Columbia University Libraries Journals
Not a member yet
6467 research outputs found
Sort by
Accidental Carceral Subjects: Reassessing the Prison Nursery Model in India
Full text link
This Article critically examines the Indian prison nursery model from a sociolegal perspective. Although framed as a reform to uphold child rights, the policy of allowing children to live with their incarcerated mothers until the age of six obscures the inherently punitive and harmful nature of carceral institutions to these children.
The Article argues that the purported “choice” mothers have to keep their children with them in prison is profoundly shaped by structural inequality—while women with access to resources may arrange external care, those without are left with no meaningful alternative. This coerced caregiving compromises children’s constitutional rights and situates maternal labor within carceral control. The Article also critiques the state’s heavy reliance on nonprofit organizations to operate prison nurseries, exposing the uneven, unsustainable, and often ad hoc nature of these arrangements. Rather than mitigating harm, such reforms often entrench carceral logics under the guise of care.
Ultimately, the Article calls for a shift away from reformatory models toward abolitionist frameworks that center the dignity, rights, and autonomy of both mothers and children. It urges a radical reimagining of the state’s response to maternal incarceration, one that dismantles carceral systems and enables mothers and children to live together and thrive beyond prison walls
How does Generative AI Affect Patients' Rights? A Focus on Privacy, Autonomy, and Justice
No full textPhoto by Igor Omilaev on Unsplash
Abstract
Healthcare systems are facing constant changes due to demographic modifications (a rapidly aging population), technological developments, global pandemics, and shifts in social paradigms. These changes are increasingly being analysed through the lens of patients’ rights, which are central in ethical and legal discussions in healthcare. A significant change in healthcare today is the growing use of generative artificial intelligence (AI) in clinical practice. This research analyses the potential risks of the use of generative AI systems to fundamental patients’ rights. With a mixed methodology combining literature review and semi-structured interviews with experts and stakeholders, the study identifies three main areas of risk, each one associated with fundamental values: the right to medical data protection (privacy), the right to equal access to healthcare (justice), and the right to informed consent (autonomy). The report concludes with a discussion of the findings and presents legal and ethical recommendations to promote the benefits of generative AI in healthcare.
1. Introduction
The increasing digitalization of healthcare is reshaping how healthcare professionals deal with clinical tasks and patient interactions. This technological shift is accelerated by systemic pressures that healthcare is facing today due to a double aging population and workforce shortages. Generative artificial intelligence (GenAI) has the capacity to help healthcare providers with clinical documentation, decision-making, and patient communication through automated processes. At the same time, the fast integration of GenAI models in healthcare raises ethical and legal concerns. For example, general-purpose AI models are already being used in clinical practice without being subject to high-risk regulatory requirements. This produces regulatory gaps that challenge the protection of fundamental patients’ rights in real-world clinical settings.
This report focuses on three main patients’ rights: the right to privacy, the right to equitable access, and the right to informed consent. These rights are represented in bioethical and legal frameworks for the protection of patients. The question guiding this study is the following: How does the use of generative AI in healthcare impact patients’ rights, particularly regarding privacy, justice, and autonomy? While the analysis is framed within the EU context, the concepts and findings remain relevant for broader global discussions. By identifying key risks, such as unauthorized access to health data, limitations of anonymization techniques, algorithmic bias, and digital informed consent, this study contributes to the growing body of research on AI in healthcare and the protection of patients’ rights.
2. Context
2.1. What is Generative AI?
Generative artificial intelligence (GenAI) is a broad category of AI that, in addition to recognizing and predicting patterns, can also generate new content such as text, images, and sound, based on input and training data.[1] GenAI differs from traditional AI in two key ways: dynamic context and scale of use. While traditional AI is typically designed for specific contexts and predefined tasks, GenAI has a sort of “flexibility” and “creativity” that allows the model to learn new capabilities that it had never been explicitly trained for, allowing it to adapt to different contexts and uses.[2] In this sense, GenAI is one single tool with multiple uses and applications.[3]
Because of this high adaptability, it is harder to interpret the complex learning algorithms of GenAI, which leads to less transparency of the system. Ultimately, when asking a GenAI model to create an outcome, if asked the same thing twice, it will provide inconsistent outcomes due to its probabilistic nature.
A specific category of GenAI is large language models (LLMs), which are designed to generate human-like text. These models pertain to the class of natural language processing (NLP), the technology that allows computers to understand and process human language (an example would be Google Translate). LLMs are trained on enormous text datasets that allow the model to self-learn and create text on its own.[4]
GenAI has gained significant attention since the release of ChatGPT, a chatbot made publicly available by the American organization OpenAI in 2019. Its ease and free accessibility reached widespread adoption[5] also in healthcare settings.[6]
2.2. Generative AI in Healthcare
In healthcare, traditional AI systems are used in several areas. For example, in radiology, they automate the detection and classification of medical images.[7] In emergency departments and intensive care units (ICUs), AI is used as a decision support system. For example, the Pacmed Critical model at Leiden University Medical Centre (UMC) (Netherlands) is a machine learning model that predicts readmission or death after ICU discharge.[8] AI is also used in patient monitoring to track physiological changes and provide predictive analytics: MS Sherpa is an application for multiple sclerosis that uses digital biomarkers to monitor symptom progression and disease activity.[9]
GenAI offers new possibilities, mainly aimed at reducing administrative burdens, for instance, through automatically creating clinical documents like discharge letters, referral letters, and clinical notes.[10] For example, the UMC Utrecht (Netherlands) has developed an application that uses General Pre-training Transformer (GPT) to generate draft discharge letters.[11] GenAI is also being used to transcribe and summarize conversations between doctor and patient. “Autoscriber,” at Leiden UMC research department (Netherlands), is a digital scribe system that automatically records, transcribes, and summarizes the clinical encounter.[12] Besides administrative tasks, GenAI can assist with clinical decision-making by creating diagnosis and treatment recommendations based on patient data.[13] It also supports medical research activities like assisting in systematic reviews.[14] GenAI is also used to automatically answer patients’ questions related to their care. For example, at the Elizabeth-Twee Steden Hospital (Netherlands), a chatbot called “Eliza” answers patients’ medical questions.[15]
2.3. Current Use of Generative AI in Healthcare
The use of GenAI in healthcare is rapidly increasing, which is changing how healthcare providers manage clinical tasks and patient interactions. Recent empirical studies reveal that more than half of healthcare providers use ChatGPT, or similar general-purpose LLMs, to assist with clinical documentation, patient communication, clinical decision-making, research, and more.[16] These studies also show that despite this widespread use of GenAI, most healthcare providers lack the required knowledge and awareness of the risks of using this tool in general, and specifically for clinical tasks.[17] This lack of comprehension is probably because GenAI has only become popular and widespread recently, which makes it difficult to fully understand and assess the risks and scale of these technologies to society.
