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Listening to Patients

Rageshri Dhairyawan, Reflect, Collaborate, and Listen, 405 Lancet 536 (2025).

Dr Rageshri Dhairyawan calls on health professionals to improve their capacity to listen to patients. Published on the front page of the Lancet in February 2025, NHS consultant and researcher Dhairyawan’s essay ‘Reflect, Collaborate and Listen’ draws on some of the key ideas set out in her book: Unheard: the Medical Practice of Silencing (2024).

I grew up in a small village in England, which boasts its own surgery thanks to my father and his practice. There was a strong pastoral element to his and his team’s clinical roles. My childhood recollection of the waiting room was of people chatting and laughing, leaving me wondering if there was anything the matter with them at all. Sometimes, patients would come to the house and seek advice in our front room. Once or twice, they even brought poorly animals. Sometimes he’d receive a phone call and rush out to a remote farm because he’d likely arrive before the ambulance. By listening to his patients and building relationships with them and their families over time, he gained trust and respect, and was, in turn, listened to.

Today the “family doctor,” whose role it is to understand the patient in the context of their family relationship, is less prevalent. As patient demand has increased, families and demographics changed, services expanded, care specialization fragmented, and appointment times shrunken, the very notion of the family doctor has retreated. Whilst there is much to celebrate in the development of primary care in the UK, the reduced capacity, and indeed willingness to listen, has left a gap.

Dhairyawan argues that this gap extends across the National Health Service (NHS). A root cause, she suggests, is a power imbalance between clinician and patient. This is sometimes the result of prejudice flowing from racism, sexism, ageism and other forms of bias. Nowhere is this clearer than in maternity care. MBRRACE-UK (Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries) reports have detailed ‘shocking racial and socioeconomic inequalities’ in deaths of women pre-, during, and post-childbirth in the UK and Ireland. Following a raft of recent reports criticising failures to listen and act on women’s concerns, it remains clear that ‘The NHS is still not listening hard enough to families on maternity care’.

Dhairyawan does not duck the difficult question of what needs to be done. Action starts with medical education, where students should be taught the value of listening to patients and equipped with the necessary skills. This would help counteract the biomedical model, which separates the patient from their social context and focuses exclusively on fixing the broken body. Students also need to be better equipped to deal with uncertainty: to acknowledge and share uncertainties rather than gloss over them or omit them because they cannot provide comprehensive answers.

In practice, clinicians should be more reflective about their listening practices and make it a part of their continuing professional development. The patient’s voice, meanwhile, should be elevated and amplified. In health services, we must prioritize the space for private conversations. In primary care, for example, Dhairyawan recommends that patients should be free to choose to sacrifice swifter access to any doctor in preference for continuity with their chosen doctor, if that is their priority.

Dr Dhairyawan’s book and article are timely. Several policy reports have referred to the devastating impacts that can flow from a failure to listen to patients. This was evident in the recent Infected Blood Inquiry final report into the worst treatment disaster the NHS has seen. Tens of thousands of people were infected with HIV and hepatitis C when they received infected blood and blood products in the 1970s, 80s and 90s. In his final report, the Chair, Sir Brian Langstaff set out lessons for the future. One was that “communication means listening: it is more talking with than talking to.” He went on to say that “there can be no proper consent without adequate communication, in particular of the risks and alternatives, but also so that the care of the patient respects the patient’s ownership of their own body and life.”

Listening to patients should not be confused with simply doing what they say. Clinicians should not offer treatment that is not clinically indicated and in the patient’s interests. What it does mean, as Dhairyawan so eloquently expresses, is that the combination of the clinician’s clinical expertise and the patient’s expertise of their illness and body, will lead to better outcomes and patient satisfaction.

This balance between professional expertise and patient autonomy is reflected in case law on informed consent. In Montgomery v Lanarkshire Health Board [2015], the UK Supreme Court required medical professionals to provide information to patients on material risks and reasonable alternatives that empowers patients to make their own informed choices.

Cite as: Emma Cave, Listening to Patients, JOTWELL (June 9, 2025) (reviewing Rageshri Dhairyawan, Reflect, Collaborate, and Listen, 405 Lancet 536 (2025)), https://health.jotwell.com/listening-to-patients/.

Strict Liability for Unreasonable Harm: Aggregating Liability to Restore Compensation and Deterrence to Medical Malpractice Litigation

Omer Pelled, Aggregating Liability for Medical Malpractice, 22 Yale J. Health Pol’y L. & Ethics 134 (2024).

The American system of medical malpractice has long been criticized for failing to achieve either of the two primary goals of tort law: compensating victims or deterring misconduct. For victims of medical error, “[t]he malpractice liability system provides little compensation overall, and what infrequent compensation it provides it does so inefficiently with high transaction costs.” As for deterrence, researchers have found “no association between greater risk of malpractice liability and health care quality.” There has been no shortage of proposals to replace the system with potentially more effective alternatives, ranging from the use of specialized health courts to broader systems of enterprise liability to a wholesale replacement of the system with a no-fault compensation regime. In a provocative new article, Aggregating Liability for Medical Malpractice, Omer Pelled of Bar Ilan University School of Law enriches the debate by introducing a novel new approach he calls “strict liability for unreasonable harm” (SLUH), a creative mashup of negligence and strict liability that shifts the focus from discrete medical injuries to the pattern of outcomes resulting from a provider’s acts and omissions over a specified period of time.

Pellad uses the problem of hospital-acquired infections as a paradigmatic case for the application of SLUH. Some level of such infections is expected even in hospitals that engage in reasonable infection-control measures, but a higher level will occur in hospitals that fail to exercise due care. Suppose that a non-negligent hospital of a particular size and with a particular patient profile can be expected to have 100 infections per year, but one such hospital experiences 150 infections over the same time period. Under existing malpractice law, a patient seeking damages would have to show that her infection was more likely than not one of the 50 that would not have occurred had the hospital acted more reasonably. Because this is often an impossible hurdle, few injured patients even seek compensation through the tort system, and the hospital is therefore under-incentivized to invest in reasonable care. Pelled argues that the hospital’s liability should instead be established in the aggregate for all 150 affected patients, without any need to determine precisely how each of those injuries happened to arise. Each patient would be entitled to partial compensation based on the proportion of the total harm caused by the hospital’s failure to exercise reasonable care over the relevant time period, which in this example would be 50/150, or 1/3 of the total amount.

The SLUH approach is “strict” in that it results in the payment of some damages to all injured patients, regardless of whether their individual injuries were more likely than not the result of the hospital’s negligence. However, on an aggregate level, it is consistent with a negligence-based system because it requires the hospital to pay only for that portion of the harm that could have been avoided with the exercise of reasonable care. The system is loosely similar to other proportional approaches in tort law, including the loss-of-chancedoctrine and market share liability, which also dispense with traditional approaches to breach and causation as a means of ensuring that defendants do not escape liability for the increased risks they impose on the world.

