starting to reflect a dawning public awareness that health experts have long suspected: COVID-19 might be with us for a long time. In January 2021, almost 90% of coronavirus expert respondents to a poll by Nature considered it “likely” or “very likely” that the virus will continue to circulate somewhere on the globe for years to come. As vaccine rollout continues, the crisis in India has yet again revealed the devastating consequences of pandemic mismanagement. Only two infectious diseases have been successfully eradicated globally: smallpox, and the lesser-known rinderpest. A world in which COVID-19 is endemic might be one that requires long-term public health planning and requires bioethics to recalibrate. The global health and social impact of the pandemic makes COVID-19 challenging to compare to other infectious diseases. However, ongoing multidisciplinary analysis of tuberculosis (TB) provides one demonstration of the possible contributions of bioethics looking forward.
Pandemics as social levelers
A bacterial as opposed to viral infection, TB outbreaks peaked in different places across the world throughout the 1700s and 1800s (Barnes, 2020). During such periods, TB affected people across social strata. Affluent instances of TB contributed to the emergence of social narratives romanticizing TB as a condition striking those with a more sensitive and artistic temperament (Bynum, 2012). Prior to the emergence of germ theory, TB was considered a hereditary condition, running in families with such temperamental proclivities. The notoriety of some TB patients bears resemblance to early celebrity cases of COVID-19 that circulated on social media, normalizing infection while illustrating both recovery and vulnerability. The social and cultural variability of such notoriety is also significant, with India’s highly publicized celebrity suicides during lockdown requiring more analysis to tease apart the mental health impact of COVID-19. Meanwhile, the death of well-known human rights advocates, such as actor Vira Sathidar, from COVID-19 has prompted reflection on the pandemic’s cost to India’s creativity in addition to the devastating loss of life.
Image description: Print from 1922 shows a girl sitting by a window watching children playing outdoors. The title reads “Outdoor Play and Tuberculosis,” with the text: “Outdoor play is as necessary to health as food or sleep. At home, let the children play in the yard or on a well-guarded roof. At school, ample open air playgrounds must be provided. The city that fails to provide public playgrounds may be forced to provide tuberculosis sanatoria.” Image source: public domain/GetArchive.
Hopes for eradication
In the early 1900s, incidence of TB declined as living and nutrition conditions improved, and as populations acquired natural immunity. Some of these improvements were prompted by critiques of industrialization, which contributed to crowded and inhumane living and working conditions (Barnes, 2020).And yet, the same romantic narratives that normalized TB in the affluent also reflected and fostered social indifference to—and scapegoating of—the poor living with TB (Bynum, 2012). The development of effective antibiotic treatment and a childhood vaccine accelerated population health gains in the 1940s and 1970s respectively. The relative influence of economic, political, and biomedical casual factors in driving the decline of TB continues to generate debate across epidemiology and social sciences. Public health gains during this century shaped hopes for global TB eradication.
Rising inequality
However, the 1990s marked a time of increased recognition of resurgent TB across all nations. As with the recent COVID-19 surge in India, a social model of health is needed to account for resurgence of TB. 20th century rates were simultaneously influenced by global policy failure to address health needs of those in poverty, cultural and political events, and new pathogen variants. The rise of HIV and AIDS produced a distinct yet overlapping pandemic, as the immunocompromised are especially vulnerable to TB co-infection. Multidrug resistant tuberculosis (MDR-TB) had been developing alongside use of antibiotics. Medical anthropologist and physician Paul Farmer has been widely critical of global economic policy, which influenced bifurcated standards of care in affluent Western nations and the global south and to the rise of MDR-TB. The moral valence of communities worth investing in is also intertwined with histories of colonialism and ongoing racial and class dynamics that we have seen recapitulated during COVID-19 within the U.S. and globally.
Resistance and its social meaning
Antimicrobial resistance raises a distinct set of ethical issues, from obligations of antimicrobial stewardship to imperatives for drug and diagnostic tool development. The potential for development of COVID-19 vaccine resistance is an ongoing concern. Some fear that SARS-CoV-2 variants have mutations that render them uninhibited by (resistant to) neutralizing antibodies, thereby creating the possibility of “escaping” the immune system response seen in the already infected and/or vaccinated. The development of immune escape is a crucial factor in determining whether COVID-19 becomes endemic. The social implications of pathogen genomics are multifaceted:
First, identification of new variants is now viewed by media organizations as newsworthy, influencing public perception of how outbreaks occur. The history of TB demonstrates that public interest could wane if media organizations in affluent nations lose interest in their novelty.
Second, genomic surveillance illustrates one of the most promising areas of precision public health, requiring ethical guidance for establishing trust, transparency, and community welfare. However, the history of TB demonstrates the continuing global disparities in global health surveillance laboratory capacity.
Third, Emily Martin’s ethnographic work on American understandings of immunity demonstrates the interplay between depictions of the body and pathogens, expert and lay experiences of disease, and social ideals (Martin, 1994). COVID-19 has undoubtedly altered human views of their relationship to microbes and will continue to do so in unanticipated ways.
Economics & TB
Currently, almost one quarter of the world’s population lives infected with tuberculosis. Many have a latent TB infection, which is not contagious. However, if untreated, latent TB can develop into active TB. The World Health Organization estimates that 10 million people fell ill and 1.4 million people died from TB in 2019. India leads the world in TB cases, an often-noted harbinger of its potential role in COVID-19 global health outcomes. The social determinants of health continue to need greater policy attention: 49% of people with TB continue to face catastrophic costs, defined as greater than 20% of annual household income. Drug resistance exacerbates these economic barriers: around 80% of people with MDR-TB face catastrophic costs. The economics of COVID-19 echo these relationships. As I write, members of the World Trade Organization are negotiating details of waiving COVID-19 vaccine intellectual property rights.
Image description: Black and white photo of a tuberculosis ward of the Hasköy Hospital for Women in the late 19th century. Image source: public domain/GetArchive.
Image description: A row of empty beds in a hospital ward in Assam, India in response to the 2020 COVID-19 pandemic. Image source: AnjanBorah/Wikimedia Commons.
Endemics and social justice
The newly renamed MSU Center for Bioethics and Social Justice is an apt reflection of the shifting role of bioethics, including its attention to matters of population health. Emeritus faculty member Judith Andre notably argued bioethics is best understood as a multidisciplinary practice (Andre 2002). Bioethics practices must change in response to persistent and rising health inequities, including in infectious disease. TB outbreaks have affected community health for millennia, impacting residents of ancient Egypt and Greece. It is Ancient Greek, too, that provides the etymological differentiation between pandemic and endemic infections: pan, meaning “all,” en meaning “in,” and demos meaning “people.” We can sustain hope that COVID-19 will fade into the background, becoming another one of many common childhood coronavirus illnesses that does not confer serious symptoms. However, as this brief glimpse of the ethics and history of TB illustrates, COVID-19 merits distinct ethical analysis to avoid complacency.
Join the conversation
Global eradication of COVID-19 through universal vaccination requires a collective effort on a scale rarely achieved in human history. How do you think bioethics can generate new collaborations to sustain the global response to COVID-19? What values are relevant to you if COVID-19 becomes in the people as well as affecting all of us in this global emergency?
Karen M. Meagher, PhD, is an Assistant Professor of Biomedical Ethics Research at Mayo Clinic. Her main research interest is in ethics and social implications of human and pathogen genomics. She also holds the position of associate director of public engagement in which she leads a community engagement network for the Mayo Clinic Biobank in the Center for Individualized Medicine.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, May 27, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
You must provide your name and email address to leave a comment. Your email address will not be made public.
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