This gap in understanding GenAI’s risks is reflected in healthcare institutions. For example, a survey on AI use in Dutch hospitals found that GenAI was used in 57 percent of hospitals, with applications such as automatic transcriptions, document summarisation, and text generation.[18] The same study showed critical issues: in only 29 percent of hospitals, it was clear on what frequency AI models are retested, trained, and calibrated to errors such as hallucinations[19] and data drifting.[20] In more than half of the hospitals (52 percent), it is unknown whether, and if so, in what frequency, such practices occur at all, and in 11 percent, AI models are never retrained. Moreover, only 30 percent of hospitals reported having an AI policy describing the frameworks, standards, and guidelines for the use of AI.[21]
Another survey found that 76 percent of physicians reported using general-purpose LLMs, like ChatGPT, for clinical decision-making.[22] More than 60 percent of primary care doctors reported using them to check drug interactions; while more than half use them for diagnosis support, nearly half for clinical documentation, and more than 40 percent for treatment planning. Additionally, 70 percent use general-purpose LLMs for patient education and literature search.
These findings show a mismatch between the growing use of GenAI in clinical practices and the governance needed to ensure its responsible use. While GenAI has the potential to enhance efficiency and accuracy in clinical tasks, if it is integrated without the necessary knowledge, governance, legal, and ethical oversight, it can lead to harmful consequences to patients, such as data protection violations, automation bias, unclear accountability, healthcare inequality, incorrect clinical decisions, and the spread of misinformation.[23]
2.4. Regulatory Landscape
At the European Union (EU) level, efforts to regulate the safe use of AI in healthcare are currently fragmented. This means there is not one regulatory framework solely dedicated to governing the use of AI in healthcare. Instead, different laws cover different parts of the issue, including the European Union AI Act,[24] the General Data Protection Regulation,[25] and the Medical Devices Regulation.[26]
2.4.1. The European Union AI Act
In August 2024, the Artificial Intelligence (AI) Act entered into force. The AI Act is an EU regulation that sets rules for the development, introduction to the market, and deployment of AI systems. It adopts a risk-based approach: depending on the application and use of the system, it will fall under low, middle, high, or impermissible risk. The higher the risk, the stricter the regulatory requirements (e.g., risk management, data governance, human oversight).[27]
Medical devices like AI diagnostic tools are classified as high-risk systems due to their direct implications for health outcomes. On the contrary, the majority of GenAI systems, like ChatGPT, fall under the category of general-purpose AI systems, which means that they can be classified both as high-risk and low-risk, depending on their application.[28] Therefore, the actual risk of the GenAI system depends on how and where it is used.[29]
Large GenAI systems (like ChatGPT, Bard, DALL-E) are considered to pose systemic risks due to their widespread adoption; however, they are not always classified as high-risk applications.[30] This means that, in practice (as previously shown), a healthcare provider can and does use these systems for clinical tasks without the systems being under the requirements of high-risk medical devices. While these tools are fast and have access to vast amounts of data, they are relatively new, freely available, and not specifically designed or trained for medical use. Without the appropriate oversight and awareness, it creates the potential for unacceptable risks to patient care.
Moreover, the AI Act is presented as a horizontal regulation, which means that it applies across all sectors and industries rather than focusing on the unique needs, risks, and ethical concerns of the healthcare sector.[31] As argued later, the increasing use of digital healthcare presents new risks to patients’ rights, which will require additional and tailored protections.
2.4.2. Medical Device Regulation
The Medical Device Regulation (MDR) is an EU-binding document that governs the use of devices in clinical settings. It is also risk-based, depending on the intended purpose.
The MDR provides strict rules for GenAI systems intended for clear medical purposes, such as diagnosis. However, not all applications of GenAI are considered medical devices under the MDR, even when used for clinical tasks.[32] For example, when GenAI is used for facilitating communication between patients and practitioners, summarizing clinical reports, or generating referral letters, it is not defined as a medical purpose; therefore, they do not fall under the MDR regulation. Consequently, if healthcare providers use GenAI for such “non-medical purposes,” there is no regulatory guidance on critical issues like patient privacy and legal responsibilities.[33]
GenAI systems are highly adaptable and can be used for many different purposes. Because of this versatility, the MDR and similar regulations based on defined intended purposes face particular challenges. Many GenAI systems, such as ChatGPT, are not specifically designed for medical settings, although healthcare providers use them for clinical tasks. This leads to a regulatory gap: the technology is being used in practice but lacks adequate regulation. This lack of regulation does not ensure the trustworthiness of these tools in clinical settings and poses unacceptable risks to patients’ rights.