An advantage of this system is that it does not depend on plaintiffs’ ability to uncover evidence of misconduct in their individual cases. As such, hospitals would no longer have an incentive to hide information about errors or to adopt costly and potentially harmful defensive tactics such as ordering unnecessary tests and procedures in an effort to minimize their litigation risk. (Physicians report that they frequently engage in such practices, although “the true costs of defensive practice, and the extent to which it is driven specifically by litigation risk rather than by broader dynamics, remain somewhat unclear.”) In addition, the approach avoids the problem of underenforcement inherent in the existing medical malpractice system; like class action lawsuits, all it would take is one patient to bring a lawsuit to call into question all the harms experienced in the hospital over the time period in question. Once the share of those harms attributable to the hospital’s lack of due care has been established, anyone who suffered harm during that period would be entitled to seek their proportionate share of compensation, even if they were not involved in the initial litigation establishing the hospital’s fault.

Initially, Pelled argues, legislators could experiment with his proposed approach by giving hospitals the opportunity to opt-into it as an alternative to standard malpractice liability. In addition, its use could be limited to hospital units that already report information about adverse events to surveillance registries, which would facilitate comparisons between the level of injuries in one unit with those of similarly situated units over time. Ideally, he argues, the system would operate alongside an insurance system that provides compensation for any injuries not attributable to the hospital’s negligence, which would combine with the partial compensation granted by the SLUH approach to make patients whole. Pelled argues that this insurance system should not only compensate patients for non-negligent harm but also provide subsidies to hospitals that manage to bring injuries below the level that would be expected if reasonable care were provided. These “negative damages” would ensure that hospitals neither under-nor over-invest in harm-prevention methods (i.e., that they take only those precautions that would be taken by reasonably prudent hospitals), even if courts sometimes make mistakes in determining the proportion of harm attributable to the hospital’s lack of reasonable care.

While Pelled develops the case for the SLUH approach in the context of medical malpractice, he argues that it could also apply to other contexts in which the goals of compensation and deterrence are not well served by the existing negligence regime. He identifies three conditions that would make the use of this approach appropriate: “(i) the total harm across cases is verifiable; (ii) it is possible to determine the reasonable harm for the injurer across time; and (iii) the injurer causes enough harm to justify a statistical inference.” As an example of such a context, he points to “artificial intelligence (AI) devices and products which, despite reducing accident rates, are involved in accidents that reasonable humans would avoid.”

The defects in our existing system of medical malpractice, while widely acknowledged, have long eluded effective solutions. Pelled’s analysis offers fresh insights into this intractable problem and is worth careful attention not only by health law scholars but by anyone with an interest in tort liability and alternative compensation regimes.

Cite as: Carl Coleman, Strict Liability for Unreasonable Harm: Aggregating Liability to Restore Compensation and Deterrence to Medical Malpractice Litigation, JOTWELL (May 9, 2025) (reviewing Omer Pelled, Aggregating Liability for Medical Malpractice, 22 Yale J. Health Pol’y L. & Ethics 134 (2024)), https://health.jotwell.com/strict-liability-for-unreasonable-harm-aggregating-liability-to-restore-compensation-and-deterrence-to-medical-malpractice-litigation/.

The Trouble With Health

As shown by the renewed backlash against health insurers, this time unleashed by the United Healthcare CEO’s killing in Manhattan, there seems to be something about health. Those of us who work in health law likely chose this field because we’ve always known that, indeed, there is just something about health. But what exactly is it? What makes it so special, so intractable, so compelling, such a lightning rod? Elizabeth Barnes‘ new book, Health Problems, takes this question squarely on, and concludes that we might never solve the mystery, even if we must continue to probe.

The signature puzzles she picks out are 1) the relationship between health and well-being, 2) the relationship between health’s objective nature and its subjective aspect, and 3) the relationship between health and disability. These puzzles are central to our work. They loom over so much of our scholarship that I am constantly bracketing these questions or relying on rough and provisional stand-ins. My perverse skirting of these central matters so as not to get unproductively mired allows me to make at least some progress on other questions that demand urgent answers. I’ve always felt that perhaps in making progress on adjacent questions, we have a chance of shedding light on these enduring puzzles too. Elizabeth Barnes helps locate this approach: first by mapping the bracketed space through her clean no-nonsense chapters (a division of labor that frees us to tackle other tasks) but also by providing perhaps a rationalization for approaching these questions a bit sideways.

The explanation lies in her final chapters, where she suggests a posture of “ameliorative skepticism.” It strikes me as a useful strategy for how to approach certain topics that feature a heavy dose of social construction (gender, others have suggested, is another) and that may be so close to us that it’s hard to get any distance from the mirror to see what we have made of ourselves. Because healthcare and public health are key social practices through which we work out how it is to be alive with one another and what that entails, these practices can’t help being sites of irreducible contestation responding to our many requirements. Part of the mystery and contest is over the extent to which our being alive resides in the body and the extent to which it transcends the body. Small wonder then, that the concept we’ve wrought through these practices is neither unified nor coherent. Barnes cautions against expecting otherwise.

My takeaways from her discussion of the first puzzle include a resolve to temper my habit of letting health stand in for flourishing. Barnes reminds us of what is at stake when I conflate the two. For one, overvaluing health impoverishes our understanding of human flourishing, as the narrow tech-culture trend of biohackingillustrates. Moreover, such elision can undervalue the richness and fullness of the lives of those with serious disabilities (although the two categories of disability and health loss come apart as well). Finally, Barnes analogizes loss of health to the experience of grief in a way I found helpful. Part of being alive is coping with the horizon of one’s frailty and mortality, with the awareness that at any point one could no longer be alive or could find oneself “navigat[ing] the world in a body that falls outside…how we expect bodies to function” (169). So, any picture of human flourishing or wellbeing must save room for loss of health as well.

On the quasi-objective, quasi-physiological nature of health, Barnes acknowledges that “sometimes things like health are normatively significant for reasons independent of how you feel about them” (P. 97). At the same time, health is inescapably subjective because it is “partly constituted by our reactions” (P. 97). She reminds us of this subjective phenomenology, including the primal feeling of being “‘at home’ in your mind and body” and the flip-side experience of illness as constant “aware[ness] of how you feel,” your vulnerability, your instability, and your “constantly interrogating whether you can accomplish normal and everyday tasks” (P. 52). This subjective distress cannot be ignored, since the urgency of how badly a person feels is in no small part what we are trying to address when we tackle people’s health problems, rather than just the biomarkers, functional limitations, or the like. Very little in health justice can be addressed without understanding how we’ve distributed suffering, how we’ve constructed suffering, and how people have internalized their expectations of suffering, a point to which I will return.

