How brain death declarations can harm, and why legal exemptions should be the rule

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The 2022-2023 Bioethics Public Seminar Series will conclude next month with a webinar from Center Assistant Professor Jennifer McCurdy, PhD, BSN, MH, HEC-C, on “How Brain Death Declarations Can Harm, and Why Legal Exemptions Should Be the Rule.” This virtual event is free to attend and open to all individuals.

Wednesday, April 19, 2023
1:30-2:30 PM EDT (UTC−04:00)
Zoom webinar registration: bit.ly/bioethics-mccurdy

According to U.S. law and The Uniform Determination of Death Act (UDDA), an individual can be declared dead by either cardiac or neurological criteria. The latter, known colloquially as brain death, allows a physician to withdraw patients from medical devices against the wishes of families and other surrogates. While once seemingly settled, the concept of death by neurological criteria has increasingly become a topic of controversy, both technically and philosophically.

This seminar will argue that the UDDA should make New Jersey-style legal exemptions to brain death declaration a national guideline, thus allowing individuals to claim a religious exemption when they disagree that brain death is, in fact, death. Why? Because the concept of brain death is based on a specific eurochristian worldview that is not held in common by many reasonable people in U.S. society. The imposition of those unshared worldviews on patients and their loved ones through force of law causes unjustified and avoidable trauma, furthers epistemic injustices, and generates distrust.

Jennifer McCurdy with Spartan helmet graphic in bottom right corner.

Jennifer L. McCurdy is an assistant professor in the Center for Bioethics and Social Justice within the Michigan State University College of Human Medicine. She is a clinical and social bioethicist and educator whose work focuses on understanding and eliminating racial and colonial injustices in contemporary health settings and communities. She currently engages medical students at MSU in curricula related to social context and ethics issues in healthcare. Her current research focuses on brain death policy, Black birthing family safety, and Indigenous representation in bioethics.

Can’t make it? All webinars are recorded and available in our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our email list.

Examining how doctors and patients distinguish between normal and pathological events through the case of epilepsy

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The 2022-2023 Bioethics Public Seminar Series continues this month with a webinar from Center Assistant Professor Megh Marathe, PhD, on “Expedient Classification: Diagnosis in Lived Experience and Medical Practice.” This virtual event is free to attend and open to all individuals. This event will be available as a live broadcast only.

Wednesday, March 22, 2023
1:30-2:30 PM EDT (UTC−04:00)
Zoom webinar registration: bit.ly/bioethics-marathe

This talk examines how doctors and patients distinguish between normal and pathological events through the case of epilepsy. Epilepsy is a chronic illness and disability characterized by recurrent and unpredictable seizures. Seizures are transient events during which people lose control over parts of body-mind function. The talk shows that the diagnostic boundary between seizure and non-seizure events is fluid, dynamic, and porous in lived experience and medical practice. Calling an event a seizure has consequences well beyond treatment, also affecting a patient’s financial stability, social participation, and life aspirations. Hence, doctors and patients take an expedient approach to classifying seizures, informally modifying the very definition of seizure to postpone or avoid severe consequences. Doing so enables doctors and patients to bend rigid classification schemes to suit the complex realities of people’s lives. This work advances scholarship on classification and expertise in information studies, science and technology studies, and disability studies.

Megh Marathe with Spartan helmet graphic

Megh Marathe is an assistant professor in the Center for Bioethics and Social Justice in the College of Human Medicine and the Department of Media and Information in the College of Communication Arts and Sciences at Michigan State University. Marathe’s research seeks to foster inclusion in expert practices and technologies by centering the perspectives of marginalized people. They do this by studying the experiences and practices of multiple stakeholders – doctors and patients, citizens and civic officials – that is, laypeople and professionals, people who are marginalized as well as those in powerful positions, to generate critical theory and practical interventions for inclusive practice and technology design. Marathe adopts an ethnographic approach that is inflected by their computer science training and software industry experience.