2.4.3. General Data Protection Regulation
The use of GenAI in healthcare settings often involves dealing with large volumes of sensitive data like medical records, scan images, and lab results. The management of this data is regulated by the General Data Protection Regulation (GDPR), an EU regulatory framework to protect data privacy. The GDPR classifies health data as a special category of sensitive information that requires additional protections. It grants data subjects with specific rights, including the right to informed consent, the right to access the data, the right to rectification, and the right to be forgotten.[34] Patient data falls under this category, and the GDPR provides strong protections, enabling the reinforcement of the principle of medical confidentiality by limiting the use and amount of such data strictly to the purpose of direct care. In practice, this means that a hospital cannot use patient data for training an AI algorithm or share it with an external vendor without obtaining explicit informed consent or meeting a legal exemption.
While the GDPR is clear for GenAI systems that are developed by the healthcare organisation itself, it becomes challenging for general-purpose GenAI systems, like ChatGPT, where the influence of the GDPR is less powerful compared to models explicitly designed to process personal data.[35] This creates a regulatory grey area for the use of general-purpose GenAI systems in healthcare settings regarding compliance with sensitive data protection standards.
3. Patients’ Rights
Healthcare systems are facing changes constantly (rapidly ageing population, scientific and technological developments, global pandemics, shifts in social paradigms, etc.). These changes are increasingly being analysed through the lens of patients’ rights.[36]
A significant change in healthcare today is the growing use of AI in medical tasks. This technological shift is likely to change traditional patients’ rights into what may soon be recognized as digital patients’ rights.[37]
The field of patients’ rights lies at the intersection of ethics and health law, bringing together moral imperatives and legal protections. Patients’ rights are a special category of human rights aimed at protecting the dignity of the individual who is in a vulnerable state of illness.[38] Since nearly all humans become patients,[39] and patients are among the most vulnerable groups in society,[40] their rights are uniquely defined and crucially important.[41]
The position of the patient is especially vulnerable because of their illness, which can cause insecurity and fear. Moreover, the patient is in an unbalanced position compared to the doctor, who is learned, skilled, and experienced in the topics in which the patient often knows little or nothing about, and still are extremely important for the patient, since their health may depend on them.[42] Besides this information asymmetry, the interaction between patient-practitioner is of a critical and private nature, which leaves the patient to highly depend on the practitioner in order to obtain adequate assistance.[43] This imbalance creates an easy potential for abuse of power (intentional or not) and shows why it is necessary to give special attention to protecting the patient.
3.1. Legal Protection for Patients’ Rights
Over the past decades, patients’ rights have been recognized in a variety of different documents (Declarations, Charters, Laws) at the international, regional, and national levels.[44] Examples of these regulatory efforts include:
European Convention of Human Rights and Fundamental Freedoms (1950)
International Covenant on Civil and Political Rights (1966)
A declaration on the promotion of patients’ rights in Europe (WHO, 1994)
Declaration of Lisbon of the World Medical Association (1995)
Wet op de Geneeskundige Behandelingsovereenkomst (WGBO) (Medical Treatment Agreement Act) (1995)
Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (Oviedo Convention) (1997)
European Charter of Patient Rights (2002)
These documents are crucial to provide a framework to protect the dignity, freedom, self-determination, and respect of patients. However, the fragmented nature of patients’ rights creates a complex landscape that can be challenging for both patients and healthcare providers to navigate. As Herranz notes,[45] these documents are highly diverse and target different audiences; some are universal, others regional or national in scope. While this diversity reflects the growing importance of patients’ rights globally, it also creates a fragmented landscape. Both patients and healthcare providers may find it difficult to understand the specific rights and obligations that apply in their context due to the diverse and spread nature of these rights between jurisdictions.[46]
4. Methodology
4.1. Study Design and Population
This qualitative study consisted of semi-structured interviews with key experts and stakeholders. Stakeholder mapping was conducted through a document desk review. This process identified five relevant stakeholder groups: (1) patients, (2) healthcare providers, (3) healthcare organizations, (4) AI & Data experts, and (5) Ethical & Legal experts.