Third, Barnes emphasizes that disability and health come apart but that the avoidance of medicalization and the related social view of disability as “mere difference” is not adequate. Barnes insists we must be able to properly acknowledge health needs and health loss and to adequately recognize healthcare as one of the most important priorities for what we owe one another in case of disability, even as we celebrate the full, flourishing, and indeed healthy lives of people with disabilities.

Barnes then dwells quite a bit on a third side of the triangle, the relationship not between health and disability but between wellbeing and disability. It turns out that wellbeing is not necessarily lower for people with what she calls “paradigm” disabilities (like spinal cord injury, achondroplasia, or blindness) (P. 142). But for another set of conditions, disability and reduction in wellbeing are more closely correlated. The conditions she identifies as associated with poor wellbeing are “non-specific chronic pain conditions (such as chronic back pain, headache disorders, or fibromyalgia) and mental health conditions (such as generalized anxiety or depression)” (P. 142). These are, in fact, “the most common reasons that people in Western countries do things like seek disability benefits or ask for workplace accommodations.” And these “tend to be substantially correlated with reduced self-reported quality of life” (P. 142).

Barnes includes this discussion as a qualifier and an additional dimension of complexity in her picture, frustrating conceptual closure. Indeed, this gap in wellbeing effects for different types of disabilities presents challenges for many accounts of health, even, Barnes acknowledges, her own (P. 176). It also opens out into a new kind of inquiry beyond Barnes’ book. It puts me in mind of Mary Crossley’s recent book, Embodied Justice: Race, Disability and Health. Crossley’s is part of a literature that frontally examines how the distribution of disability serves among the cumulatively layered and mutually reinforcing forms of adversity (poverty, trauma, simultaneous unemployment and overwork, carcerality, disruption of family support structures, housing instability, the built environment, etc.) that map onto race and perform a familiarly patterned sorting of life chances. To the extent that disability functions as part of the reinforcing systems of disadvantage and immiseration, it is also a site of struggle and resistance over this apparatus that is the underside of our systems of competitive, disciplinary, “meritocratic” allocation. The category of “disability” for the conditions most implicated in this allocation might be showing up precisely because of its relationship with suffering and the gatekeeping of opportunities to flourish. Coherence and unity are elusive because this too is at stake when we fight over the scope and meaning of health. This is the kind of “messy” thread that Barnes does not address, but which her ameliorative skepticism allows us to pull harder, rather than lop off.

Cite as: Christina S. Ho, The Trouble With Health, JOTWELL (April 10, 2025) (reviewing Elizabeth Barnes, Health Problems: Philosophical Puzzles about the Nature of Health (2023)), https://health.jotwell.com/the-trouble-with-health/.

The Overlooked Harms of Inaccurate and Biased Medical Records

Professor Alice Abrokwa’s article, Too Stubborn to Care for: The Impacts of Discrimination on Patient Noncompliance, focuses on a rarely acknowledged source of bias in the healthcare system: medical records. Although this bias may not be easily visible to the public, medical records can significantly impact the medical care that individuals receive, as well as eligibility for government benefits and the size of medical malpractice awards. 

Professor Abrokwa begins her article by concisely telling the history of Elijah McClain’s interactions with law enforcement and emergency medical personnel, where he was labeled a “non-compliant person” during the interactions that eventually led to his death. As part of this story, she provides a quote from the City of Aurora’s investigative reportand recommendations in the aftermath of Elijah McLain’s death: “[I]mplicit biases can lead medical professionals to perceive Black patients as noncompliant and more resistant to pain, which can impact decisions regarding care to the detriment of Black Patients.” From there, she briefly outlines other instances where the labeling of patients in healthcare settings as “noncompliant” had significant detrimental impacts on their healthcare.

Part I of the article, “Situating the Analysis of (Non) Compliance,” provides practical and scholarly background on the meaning of the word “compliance,” particularly as it relates to Black people and other people of color in the United States. Professor Abrokwa explains that she extends the analysis of other scholars to “argue that norms about race, gender, and (dis) ability operate together to mark the difference between a ‘compliant’ and ‘noncompliant’ patient.” (citation omitted). In doing so, she shows that many individuals, regardless of race, do not “comply” with medical treatment. For example, many patients do not book “follow-up appointment[s] as soon as suggested or perfectly adher[e] to a recommended diet.” Yet, for patients of color, non-compliance can have more significant detrimental health outcomes as outlined in Part IV of the article.

Part II of the article, “Understanding the Stereotypes Underlying Noncompliance Biases and Providers’ Perceptions,” draws from Professor Kimberlé Crenshaw’s intersectionality framework in particular. In Part II.A, Professor Abrokwa “identifies the three stereotypes about Black people in the United States” that she argues are “most at work in driving perceptions of Black patients as noncompliant.” Professor Abrokwa then provides context evincing these stereotypes using media stories, scholarly literature, and historical accounts. In Part II.B, Professor Abrokwa cites to numerous studies demonstrating how racial stereotypes translate into the use of certain terms in patient notes. Moreover, Professor Abrokwa shows how just the use of a biased term in a patient’s medical records will then be transmitted to subsequent health care providers who, even though they may not be biased in the same way as the preceding medical provider, can still perpetuate that bias.

Part III, “Understanding Patients’ Reasons for Noncompliance,” explains why noncompliance is often justifiable and potentially evidence of healthcare providers’ failures, or systemic failures, not patients’ failures. Part III.A notes that patients may wish to undertake another course of action for family reasons or personal politics. Part III.B reminds the reader that in the U.S. health care system, patients may be noncompliant because following their provider’s recommendations is cost prohibitive. Part III.C. explains how provider communication failures can lead to noncompliance, whether the communication failure is about what prescribed medications a patient should undertake or patient education more broadly. Part III.D shows how “[a] patient’s perception that their provider is biased against them can…impact adherence to that provider’s recommendations” including through “reduced use of medical services.” Part III.E, “Medical Mistrust” discusses the many reasons why individuals might be suspicious of the healthcare setting, referencing notable instances of racial discrimination in the health care setting such as the federal government’s mistreatment of Black men in Tuskegee, Alabama. Moreover, Professor Abrokwa cites to Professor Nancy Krieger’s 2022 stunning reminder “…that everyone who is age 57 and older in this country was born when Jim Crow was legal.”