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What do clinicians think about using deep brain stimulation to treat obsessive-compulsive disorder in pediatric patients?

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The 2022-2023 Bioethics Public Seminar Series continues next month with a webinar from Center Assistant Professor Michelle T. Pham, PhD, on “Clinician Perspectives on the Potential of DBS for Pediatric Patients with Treatment-Resistant OCD.” This virtual event is free to attend and open to all individuals.

Wednesday, February 15, 2023
1:30-2:30 PM EST (UTC−05:00)
Zoom webinar registration: bit.ly/bioethics-pham

The World Society for Stereotactic and Functional Neurosurgery has argued that at least two successful randomized controlled trials should be available before deep brain stimulation (DBS) treatment for a psychiatric disorder is considered “established.” DBS is currently offered to children ages 7 and older with refractory dystonia under an FDA-humanitarian device exemption. No randomized control trials were conducted – practitioners relied on evidence from DBS use in adults. In addition, accumulated research supports the safety and effectiveness of DBS for obsessive-compulsive disorder (OCD) in adults (Wu et al. 2021).

Approximately 10-20% of children with OCD have treatment-resistant presentations, so it is likely that there will be interest in offering DBS for some children (POTS 2004). Both ethical and empirical anticipatory work is needed to evaluate whether, and if so, under what conditions it might be appropriate to offer DBS in this context. This seminar will present qualitative data from semi-structured interviews with 24 clinicians with expertise in this area regarding: (a) acceptable levels of evidence to offer DBS in this patient population and (b) institutional policies or protocols needed to effectively provide care for them.

Michelle Pham with Spartan helmet graphic

Michelle T. Pham is an assistant professor in the Center for Bioethics and Social Justice and the Department of Medicine in the Michigan State University College of Human Medicine. She conducts research in the interdisciplinary field of Neuroethics and connected issues in the Philosophy of Science. Some recent topics include promoting post-trial care for patient-participants in experimental brain implant studies and decision-making in the context of pediatric deep brain stimulation. Pham also researches ways to promote engagement with patient-participants who contribute to neuroscience and neurotechnology research; and she has raised the concern that patient-participants in these brain implant studies may be exploited.

Can’t make it? All webinars are recorded and available in our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our email list.

Jennifer McCurdy presents at Michigan State Medical Society 26th Annual Conference on Bioethics

Jennifer McCurdy with Spartan helmet graphic in bottom right corner.

Center Assistant Professor Jennifer McCurdy, PhD, BSN, MH, HEC-C, presented “Beyond Patient Behavior: Using Structural Competency to Create Health Equity” at the Michigan State Medical Society (MSMS) 26th Annual Conference on Bioethics: Contemporary Challenges in Clinical Bioethics in November. McCurdy’s presentation explored the social, political, and economic contexts that act as barriers to patients care and impede physicians’ ability to effectively treat them.

McCurdy asked those in attendance the following questions: Have you ever experienced moral distress or frustration associated with the medical “system?” Have you ever been unable to treat a patient for whom treatment exists, based on factors that are out of your control? What were those factors?

Using a case example, McCurdy discussed factors that determine the health status of an individual, such as behaviors, cultural norms, and biology. She also discussed social determinants of health, such as poverty, inadequate or no housing, lack of access to education, and lack of access to healthcare. McCurdy also outlined structural determinants of health, pointing to social structures, political structures and policy, and economic structures and policy—the “causes of the causes.”

How can physicians help? They are uniquely positioned in spaces that connect the medical world and the patients’ worlds, where they can observe recurrent barriers to care. They can work to create change at individual, interpersonal, and institutional levels. McCurdy also outlined how physicians’ involvement in the community, in policy, and in research can create structural change and therefore improve health equity.