Participants were selected based on the following criteria: being 18 years or older, having the capacity to give informed consent, being knowledgeable about the use of AI in healthcare (this criterion did not apply to patient participants), and the ability to communicate in English. Each interview began with a short case study to provide participants with a concrete scenario to consider while answering the questions. Presenting a case study enabled a more focused discussion and helped participants reflect on specific risks.[47]
4.2. Tools
Member States of the European Union (EU) do not share a single binding document to protect patients’ rights. Instead, they are diversified in multiple pieces of legislation. Although these rights are widely recognized in the EU, each country applies its own medical regulations depending on its context and traditional norms.[48] However, it is possible to identify a set of fundamental patients’ rights that are widely recognised across all EU Member States.[49] This study focused on three of these fundamental patients’ rights to guide the development of interview questions. These rights were selected based on existing European frameworks (including the European Convention on Human Rights; the Charter of Fundamental Rights of the European Union; and the European Convention on Human Rights and Biomedicine, or the Oviedo Convention), as well as Dutch legislation (Burgerlijk Wetboek Boek). The selected rights include: (1) The right to autonomy & informed consent of the patient: Patients must be able to make informed decisions about their care,[50] (2) The right to privacy & medical data protection: Personal health data must be kept secure and confidential,[51] and (3) The right to access to healthcare & non-discrimination: Care must be accessible to all, regardless of background, and without unfair barriers.[52]
This research also draws on the classic bioethical framework proposed by Tom Beauchamp and James Franklin Childress[53] to identify ethical guidelines that can support the responsible use of AI in healthcare and help safeguard those patients’ rights. The principles include: (1) Principle of justice: In healthcare ethics, justice refers to the concept of distributive justice, where all patients must be treated equally. This means every patient should receive the same quality of care (offering a uniform standard of quality) regardless of who they are. Persons with greater levels of need should be entitled to greater healthcare services when there is no discernible direct injury to others with lesser levels of need. In the context of AI, this raises important questions: Is access to AI-driven healthcare tools equitable? Are certain groups being left behind due to cost, location, or bias in algorithms? Justice also requires rejecting discrimination and ensuring that health technologies are available to all who need them. This principle is also public and legislated; (2) Principle of non-maleficence: This principle means “do no harm.” It is rooted in the Hippocratic tradition and updated in modern medicine to include preventing harm from unnecessary medical interventions (quaternary prevention). When applied to AI, it asks: Could the use of AI lead to the misdiagnosis of a patient, reinforce bias, or erode trust in care? If AI tools cause harm through poor design, overreliance, or misuse they can breach this core ethical obligation. It is a principle of the public sphere and non-compliance is punishable by law; (3) Principle of autonomy: Respect for aut
Privacy as a Matter of Public Health
Full text linkThis Article examines the striking parallels between contemporary privacy challenges and past public health crises involving tobacco, processed foods, and opioids. Despite surging state and federal privacy legislation, many of these new privacy law and policy activities follow familiar patterns: an emphasis on individual choice, narrowly defined rights and remedies, and a lack of holistic accounting of how privacy incursions affect society as a whole. We argue instead for a salutary shift in privacy law and advocacy: understanding privacy through the lens of public health.
By tracing systemic factors that allowed industries to repeatedly subvert public welfare—from information asymmetries and regulatory capture to narratives of individual responsibility—we explore a fundamental rethinking of privacy protection. Our analysis of case studies reveals remarkable similarities between public health challenges of the past half-century or so and the ongoing consumer privacy crisis. We explore how public health frameworks emphasizing preventative policies and reshaping social norms around individual choices could inform privacy advocacy. To do so, we examine a spectrum of proposals to align privacy with public health, from adopting public health insights to provocatively reframing privacy violations as an epidemic threatening basic wellbeing.
This Article offers a novel framework for addressing the current privacy crisis, drawing on the rich history and strategies of public health. In reframing privacy violations as a societal health issue rather than a matter of consumer choice, we see new avenues for effective regulation and protection. Our proposed approach not only aligns with successful public health interventions of the past but also provides a more holistic and proactive stance towards safeguarding privacy in the digital age
Medical Assistance in Dying for Persons Suffering Solely from Mental Illness in Canada: Is it Ethically Acceptable?
Full text linkPhoto ID 71252867© Stepan Popov| Dreamstime.com
Abstract
While Medical Assistance in Dying (MAiD) has been legalized in Canada since 2016, it still excludes eligibility for persons who have mental illness as a sole underlying medical condition. This temporary exclusion was set to expire on March 17th, 2024, but was set 3 years further back by the Government of Canada to March 17th, 2027. This paper presents a critical appraisal of the case of MAiD for individuals with mental illness as the sole underlying medical condition through the analysis of three ethical theories: principlism, deontology, and utilitarianism. Through evidence and discussion, it will be demonstrated that MAiD, in this context, may be ethically justifiable on the grounds of upholding human rights, protecting dignity, and minimizing suffering.
Introduction
In June of 2016, Medical Assistance in Dying (MAiD) was legalized in Canada.[1] Throughout the first six years, a temporary exclusion of eligibility for persons suffering solely from mental illness was extended.[2] The exclusion of mental illness as a sole underlying medical condition was set to expire on March 17, 2024.[3] However, on February 1, 2024, just over a month before the set expiration, the Government of Canada once again extended the exclusion, this time setting it back three years to March 17, 2027. There are currently several countries that allow MAiD for mental illness, including Belgium, the Netherlands, and Luxembourg.[4] Some countries, like Spain,[5] do not give specific guidance, leaving the matter under discussion by ethicists and courts. In these countries, there are specific (although different) requirements for the process; overall, for mental illness, the illness must be verifiable and not simply related to a perception of satisfaction with the length of life.
This extension ignited discussion on whether MAiD for persons who have mental illness as a sole underlying medical condition in Canada is ethically acceptable. As a complex, multi-faceted, and interdisciplinary issue, ethicists assessing MAiD must take into account various moral obligations and considerations. This paper analyses MAiD in this context through the application of three ethical theories: principlism, deontology, and utilitarianism. This paper concludes that, based on the current evidence and knowledge of this developing situation, MAiD for persons with mental illness in Canada may be ethically justified on the grounds of upholding human rights, labour obligations, and dignity. Through the exploration of research and discussions, it will be demonstrated that society at large ought to protect liberty and act towards relieving suffering, thereby supporting the potential eligibility of MAiD for persons who have mental illness.
Principlism: The Capacity and Ability to Assess and Decide for One’s Own Life
Principlism is the application of four principles: autonomy, beneficence, non-maleficence, and justice. Principlism supports permitting MAiD for mental illness due to the importance of autonomy in decision-making, equitable and just practices for MAiD assessors, and reducing suffering for patients and their family member(s) and/or friend(s).
Carter v. Canada, the Canadian Supreme Court ruling of 2015—which changed Canadian law to allow for MAiD—held that the prohibition of MAiD infringed on Canadians’ right to “life, liberty, and the security of the person.” In a unanimous decision, the Supreme Court of Canada decided that the criminal prohibition of MAiD violates the Canadian Charter of Rights and Freedoms.[6] The Court concluded that the criminal law prohibiting MAiD interfered with people’s autonomy and dignity, which are protected by the rights of liberty and security of the person.[7] The ruling emphasized that Canada’s constitution reflects the fundamental importance of individual autonomy in personal decision-making.