In Part IV, Professor Abrokwa explains how noncompliant patients can lose disability benefits, suffer reputational damage in benefits cases, and suffer potential reductions of damage awards in tort cases. In the next part, she provides solutions to minimize these harms. Part V.A. provides practical solutions that can reduce labels of “noncompliance” and render medical care more accessible in the United States, such as structural changes, hiring more providers of color, and hiring more providers with proficiency in multiple languages. She also acknowledges the limitations of these solutions, even referencing a study that found primary care providers would need “26.7 hours per day to see an average number of patients” in compliance with national guidelines. Part V.B focuses on the role of legal advocacy, including a description of one study, which found that “[m]ore than 1 in 5 patients perceived mistakes in their notes, judging more than 40% of them as serious.” In light of the role of medical records in litigation and benefits determinations, it is important that healthcare providers provide accurate notes. Lawyers can aid patients in requesting amendments to their health care records as that “process… can be time-consuming, resource-intensive, and emotionally taxing for patients to do on their own.” Moreover, Professor Abrokwa encourages attorneys to file complaints or pursue private litigation as appropriate and additionally advocates for attorneys, administrative law judges, and other judges to “carefully consider” why a patient might be noncompliant, in light of the reasons provided in Part III. She also encourages the Social Security Administration to issue guidelines that are less punitive of noncompliance.

The article brings attention to a significant but overlooked issue. Many individuals do not pay attention to their medical records after a provider visit, especially the section of their health record containing the summary of their visit with their providers’ notes. For those who do examine their own health records they may not realize that these provider notes exist not only for patient history but also as tools for physicians who have been counseled to write those notes in a way that minimizes the likelihood of lawsuits against them or more successful litigation outcomes as physicians. Yet, for patients, their providers’ notes, which are difficult to change, can be biased and harmful. Moreover, beyond legal outcomes, as Professor Abrokwa noted at the outset of her article, “[n]ot everyone survives being seen as non-compliant.”

Cite as: Myrisha Lewis, The Overlooked Harms of Inaccurate and Biased Medical Records, JOTWELL (March 10, 2025) (reviewing Alice Abrokwa, Too Stubborn to Care for: The Impacts of Discrimination on Patient Noncompliance, 77 Vand. L. Rev. 461 (2024)), https://health.jotwell.com/the-overlooked-harms-of-inaccurate-and-biased-medical-records/.

Euthanasia Review Report: What is Happening in The Netherlands?

Commissions Régionales De Contrôle De L'euthanasie, Jaarverslag (2023).

The Regional Euthanasia Review Committees (RERCs) in the Netherlands are required by statute to report annually on euthanasia and physician-assisted suicide (PAS) procedures carried out in the Netherlands. The general conclusion of the latest periodic evaluation was that euthanasia and PAS procedures are generally carried out with great care. It also concluded that the degree of willingness among physicians to report euthanasia remains high. Apart from these general observations, the report provides valuable information about euthanasia and PAS practice in the Netherlands, as well as how RTEs fulfill their statutory task of reviewing notified cases.

Understanding the Dutch practice requires some further explanation of the legal setting, i.e. Termination of Life on Request and Assisted Suicide Act (‘the Act’). Though euthanasia and PAS remain criminal offenses, physicians are released from liability if the statutory due care criteria are met and the act is reported to an RERC. Requests for euthanasia or PAS typically come from patients experiencing unbearable suffering with no prospect of improvement, who see these options as the only escape. All requests for euthanasia or PAS must be made earnestly and with full conviction. However, patients do not have an absolute right to euthanasia, and doctors have no duty to accept the patient’s request to perform it.

Doctors must report all unnatural deaths to the municipal pathologist. In cases of euthanasia or PAS, the pathologist notifies an RERC, which is comprised, at a minimum, of medical doctors, ethicists, and legal experts. The committee assesses whether the physician has fulfilled the statutory due care criteria. These criteria require the physician to: (i) be satisfied that the patient’s request is voluntary and well-considered; (ii) determine that the patient’s suffering is unbearable, with no prospect of improvement; (iii) inform the patient about situation and prognosis; (iv) confirm that there is no reasonable alternative for the patient’s situation; (v) ensure that an independent physician has examined the patient, and (vi) exercise due medical care and attention in the process of terminating life. Physicians who fail to meet any of these criteria are subject to prosecution. The review committee procedure ensures transparency and consistency in reporting and evaluating cases.

The 2023 report shows an increase in notifications of cases of euthanasia and PAS (9,068 compared to 8,200 in 2022; 7,666 in 2021). Cases involved patients with cancer (5,105); neurological disorders such as Parkinson’s disease, multiple sclerosis and motor neuron disease (605); cardiovascular disease (393); pulmonary disorders (340); or a combination of conditions, usually somatic (1,599) (P. 13). Though cancer was the most common cause, there were also instances of euthanasia or PAS based on mental suffering and dementia causing unbearable suffering with no prospect of improvement. There were 328 cases involving patients in early stages of dementia who still had insight into their condition and its symptoms, such as spatial and temporal disorientation and personality changes. An additional eight notifications involved patients in an advanced stage of dementia who no longer had decision-making capacity and were no longer able to communicate meaningfully regarding their request. In these cases, the patient’s consent was based on an advance directive (P. 13). In addition, 138 euthanasia notifications concerned patients whose suffering was (largely) caused by one or more psychiatric disorders. The report stressed that physicians must exercise particular in these situations (P. 15).

Multiple geriatric syndromes – such as sight impairment, hearing impairment, osteoporosis and its effects, osteoarthritis, balance problems, or cognitive decline – may cause unbearable suffering without prospect of improvement. These syndromes generally develop in older age and can lead to an accumulation of symptoms. In conjunction with the patient’s medical history, life history, personality, values, and stamina, they may give rise to suffering that the patient may experience as unbearable and without prospect of improvement (P. 15).

If both members of a couple make simultaneous requests for euthanasia and both requests are granted, the RERCs register this as ‘double euthanasia’. This occurred 33 times in 2023 (66 notifications). In each case, the due care criteria set out in the Act must be satisfied separately. Each partner must be examined by a different independent physician to safeguard the independence of assessing their requests (P. 20).

In five of the notified cases in 2023, the RERCs found that the physician who performed the act did not comply with all the due care criteria. In one of these cases, the committee found that the independent physician was not truly independent because he was registered as a patient in the practice of the general practitioner who performed the euthanasia. In three cases, the committee found that the physician had not exercised the necessary particular caution concerning a patient whose suffering was caused by a psychiatric disorder or a combination of a somatic condition and a psychiatric disorder. In another case, the committee found that the physician had not exercised due care because he left the medication with the patient before performing euthanasia (P. 20).

What makes the report interesting to read is the practice of euthanasia and physician-assisted suicide in the Netherlands, the number of reported cases, and examples of which physicians are struggling with. That counts particularly for instances of euthanasia or PAS based on mental suffering and dementia causing unbearable suffering. Although the Act was initially aimed at somatic suffering, gradually, its scope has extended towards other instances, causing unbearable suffering with no prospect of improvement.


© Nature of Conditions, Annual report 2023 Regional Euthanasia Review Committees

Cite as: André den Exter, Euthanasia Review Report: What is Happening in The Netherlands?, JOTWELL (February 13, 2025) (reviewing Commissions Régionales De Contrôle De L'euthanasie, Jaarverslag (2023)), https://health.jotwell.com/euthanasia-review-report-what-is-happening-in-the-netherlands/.