Related reading

  • Neff J, Holmes SM, Knight KR, Strong S, Thompson-Lastad A, McGuinness C, Duncan L, Saxena N, Harvey MJ, Langford A, Carey-Simms KL, Minahan SN, Satterwhite S, Ruppel C, Lee S, Walkover L, De Avila J, Lewis B, Matthews J, Nelson N. Structural Competency: Curriculum for Medical Students, Residents, and Interprofessional Teams on the Structural Factors That Produce Health Disparities. MedEdPORTAL. 2020 Mar 13;16:10888. doi: 10.15766/mep_2374-8265.10888. PMID: 32342010; PMCID: PMC7182045.
  • Gruen RL, Campbell EG, Blumenthal D. Public roles of US physicians: community participation, political involvement, and collective advocacy. JAMA. 2006 Nov 22;296(20):2467-75. doi: 10.1001/jama.296.20.2467. PMID: 17119143.

By Liz McDaniel

New book from Leonard Fleck available for free through August 26: ‘Bioethics, Public Reason, and Religion’

Leonard Fleck

Bioethics, Public Reason, and Religion is a new book from Center Professor Leonard M. Fleck, PhD. Published this month by Cambridge University Press as part of the Cambridge Elements Bioethics and Neuroethics series, the book is available to read online for free until August 26.

Fleck explores Rawlsian political liberalism, the limits of religious integrity, and examines the issues of physician aid-in-dying, the use of embryos in medical research, abortion, and the artificial womb.

Bioethics, Public Reason, and Religion book cover
Image description: The book cover of Bioethics, Public Reason, and Religion by Leonard M. Fleck has art that is a light blue abstract painting with tones of yellow and red. Image courtesy of Cambridge University Press.

“Given the United States Supreme Court Dobbs decision, this volume is especially timely since it is doubtful that the Dobbs decision could pass the public reason test—though readers are free to disagree with that conclusion,” said Fleck.

Summary: Can religious arguments provide a reasonable, justified basis for restrictive (coercive) public policies regarding numerous ethically and politically controversial medical interventions, such as research with human embryos, pre-implantation genetic diagnosis, or using artificial wombs? With Rawls, we answer negatively. Liberally reasonable policies must address these controversial technologies on the basis of public reasons accessible to all, even if not fully agreeable by all. Further, public democratic deliberation requires participants to construct these policies as citizens who are agnostic with respect to the truth of all comprehensive doctrines, whether secular or religious. The goal of these deliberations is practical, namely, to identify reasonable policy options that reflect fair terms of cooperation in a liberal, pluralistic society. Further, religious advocates may participate in formal policymaking processes as reasonable liberal citizens. Finally, public reason evolves through the deliberative process and all the novel technological challenges medicine generates for bioethics and related public policies.

Print copies of the book are also available for pre-order. The volume is a slim paperback, clearly written, and accessible for an undergraduate bioethics course that addresses several of these controversial bioethics issues as matters for public policy decision-making.

New Hastings Center special report on anti-Black racism in bioethics

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).

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 recent 40 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.

The full report can be accessed for free via Wiley Online Library.

Bioethics for Breakfast: Aducanumab, Alzheimer’s: Having That Conversation

Bioethics for Breakfast Seminars in Medicine, Law and Society

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.

Related items

About the speakers

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.

Bioethics for Breakfast: Social Determinants of Elders’ Health

Bioethics for Breakfast: Seminars in Medicine, Law and Society

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.

About the speakers

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.

Police violence as a reproductive justice issue

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This post is a part of our Bioethics in the News series

By LeConté J. Dill, DrPH, MPH

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.”

Photo of a black child with their head and hand resting on the exposed pregnant belly of their parent.
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?

Photo of LeConté Dill

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.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Continue reading “Police violence as a reproductive justice issue”

Counting Women of Color: Being angry about “missing white woman syndrome” is not enough

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This post is a part of our Bioethics in the News series

By Monica List, PhD

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.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Monday, November 8, 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.

Continue reading “Counting Women of Color: Being angry about “missing white woman syndrome” is not enough”