Research provides evidence that MAiD improves autonomy: A study among psychiatric patients found that 8 of 48 psychiatric patients said the mere option of accessing MAiD was enough to assess their future options for living wholly.[8] These findings complement a study entailing interviews with 30 adults who have mental illness, which emphasized that the ability to access MAiD allows individuals to analyze their quality of life, envision their desired future, and make decisions accordingly.[9] Although not all participants agreed that mental illness as the only underlying medical condition was appropriate for MAiD eligibility, many participants agreed that patient autonomy in decision-making was paramount and should be respected.
However, autonomy as an ethical principle does not immediately grant all persons with mental illness the option to access MAiD. There are multiple eligibility criteria for those who wish to receive MAiD, which still must be approved and assessed. Currently, eligibility criteria for MAiD states that individuals must “give informed consent to receive MAiD, meaning that the person has consented to receiving MAiD after they have received all information needed to make this decision.”[10] Consent requires capability or capacity, which is the ability to understand relevant information, appreciate its potential consequences, and make an informed decision for oneself.[11] Like for many other diseases, disabilities, and conditions, patient capability is determined on a case-by-case basis.[12] Given the stigma surrounding those struggling with mental health, this thorough case-by-case examination of an individual patient’s capability and capacity without prejudice or partiality should lead to equitable and fair treatment. Without appropriate testing, those with mental illness could be wrongly stripped of their decision-making power.
Arguments against MAiD for those with mental illness have raised concerns about the potential for individuals to harm themselves and others. A survey of MAiD providers demonstrated that physicians believed that the bereavement experience following MAiD is challenging and profoundly distinct and that bereavement support for all members involved should be required.[13]
However, while watching one die (of MAiD) may cause harm to their families, friends, and support system at large, it is also important to recognize that watching someone suffer and struggle through their mental health journey also poses significant harm. Qualitative studies in Ontario, Canada, have interviewed family members of persons with mental illness as a sole medical condition, and interviewees shared that witnessing the illness and its impacts on their close one's lives was a very difficult experience.[14] As it relates to MAiD, participants emphasized that those living with mental illness are in the best position to understand their own pain and suffering and, in turn, make their own decisions about relief.[15] In an interview, a MAiD provider stated that MAiD may provide less suffering and more peace, and that, although it “depends on the family, ... usually the family is more prepared and at peace.”[16]
On the contrary, a person who has mental illness may perceive choosing MAiD as beneficial to their family member(s) and/or friend(s). Among those who died by MAiD in 2021, 35.7 percent reported that they perceived themselves as a burden on their family and friends.[17] While some authors report their concerns regarding such social burden as a potential driving factor for MAiD requests, others report that there are other additional burdens associated with requesting MAiD that may be financial, societal, and personal.[18] As such, the extension of MAiD eligibility to those with mental illness will likely only allow a small number of people to be granted MAiD.[19] Many others will be diverted to appropriate services and treatments.
Patients’ decision to choose MAID noted their ability to make choices about their own care, reflecting the value of autonomy.[20] Although it is difficult to determine what is good for families in individual cases, MAiD presents an option that is both beneficent and non-maleficent. Therefore, these arguments satisfy the principles which do not necessarily conflict with MAiD.
Deontology: The Duty to Recognize Vulnerability and Relieve Suffering
The argument here begins with the fundamental focus of deontology—that moral duty lies in an action rather than in its consequences.
Further discussion is required to analyze the impact of MAiD on healthcare workers. The Canadian Medical Association (CMA) Code of Ethics and Professionalism requires physicians to abide by virtues, commitments, and responsibilities in delivering health care and service.[21] The code states that “a compassionate physician recognizes suffering and vulnerability, … and alleviate[s] the patient’s suffering.”[22]
In the context of MAiD for persons with mental illness as a sole underlying medical condition, vulnerabilities could be wide in range. Many Canadians are concerned with the interaction between mental health and other social determinants of health, such as the lack of medical, disability, financial, housing, and social support and resources.[23] As a result, another layer to the ethical issue arises: Does permitting MAiD for mental illness treat the symptoms of the issue rather than the root problem itself (social, economic, and systemic inequities)? Some argue against MAiD, stating that the nation should first focus on developing better quality care and service.[24] Others support MAiD as a potential harm reduction approach, given that most of these unjust conditions require a higher level of long-term structural and public policy overhaul.[25]
The CMA Code also calls upon physicians to recognize and alleviate patients’ suffering. Some argue that while physicians and medical professionals do work to relieve suffering, they are trained to do so through a primary care-based diagnose-and-treat approach.[26] Studies that have captured Canadian physicians’ experiences providing MAiD report that, although physicians stated that the work was rewarding, it came with many challenges, including strained relationships with coworkers, increased workload, and inadequate compensation.[27] Physicians report that a part of the problem is that MAiD rules are written by lawyers and experts who are removed from its reality in medical practice. As a result, there is a lack of clarity surrounding practice norms and a lack of support for physicians.[28] Thus, while healthcare practitioners have a duty to relieve patients’ suffering, they should feel adequately trained and supported in doing so.
If physicians and healthcare professionals recognize vulnerability and relieve suffering, then they should act accordingly, regardless of potential associations or outcomes. Making persons with mental illness eligible for MAiD ensures that treatment to relieve their suffering is available. However, it is imperative that there are sufficient resources and support available to healthcare professionals to ensure that they feel prepared and supported to provide MAiD, should they wish to do so.