Using Private Law to Combat Influencers’ Health Misinformation

Leah Fowler, Max Helveston, & Zoë Robinson, Influencer Speech-Torts, 113 GEO. L. J. __ (forthcoming, 2025), available at SSRN (August 22, 2024).

The spread of disinformation is one of the most pressing problems facing society today. Lawmakers, policymakers, and researchers have focused on how disinformation disrupts political discourse and undermines democratic processes, threatens global security by contributing to the spread of extremist ideologies, furthers social and political polarization, and more. But as Leah Fowler, Max Helveston, and Zoë Robinson describe in their forthcoming article, Influencer Speech-Torts, it can also harm people’s health. (See also the Surgeon General’s Report, Confronting Health Misinformation.) They take on the specific problem of social media influencers providing health advice that causes their followers injury or even death.

Many of us might be thinking of COVID-19 examples, like how people may have ingested bleach and other disinfectants recommended by influencers and faced serious health consequences. But as Fowler, Helveston, and Robinson point out, the problem is pervasive, even outside the pandemic context. Consider, for instance, people with cancer who avoid evidence-based treatments because they become convinced that a particular diet or detox will cure their cancer, or influencers who promote extreme weight loss methods that, when followed, cause serious health harms.

In a world where content moderation, consumer protection laws, and other solutions have not solved the problem, the authors turn to private law. They argue that influencers should be held liable in negligence when they spread health misinformation to their followers that could foreseeably result in injury.

The article is well-written and convincing. Part I describes the influencer economy and how influencers make money from disseminating medical misinformation. The authors define influencers as “content creators who share information for commercial gain.” (P. 37.) They explain why influencing is different from advertising and describe the intense“parasocial relationship” that some individuals form with influencers, making them particularly susceptible to influencers’ advice. Indeed, the authors make the important point that influencer health misinformation exacerbates health inequity, as it is more likely to negatively impact those with limited access to healthcare professionals who could combat misinformation. Part I also explores why existing mechanisms are insufficient to compensate for influencer-driven physical harms.

Part II lays out the authors’ proposed solution. It argues that influencers should owe a duty of care to their followers and that public policy supports the imposition of a duty. Fowler, Helveston, and Robinson wrestle with an issue of first impression, as courts have not yet imposed a duty on influencers to avoid sharing health misinformation. But they argue that under traditional doctrinal approaches, an influencer should owe a duty to their followers. The nature of the influencer-follower relationship, being “fiduciary-like,” further strengthens the claim. Followers rely on the advice of influencers and assume they have followers’ best interests at heart, while the influencer maximizes commercial gain. The authors also offer three convincing policy rationales to support the imposition of a duty: “the social inutility of health misinformation, the potential for influencer duties to prevent disproportionate harms against marginalized populations, and the reduction in negative externalities that result from influencer duties.” (P. 36.)

The final part takes on the First Amendment and argues that free speech rights should not bar tort recovery for physical harm. The authors argue that influencer health misinformation should not be considered “covered speech” under the First Amendment because it is misleading commercial speech or because it should be deemed a new category of uncovered speech. In the alternative, regardless of how it is categorized, they argue that where the speech causes physical harm, the interest in remedying that harm should always outweigh speech rights for constitutional purposes. (Notably, the authors cabin their arguments to physical harm, and do not include economic and reputational harms.)

In sum, followers who suffer physical harm, because they took harmful health advice from an influencer, should be able to sue that influencer under the law of negligence and recover for their injury.

Followers, of course, face additional hurdles in bringing a successful claim beyond those that are the primary focus of the paper, including difficulty accessing the court system at all, proving that advice is indeed “misinformation,” establishing causation, and proving damages. But it might not take a flood of successful claims for the deterrence value of these negligence claims to still be impactful, which is part of the appeal of this solution.

Further, I see Influencer Speech-Torts as an important contribution to a larger problem in our field—namely, how to address areas where the market does not provide patients and consumers reliable signals of safety and efficacy, and where regulatory oversight is also non-existent or insufficient. This category arguably includes surgical techniques and medical procedures, dietary supplements, off-label use of drugs, complementary and alternative medicine, and more. Getting the balance right between patient autonomy, fostering innovation, and protecting people from harm is a perpetual challenge, making the approach in this paper even more provocative.

Cite as: Wendy Epstein, Using Private Law to Combat Influencers’ Health Misinformation, JOTWELL (January 10, 2025) (reviewing Leah Fowler, Max Helveston, & Zoë Robinson, Influencer Speech-Torts, 113 GEO. L. J. __ (forthcoming, 2025), available at SSRN (August 22, 2024)), https://health.jotwell.com/using-private-law-to-combat-influencers-health-misinformation/.

Building Trust: Reforming Fraud Laws for a Changing Healthcare System

Katrice Bridges Copeland, Health Care Fraud and the Erosion of Trust, 118 Nw. U. L. Rev. 89 (2023).

Trust between patients and providers, and in the healthcare system at large, is essential for effective care delivery and positive health outcomes. Yet today’s complex healthcare landscape poses significant challenges to cultivating and maintaining this trust. In her thought-provoking essay Building Trust in Health Care Through Regulation and Payment Systems, Professor Katrice Bridges Copeland offers an insightful examination of the government’s crucial role in building and maintaining trust through its dual roles of regulator-enforcer and participant-payer.

Copeland explores the intricate interplay between trust and regulation, enforcement, and payment policies, demonstrating how government actions profoundly shape trust in healthcare. For instance, the ongoing shift towards value-based payment (VBP) models promises to revolutionize healthcare delivery and could be a tool to increase trust as it moves providers away from being rewarded for quantity over quality. But it also introduces new complexities in maintaining trust, particularly as it might incentivize providers to do things like improperly manipulate quality data to maximize compensation. Copeland makes a persuasive case for modernizing the healthcare fraud and abuse laws to address the unique risks posed by VBP and ensure patient trust in the new healthcare landscape.

Copeland’s article is structured in three parts, each addressing a crucial aspect of trust in healthcare. In Part I, she elucidates the two dimensions of this trust: interpersonal trust between patients and providers, and institutional trust in the health care system as a whole. Interpersonal trust is essential for effective diagnosis and treatment, as patients need to feel confident in disclosing intimate health details to their providers. This trust relies on the belief that providers act in patients’ best interests, free from undue financial incentives. Copeland emphasizes that patients often trust their providers implicitly, unaware of when their provider has conflicting financial incentives. Unfortunately, this can lead to patients overtrusting providers and assuming that they act solely in patients’ best interest. Moreover, as Copeland observes, overtrusting patients are ineffective monitors of providers, which increases the risk of fraud.