Utilitarianism: Minimizing Intolerable Suffering and Dying with Dignity
Overall, utilitarianism is largely concerned with the greatest happiness principle—to increase the amount of happiness for the greatest number of people. So far, this paper has analyzed individual, family, and practitioner-based ethical considerations. But if MAiD were to be extended to those with mental illness as a singular underlying medical condition, what implications would this have for the world and society at large?
There is a global drive toward authorizing organized ending of life, with an increasing number of countries legalizing MAiD.[29] The medical system is generally seen as a safe and appropriate system to carry out MAiD, especially when suicide and self-harm are regarded as “alternatives.” Yet despite these worldwide efforts, many argue through the theory of utilitarianism that the inability to see long-term consequences renders MAiD a premature solution, particularly for those who are unable or unwilling to seek other forms of potentially healing treatment or for those who may undergo MAiD only for a technological innovation or biomedical advancement to later come along as a potential cure.[30] While it is true that MAiD does not prevent these “premature deaths,” it is also true that it does not claim to.[31] MAiD provides an option to alleviate intolerable suffering. Some individuals with severe mental illness do describe their condition as intolerable suffering.
MAiD is seen as an option to minimize suffering. It can also be seen as a way to die with dignity and relief.[32] While predicting outcomes is difficult, extending MAiD eligibility for persons experiencing mental illness does not undermine its ability to end suffering. It allows eligible individuals to take charge of their health, their life, and their future.
Conclusion
Based on the current evidence, allowing MAiD for persons with mental illness as their sole underlying medical condition presents as an ethically justifiable action. The right to self-determination and fair accessibility demonstrates that there is more harm done by prohibiting MAiD for mental illness than allowing it. Such liberty is a right, and in the context of relieving suffering, it is a duty that healthcare workers must uphold, although the ability to opt out of providing MAiD is well established. Thus, to recognize vulnerability and relieve suffering means to provide methods, such as MAiD, for those deeply impacted by mental illness. These justifications stand at both the individual level and for society at large.
Nevertheless, it remains imperative to take an upstream approach that addresses the social determinants of health and aims to prevent mental illness and promote long-term, beneficial social change for those suffering, struggling, and vulnerable in our communities.
-
[1] Jaro Kotalik and David W. Shannon, Medical Assistance in Dying (MAID) in Canada Key Multidisciplinary Perspectives, 1st ed. 2023., The International Library of Bioethics, 104 (Cham: Springer International Publishing, 2023), https://doi.org/10.1007/978-3-031-30002-8.
[2] Department of Justice Government of Canada, “Canada’s Medical Assistance in Dying (MAID) Law,” February 21, 2024, https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html.
[3] Health Canada, “Final Report of the Expert Panel on MAiD and Mental Illness,” transparency - other, May 13, 2022, https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/expert-panel-maid-mental-illness/final-report-expert-panel-maid-mental-illness.html.
[4] Federal Public Service (FPS) Health Belgium, “Federal Commission for the Control and Evaluation of Euthanasia,” n.d., https://consultativebodies.health.belgium.be/en/advisory-and-consultative-bodies/federal-commission-control-and-evaluation-euthanasia.; Government of Netherlands, “Is Euthanasia Allowed in the Netherlands?,” n.d., https://www.government.nl/topics/euthanasia/is-euthanasia-allowed.; “Information on Requesting Euthanasia or Assisted Suicide,” n.d., https://guichet.public.lu/en/citoyens/sante/fin-vie/euthanasie/euthanasie-assistance-suicide.html.
[5] Luis Espericueta, First official report on euthanasia in Spain: A comparison with the Canadian and New Zealand experiences, Medicina Clínica (English Edition), Volume 161, Issue 10, 2023, Pages 445-447,
ISSN 2387-0206, https://doi.org/10.1016/j.medcle.2023.06.021.
[6] Government of Canada, “The Canadian Charter of Rights and Freedoms,” March 15, 2021, https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/.
[7] Supreme Court of Canada, “Carter v. Canada,” Constitutional Law, 2015, https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do.; Kotalik and Shannon, Medical Assistance in Dying (MAID) in Canada Key Multidisciplinary Perspectives.
[8] Karandeep Sonu Gaind, “What Does ‘Irremediability’ in Mental Illness Mean?,” Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie 65, no. 9 (September 2020): 604–6, https://doi.org/10.1177/0706743720928656; Lieve Thienpont et al., “Euthanasia Requests, Procedures and Outcomes for 100 Belgian Patients Suffering from Psychiatric Disorders: A Retrospective, Descriptive Study,” BMJ Open 5, no. 7 (July 27, 2015): e007454, https://doi.org/10.1136/bmjopen-2014-007454.
[9] Hamer Bastidas-Bilbao et al., “Walking Alongside: Views of Family Members on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition,” Qualitative Health Research 33 (September 29, 2023), https://doi.org/10.1177/10497323231197365.
[10] Government of Canada, “Canada’s Medical Assistance in Dying (MAID) Law.”
[11] Commission sur les soins de fin de vie, “Les conditions de l’admissibilité à l’aide médicale à mourir au Québec: la constance dans l’évolution de la loi concernant les soins de fin de vie,” June 9, 2023, https://csfv.gouv.qc.ca/ fileadmin/docs/autres_rapports/csfv_lcsfv_conditions_ amm_2023-06-29.pdf.; Trudo Lemmens, “When Death Becomes Therapy: Canada’s Troubling Normalization of Health Care Provider Ending of Life,” The American Journal of Bioethics 23, no. 11 (November 2, 2023): 79–84, https://doi.org/10.1080/15265161.2023.2265265.
[12] Justine Dembo, Udo Schuklenk, and Jonathan Reggler, “‘For Their Own Good’: A Response to Popular Arguments Against Permitting Medical Assistance in Dying (MAID) Where Mental Illness Is the Sole Underlying Condition,” Canadian Journal of Psychiatry. Revue Canadienne De Psychiatrie 63, no. 7 (July 2018): 451–56, https://doi.org/10.1177/0706743718766055.
[13] Konia Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” British Columbia Medical Journal 62, no. 1 (2020).
[14] Bastidas-Bilbao et al., “Walking Alongside.”
[15] Bastidas-Bilbao et al.
[16] Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” 2020.
[17] Ramona Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” Palliative & Supportive Care 21, no. 5 (October 2023): 871–78, https://doi.org/10.1017/S1478951523001025; Health Canada, “Third Annual Report on Medical Assistance in Dying in Canada 2021,” report on plans and priorities;transparency - other, July 26, 2022, https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2021.html; Lemmens, “When Death Becomes Therapy.”
[18] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023.; Bastidas-Bilbao et al., “Walking Alongside.”
[19] Olivia Stefanovich, “Opposition Parties Call for Indefinite Pause to MAID Expansion for Mental Illness | CBC News,” Canadian Broadcasting Corporation, January 28, 2024, https://www.cbc.ca/news/politics/special-joint-committee-maid-mental-illness-report-1.7095679; Benjamin Lopez Steven, “Number of Assisted Deaths Jumped More than 30 per Cent in 2022, Report Says | CBC News,” Canadian Broadcasting Corporation, October 27, 2023, https://www.cbc.ca/news/politics/maid-canada-report-2022-1.7009704.
[20] Hamer Bastidas-Bilbao et al., “Searching for Relief from Suffering: A Patient-Oriented Qualitative Study on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition,” Social Science & Medicine 331 (August 1, 2023): 116075, https://doi.org/10.1016/j.socscimed.2023.116075.
[21] Canadian Medical Association, “Canadian Medical Association Code of Ethics and Professionalism” (Canada: Canadian Medical Association, December 8, 2018), https://policybase.cma.ca/link/policy13937.
[22] Canadian Medical Association.
[23] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023; Stefanovich, “Opposition Parties Call for Indefinite Pause to MAID Expansion for Mental Illness | CBC News.”
[24] John Paul Tasker, “Liberal Government Promoting a ‘culture of Death’ with Medical Assistance in Dying Law, Conservative MP Says | CBC News,” Canadian Broadcasting Corporation, March 6, 2023, https://www.cbc.ca/news/politics/culture-of-death-medical-assistance-in-dying-mental-illness-1.6769504.
[25] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023; Kayla Wiebe and Amy Mullin, “Choosing Death in Unjust Conditions: Hope, Autonomy and Harm Reduction,” Journal of Medical Ethics, April 26, 2023, https://doi.org/10.1136/jme-2022-108871.
[26] Ramona Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” Palliative & Supportive Care 21, no. 5 (October 2023): 871–78, https://doi.org/10.1017/S1478951523001025.
[27] Konia Trouton et al., “Attitudes and Expectations Regarding Bereavement Support for Patients, Family Members, and Friends: Findings from a Survey of MAID Providers,” British Columbia Medical Journal 62, no. 1 (2020), https://bcmj.org/articles/attitudes-and-expectations-regarding-bereavement-support-patients-family-members-and.; William Robert Nielsen, “MAiD in Canada: Ethical Considerations in Medical Assistance in Dying,” Canadian Journal of Bioethics 4, no. 2 (December 9, 2021): 93–98, https://doi.org/10.7202/1084456ar.
[28] Coelho et al., “The Realities of Medical Assistance in Dying in Canada,” October 2023.
[29] Lemmens, “When Death Becomes Therapy.”
[30] William Robert Nielsen, “MAiD in Canada: Ethical Considerations in Medical Assistance in Dying,” Canadian Journal of Bioethics 4, no. 2 (December 1, 2021): 93–98, https://doi.org/10.7202/1084456ar.
[31] Steven, “Number of Assisted Deaths Jumped More than 30 per Cent in 2022, Report Says | CBC News.”
[32] A. Plaisance et al., “Qu
Trans Experiences In Healthcare: Testimonial Injustice in Clinical Practice
Full text linkPhoto ID 280792184 © Jj Gouin| Dreamstime.com
Abstract
Healthcare providers should advocate for human and civil rights. They ought to recognize injustices that unfairly disadvantage certain groups of people and work to improve broader conditions that affect health. Healthcare systems have historically undervalued and even excluded certain voices from the creation of an evidence base for care, furthering health disparities for members of these groups. This is a form of testimonial injustice. Trans people experience a particular form of testimonial injustice in healthcare settings when evidence and expertise related to their lived experience are excluded from consideration, as was the case with the 2024 Cass Review. Such exclusion can lead to mistreatment and harm. Providers must be vigilant in recognizing and addressing testimonial injustice against trans patients and the health disparities it can cause.
Introduction
Trans individuals (people who identify as transgender, transsexual, or whose gender identity is different from the sex they were assigned at birth) face many barriers to health care. The lack of competent, knowledgeable providers poses a significant barrier to gender-affirming care, as well as other forms of everyday health care for trans people.[1] Addressing this challenge requires health professionals to actively oppose structures that perpetuate epistemic injustice, which Miranda Fricker defines as “wrong done to someone specifically in their capacity as a knower.” Testimonial injustice (a kind of epistemic injustice) undermines collective understanding of marginalized perspectives through systemic misrepresentation or dismissal of marginalized individuals’ experiences or contributions.[2] Testimonial injustice contributes to unjust conditions for accessing care and results in poorer health outcomes for transgender individuals. As professionals committed to ethical and equitable patient treatment, we believe it is imperative that healthcare providers recognize and carefully consider the experiences and expertise of trans people in order to address injustices experienced by trans people in healthcare settings. Through an analysis of the Cass Review, we demonstrate how a flawed interpretation of available evidence and the dismissal of trans testimonies generates an injustice that results in significant and unwarranted restrictions on gender-affirming care.