Institutional trust, on the other hand, relates to the broader healthcare system, encompassing hospitals, insurance companies, and pharmaceutical firms. This trust is crucial for ensuring that patients engage with, and adhere to, medical advice and treatments. Unlike interpersonal trust, institutional trust is built over time and is easily damaged if patients believe institutions are driven by profit considerations rather than patients’ welfare. Unfortunately, Gallup surveys show a significant decline in public confidence in the medical system, from 80% in 1975 to just 38% in 2019.

The combination of patients’ overtrust in their providers and declining institutional trust underscores the critical role that government must play in promoting and safeguarding trust within the healthcare system. In Parts II and III, Copeland explores how the government can effectively address these concerns by combating fraud and reforming payment systems.

Part II delves into the government’s role as regulator-enforcer, examining how healthcare fraud enforcement impacts trust. Copeland provides a comprehensive overview of key laws such as the Anti-Kickback Statute (AKS) and the Physician Self-Referral Law (Stark Law) that target financial incentives that may corrupt medical decision-making. She argues that while these laws can promote trustworthy conditions, their enforcement has been inconsistent. Copeland further explains that their enforcement under the False Claims Act (FCA) shifts the focus from policing conflicts that undermine trust to recovering federal funds.  In particular, the substitution of civil penalties under the FCA for criminal sanctions under the AKS and the Stark Law dilutes the deterrent effect of these laws and does little to address trust erosion.

In Part III, Copeland turns her attention to the government’s role as participant-payer, exploring how different payment systems under Medicare and Medicaid affect trust in healthcare. The discussion begins with a nuanced exploration of how the government’s reliance on fee-for-service reimbursement models incentivizes providers to exploit patients’ belief in their fidelity and increase the volume and cost of services. Moreover, fee-for-service creates opportunities for unscrupulous doctors and institutions to fraudulently bill the government for items and services never received by patients. These fraudulent billing schemes contribute to declining institutional trust by exposing a lack of fidelity on the part of providers. Copeland then shows how the structure and financial constraints of managed care can cast suspicion on providers’ fidelity to patients and damage institutional trust by limiting patients’ choices and subjecting their providers to payer oversight.

Part III concludes with a forward-looking examination of value-based care, a discussion I consider the Article’s most important contribution.  Copeland rightly contends that the government’s shift to value-based payment models has tremendous potential to enhance trust by balancing financial incentives for cost-conscious care with incentives that reward high-quality care and improved patient outcomes.  Yet Copeland also cautions that VBP introduces new fraud risks that could harm trust, such as providers falsifying data on quality measures. She therefore calls for the government, in its role as regulator-enforcer, to proactively develop and rigorously enforce criminal fraud and abuse laws specifically tailored to the VBP context.

In sum, Copeland’s article makes a significant contribution to the field of health law with its nuanced analysis of trust in healthcare. In particular, her examination of how the government’s dual role as regulator-enforcer and participant-payer impacts trust provides crucial insights for policymakers. Particularly valuable is her examination of VBP models and both their potential to enhance trust and the new fraud risks they create. These insights offer critical guidance for government regulators navigating the transition to VBP, emphasizing the need to strengthen patients’ trust in their providers and the larger healthcare system. Failure to address these issues, Copeland warns, could undermine the potential benefits of VBP and further erode patient’s trust.

Cite as: Jessica Lind Mantel, Building Trust: Reforming Fraud Laws for a Changing Healthcare System, JOTWELL (November 21, 2024) (reviewing Katrice Bridges Copeland, Health Care Fraud and the Erosion of Trust, 118 Nw. U. L. Rev. 89 (2023)), https://health.jotwell.com/building-trust-reforming-fraud-laws-for-a-changing-healthcare-system/.

Centering Disability Rights in Challenges to Abortion Bans

Robyn M. Powell, Disabling Abortion Bans, 58 U.C. Davis L. Rev. __ (forthcoming), available at SSRN (April 5, 2024).

In the U.S. Supreme Court’s recent decision in Moyle v. United States, the Court punted (until after the November 2024 election) on the question whether EMTALA (the Emergency Medical Treatment and Active Labor Act) preempts state abortion bans that fail to include an exception for emergency abortion care necessary to protect a pregnant patient’s health. EMTALA is a federal law mandating that hospitals receiving federal Medicare funds provide stabilizing treatment to protect a patient’s health for any individual arriving at an ER with an emergency medical condition. The ongoing litigation in Idaho, and other well-publicized cases in Texas, have spotlighted the public health crisis caused by post-Dobbs abortion restrictions especially with regard to health exceptions. Moyle leaves in place, at least for now, total bans on abortion without EMTALA’s protections in Texas and other states.

In her draft article, Disabling Abortion Bans, Robyn Powell focuses on the impact of stringent abortion bans on people with disabilities. She examines the adverse health effects of narrowly defined health exceptions, particularly on patients with chronic illnesses, including mental health conditions—serious health concerns that have been largely overlooked in litigation over health exceptions. While media attention has been primarily focused on women with urgent pregnancy complications unable to obtain emergency abortion care, less attention has been paid to individuals with chronic conditions or mental health issues who need abortion care but might not qualify for “emergency” abortion care under EMTALA or narrowly crafted health exceptions.

Since the Dobbs decision ushered in a slew of abortion bans across the country, legal scholars have critiqued the unworkablity of these so-called health exceptions—so-called because health exceptions to abortion bans are rarely applied in reality. Scholars have pointed out that these exceptions do not work in practice because they are designed to be vague and to have a chilling effect on health care providers’ willingness to offer abortion care except in the most dire circumstances. Disabling Abortion Bans is a significant contribution to the ongoing debate about health exceptions to abortion bans. In particular, the article shows how bringing disability rights into view could help shape an incrementalist strategy to challenge abortion bans and build a broader coalition between disability rights and reproductive justice advocates. By centering people with disabilities, Powell also underscores the public health harms of abortion bans beyond emergency care, especially emphasizing their disproportionate impact on individuals with chronic physical and mental health illnesses.

The first section of the article sets the stage by describing the public health crisis generated by the post-Dobbs policy landscape. Powell explains how health exceptions that are deliberately circumscribed and ambiguous have created a chilling effect on physicians’ ability to provide standard medical treatment for pregnancy-related health concerns. With this background, the second section argues that these narrow health exceptions disproportionately harm people with disabilities. Powell describes how systemic health disparities lead to higher maternal mortality and morbidity rates among people with disabilities (data shows an eleven times higher maternal mortality rate). Additionally, the chilling effect of vague health exceptions erodes trust in the physician-patient relationship, particularly harmful to disabled individuals who already distrust the medical establishment due to its history of abuse and discrimination against disabled patients.

One important contribution of the article is how it shines a light on the impact of abortion bans on individuals with chronic conditions, extending the discussion beyond emergency medical situations highlighted in the EMTALA litigation. Powell elucidates how women with common chronic conditions such as autoimmune disorders, heart disease, and kidney disease, face substantially increased pregnancy risks and are especially vulnerable to suffering health harms from abortion bans.

Powell also highlights how chronic mental health issues have been overlooked in discussions about the impact of abortion bans on access to health care. In Moyle, several concurring opinions emphasized the Biden administration’s concession that EMTALA does not apply to abortion in cases of mental health emergencies, further segregating and stigmatizing mental health concerns. Throughout the article, Powell carefully marshals public health evidence showing the prevalence of mental health disabilities during the perinatal period. Pregnancy can exacerbate existing mental health conditions and trigger new mental health problems.

To illustrate this point, in the article’s introduction, Powell discusses a case involving a patient with bipolar disorder and postpartum psychosis facing an unexpected pregnancy. This situation would not constitute an “emergency” under EMTALA, but the patient and her doctor believed terminating the pregnancy was necessary for her health. Yet, most health exceptions in abortion bans exclude mental health indications entirely. Powell argues that this “divergence reveals a troubling inconsistency between growing efforts to achieve mental health parity and the unbalanced approach being taken in abortion policy.” (P. 22.) The lack of mental health exceptions in most abortion bans is particularly troubling given the public health evidence Powell recounts, including that at least one in five pregnant people experience mental health issues during or immediately after pregnancy and that mental health conditions are a leading cause of pregnancy-related deaths in the United States. Powell also provides a historical account of the push to exclude mental health as a ground for health exceptions, originating from proposed Congressional bills seeking to ban adults from assisting adolescents traveling for out-of-state abortion care.

In the final sections, Powell analyzes potential legal and advocacy strategies to chip away at draconian abortion bans. First, Powell proposes that narrowly defined health exceptions should fail even under the rational basis standard set by Dobbs. Although this legal theory may not succeed with the current U.S. Supreme Court, developing arguments using the rational basis test is crucial for making incremental changes and laying the groundwork for a longer-term effort to overturn Dobbs. Powell suggests challenges could also be brought under state constitutions, arguing that health exceptions that are too vague and narrow are irrational.

Second, in addition to potential constitutional challenges under rational basis review, Powell also proposes a range of strategies that are both pragmatically incremental and call for a longer term vision to protect both disability rights and reproductive justice. In the short term, she explores expanding and clarifying health exceptions and protecting providers’ good faith medical judgment through statutory reforms. Powell suggests using the Americans with Disabilities Act (ADA) as a framework for a broader understanding of protecting health in the law. She argues that by “integrating [the ADA’s] expansive understanding of disability into abortion exceptions, pregnant people with disabilities would receive more comprehensive protection.” (P. 65.) Powell acknowledges the limits of proposals to broaden and clarify health exceptions—particularly because overmedicalized framings can perpetuate ableism—as well as the need to move beyond a focus on these exceptional abortion cases. Nevertheless, incremental strategies focusing on health exceptions, disability rights, and medically indicated abortions may be necessary steps to provide limited access to abortion care in the short term.

For the long term, Powell emphasizes building coalitions between the disability rights and reproductive justice movements. These movements have historically been in tension regarding abortion, particularly around prenatal genetic testing and disability-selective abortion bans. Powell’s focus on amplifying the voices of people with disabilities in the abortion law health exception debate is an excellent starting point for building coalitions across these two movements. The article’s arguments on the intersection between disability rights and reproductive justice also build nicely on Powell’s earlier work on Disability Reproductive Justice. Powell convincingly argues that “the disability community is uniquely positioned to lead the way” in challenges to abortion bans, and that by “centering the experiences and needs of people with disabilities, advocates can catalyze incremental changes that pave the way for broader systemic reforms.” (P. 69.)

Disabling Abortion Bans is essential reading for scholars and advocates seeking to understand the full public health impacts of post-Dobbs abortion bans beyond the emergency room context. As litigation and scholarly commentary continue to focus on the problems with health exceptions, Powell makes a persuasive case that centering the disability rights framework is a productive way to advance these challenges.

Cite as: Maya Manian, Centering Disability Rights in Challenges to Abortion Bans, JOTWELL (October 28, 2024) (reviewing Robyn M. Powell, Disabling Abortion Bans, 58 U.C. Davis L. Rev. __ (forthcoming), available at SSRN (April 5, 2024)), https://health.jotwell.com/centering-disability-rights-in-challenges-to-abortion-bans/.

A Postmortem on the ACA

Gabriel Scheffler, The Ghosts of the Affordable Care Act, 101 Wash. U. L.Rev. 791 (2024).

The Affordable Care Act (the “ACA”) has had a somewhat tortured existence since its enactment in 2010. In The Ghosts of the Affordable Care Act, Professor Gabriel Scheffler tells the compelling story of the various ways in which this massive piece of social legislation has been scaled back or repealed by either Congress or the courts, and begins to offer an explanation of why the legislation was vulnerable to such attacks. More specifically, the article takes on the conventional wisdom that social programs, once enacted, are incredibly difficult to dismantle—a phenomenon commonly referred to as entrenchment. In place of this traditional story, the article makes the case for “enactment-entrenchment tradeoffs.” Professor Scheffler argues that, at least in the case of the ACA, lawmakers were forced to make the law more vulnerable to future amendment or repeal in order to ensure its passage. The article not only produces a compelling historical account of the ACA’s travails, but also offers important lessons for anyone interested in social policy change through the federal legislative process.

The article begins by cataloging the various post-enactment repeals and retrenchments of the ACA’s original terms. Some of these are well known, such as the Supreme Court decision in NFIB v. Sebelius, which made the Medicaid expansion optional for states. But others have received much less attention outside of health policy circles—such as the repeal of the Cadillac Tax and the Independent Payment Advisory Board. Some lived such a short and inconsequential life that even health policy scholars are likely to have forgotten they were ever included in the first place (I am looking at you, CLASS Act). Seeing these changes catalogued in a single place presents a compelling picture of just how much the ACA has changed between 2010 and the present day.

Professor Scheffler then turns to the primary contribution of the article—exploring why it is that the ACA was so vulnerable to post-enactment attacks. In seeking to answer this question, the article synthesizes the social science and public policy literature along with the author’s original contributions. The primary argument advanced in The Ghosts of the ACA is that it was political compromises that were necessary to ensure enactment of the ACA that directly led to its post-enactment vulnerability.

It is difficult to do justice to the depth of the analysis in The Ghosts of the ACA in this short review, but in my view, one of the most intriguing parts of the article is its consideration of the various ways our political and legal climate have changed, rendering entrenchment of social legislation is no longer automatic. Some of the factors identified are unique to health care reform, such as the fact that most Americans already have health insurance coverage and like that coverage, thereby making truly innovative and disruptive health care reform difficult to achieve. Others are unique to the time—such as hostility toward the country’s first Black president. But others have broader applicability. Among these are fiscal constraints and budgeting rules that make it difficult to pass legislation with significant costs, and asymmetric political polarization of both Congress and the judiciary, which make it nearly impossible to pass reforms with bipartisan support, therefore increasing the likelihood of legislative and judicial retrenchment. The growing power of interest groups and the rise of the so-called “submerged state” (in this case referring to the provision of social benefits through the tax code or through private organizations), are also identified as important contributors to post-enactment vulnerability of the ACA.

Each of these factors, Scheffler argues, contributed to the ACA being “under-entrenched” when enacted. While there are many aspects of the ACA that contributed to its under-entrenchment, there are two that receive significant attention—the Act’s complexity and its delayed effective date for key reforms. Together, these factors made the reforms difficult for the average voter to understand, and prevented many benefits from being felt until four or more years after enactment, with the result that legislators likely felt little political pressure to protect the Act’s reforms.

The article concludes by reexamining the conventional wisdom that social legislation becomes quickly entrenched, using the ACA as a case study of sorts, and by highlighting other recent examples of social legislation either enacted on a temporary basis or otherwise repealed. For those interested in enduring social legislation, the article acknowledges that the very things that make legislation harder to retrench also make it harder to enact in the first place. The article, however, does offer some suggestions for reforms that might affect this enactment-entrenchment trade-off. Examples include changing CBO scoring rules and reducing vetogates in the federal legislative process.

But the strength of Professor Scheffler’s contribution in this article lies not in producing a neat and tidy solution to the possible unwinding of social programs, but rather in drawing attention to the fact that various contemporary legal and political factors make retrenchment of such programs a realistic outcome, particularly in the first few years following enactment. It provides a very stark reminder that today’s polarized and fractious political and legal landscape has a real impact on what Congress can accomplish.

Cite as: Amy Monahan, A Postmortem on the ACA, JOTWELL (September 26, 2024) (reviewing Gabriel Scheffler, The Ghosts of the Affordable Care Act, 101 Wash. U. L.Rev. 791 (2024)), https://health.jotwell.com/a-postmortem-on-the-aca/.

Regulating Skin Lightening Products: A Case Study of Structural Forces Shaping Inequities in Health

Colleen Campbell, Intersectionality Matters in Food and Drug Law, 95 Univ. Colo. L. Rev. 1 (2024).

When I was growing up, every two years or so, my family would spend the summer in India, from where my parents immigrated to the United States. For many hours on those long, hot days, when our cousins were at school or work, my bookish siblings and I read whatever we could find around the house that was printed in English: musty paperbacks of The Famous Five and The Hardy Boys, women’s magazines like Femina, and every page of any English-language newspaper – including the matrimonial ads. We were children raised in the United States, so we cackled over the frequent use of the word “homely” to describe women who were purportedly good at domestic labor and at ads that described suitors as having “no vices.” However, among the bewildering array of “biodata” listed in these ads were descriptors of skin tone: “very fair,” “fair” or “wheatish” (never “toffee,” “chestnut,” or “dark”). The Matrimonial section is where I first encountered the idea of skin color as social capital. My understanding of the societal conflation of light skin tone with beauty was reinforced in the ubiquitous ads (in magazines, on television and billboards) for Fair & Lovely, a skin-lightening cream. These ads featured the biggest Bollywood stars who, in the “after” images, had skin so light it would meet Victorian beauty ideals.

I recalled these experiences as I read Collen Campbell’s recently published article, which uses, as a case study, the under-regulation of skin-lightening creams to illustrate the need for intersectionality analyses in U.S. food and drug law. Safety concerns about cosmetics have been trivialized in food and drug law because of its “characterization as a superficial beautifying agent and its feminization, since women are its primary consumers.” Beauty products whose primary consumers are women of color are even more neglected, leaving these consumers more vulnerable to toxic exposures and compounding existing health disparities.

The Article begins with an explanation for how we got here, drawing on the existing feminist and intersectional critiques of food and drug law. As Professor Campbell states, “An intersectional lens uncovers the various underlying forces that produce a disparate health impact for women of color: systemic racism in health, racially targeted marketing, and hegemonic beauty norms shaped by race and skin color constructs.” The Article places in context the lax regulation of cosmetics marketed to women of color – and Black women in particular – by describing how these groups have disproportionately borne the risks of novel reproductive technologies, such as intrauterine devices like the Dalkon Shield and injectable contraceptives like Norplant.

The Article includes a nuanced and valuable discussion of motivations for skin lightening. Professor Campbell first defines systemic colorism as “[a]n idealization of phenotypic proximity to Whiteness and the social valuation of those features.” She explains that although colorism and racism are “systems of discrimination [that] emanate from specific sociocultural, institutional, and historical processes, including the institutions of slavery and colonialism,” they are distinct. Here, Professor Campbell makes an important contribution to public health discourses on the risks of skin lightening by pointing to the overemphasis on individualized interventions—issuing consumer warnings about skin-lightening products, “educating” women that dark skin is beautiful—while neglecting structural forces such as “systemic racism and colorism, hegemonic beauty norms, transnational capitalism, and racial marketing.”

Troublingly, Professor Campbell notes, individualizing the public health problem of skin lightening “reproduce[s] problematic stereotypes that invariably pathologize women.” It also erases the perspectives of women of color who may, in the context of systemic colorism, make rational choices to lighten their skin in order to acquire social capital or even escape harm.

In the end, Professor Campbell takes a characteristically nuanced position, calling for more regulatory attention to toxic chemicals in skin-lightening products, but not for a general ban on skin-lightening products. She links the issue of “greater regulatory attention to feminized products” to the perennial challenges women face in exercising their bodily autonomy. Professor Campbell acknowledges that some readers may still perceive her proposal as paternalistic but justifies it as an acceptable response to the public health threat of toxic exposure to cosmetics and their contribution to health disparities.

I encourage health law scholars to read this article in part because its case study focuses on a topic that, not so long ago, might have been considered so marginal as to be unsuitable for scholarly inquiry. And this precisely illustrates Professor Campbell’s point: The need to mainstream intersectionality analyses in food and drug law—and health law generally—in order to identify the structural forces shaping health inequities and the scale of interventions needed to eliminate them.

Cite as: Medha Makhlouf, Regulating Skin Lightening Products: A Case Study of Structural Forces Shaping Inequities in Health, JOTWELL (August 16, 2024) (reviewing Colleen Campbell, Intersectionality Matters in Food and Drug Law, 95 Univ. Colo. L. Rev. 1 (2024)), https://health.jotwell.com/regulating-skin-lightening-products-a-case-study-of-structural-forces-shaping-inequities-in-health/.