Testimonial Injustice
Trans people regularly experience testimonial injustice in health care. It occurs when providers inappropriately discount their patients’ accounts — for example, by refusing to believe patients when they say that they are trans or gender non-conforming. This results in prejudiced assumptions about health behaviors or needs, bias and stereotyping that influence clinical judgment, and harm in the form of worse physical and mental health outcomes.[3]
Testimonial injustice takes several pernicious forms. For example, a Black woman whose reports of high postpartum pain are disregarded by her providers because of her Blackness has suffered testimonial injustice when she receives lower doses of pain medication compared to other postpartum patients at the same hospital.[4] Her attestation of pain, an experience at once personal and universal, has been inappropriately regarded as insufficiently credible, resulting in harmful and unequal postpartum pain management.
Testimonial injustice harms the physical, mental, and social well-being of trans people, worsening health outcomes caused by systemic barriers and discriminatory practices. Negative healthcare experiences, along with mistreatment from providers, lead to disproportionately high rates of depression, psychological distress, and suicidal ideation among trans patients.[5] These harmful interactions lead to lower healthcare utilization and delayed treatment. Trans people are also less likely to receive preventative cancer screenings, including for cervical, breast, and colorectal cancers.[6] These disparities, compounded by the accumulation of daily stress from discrimination, contribute to not only an increased risk of cancer but also to worse cancer outcomes.[7] Trans people are diagnosed at later stages, they are less likely to receive treatment for cancer and also have higher mortality rates for certain cancers.[8] Similar disparities are seen in cardiovascular health;[9] trans people are at greater risk for heart attacks.[10] They are also more likely to have multiple concurrent chronic conditions, including coronary heart disease, asthma, arthritis, diabetes, cancer, stroke, kidney disease, etc.[11]
Clearly, there are significant and life-threatening gaps in care for trans people. These disparities result in worsened health outcomes, increased mistrust, and preventable deaths. A key factor in addressing these disparities is awareness of testimonial injustice: providers must recognize how their personal interactions with trans individuals, in the context of broader systemic barriers to adequate healthcare, can contribute to harmful practices and negligent care. In what follows, we argue that testimonial injustice contributes to trans peoples’ well-documented experiences of healthcare discrimination.
The Cass Review
The 2024 Cass Review (“the Review”), an independent review of gender treatment for trans youth commissioned by the National Health Service (NHS) in England, has caused significant harm to young trans people in the UK. The NHS ordered the Review, comprising of six systematic reviews, after concerns arose regarding an increase in referrals for trans care associated with doubts about its scientific rationale. The Review’s recommendations stem from a narrow reading of the evidence base for gender-affirming care and have resulted in significant restrictions on puberty-suppressing medication, hormone therapy, and care availability for trans youth in the UK.[12]
Professional organizations and transgender health providers have widely criticized the Review’s findings. They assert that it contains many errors that “conflict with well-established norms of clinical research and evidence-based health care” and “raise serious concern about the scientific integrity of critical elements of the report’s process and recommendations.”[13] For example, the Review claims that referrals for trans care have grown exponentially (even while most transgender adolescents in the UK are not referred for care, and an expert critique of the Review led by the Integrity Project at Yale University found that the exponential growth is likely the result of double-counting referrals). This critique observes that the Review makes the provision of gender-affirming care appear “rushed, careless, and common,”[14] despite a waiting time of over two years for the assessment. Further, of the patients seen during the Review’s period of study, only 27 percent were referred to endocrinology for consideration of medical intervention.
The Review includes an unsubstantiated concern that early supportive interventions such as puberty blockers necessarily result in irreversible effects. Puberty blockers, or gonadotropin releasing analogue (GnRHa), cause a temporary downregulation of the production of estrogen or testosterone when used during early puberty.[15] When prescribed for cis (people whose gender identity corresponds to the sex they were assigned at birth) and trans youth alike, they pause puberty (i.e., delaying development of secondary sex characteristics) reversibly. Reproductive function is restored if endogenous puberty resumes.[16] This therapy alone does not typically cause permanent physical changes, and when treatment is stopped, puberty resumes.[17] GnRHa medications are commonly used in treatment for precocious puberty in cisgender youth without impairing reproductive development or function, and research has demonstrated that puberty was continued within one year after GnRHa discontinuation.[18],[19] Long-acting GnRHa usage is also routinely seen in fertility preservation as the only medical option to preserve ovarian function in patients with cancer.[20] Indeed, after starting GnRHa medications, the collection of sperm or ova for reproductive purposes is a well-established option.[21] Studies have consistently shown that puberty blockers lead to positive outcomes for trans youth, including significant improvements in overall functioning, reductions in depressive symptoms, and lower lifetime rates of suicidal ideation.[22]
The Review’s approach to the evaluation of evidence led to the exclusion of substantial peer-reviewed evidence in support of puberty blockers and hormones, including evidence regarding the lived experiences of trans youth. For instance, the authors deemed only one of the 50 studies in the systematic review of puberty blockers to be “high quality.” This is not a value-neutral or inevitable way to frame these studies. Rather, the research studies excluded from the Review because of “low evidence” were often qualitative or observational investigations that had no control group, while the ones considered “high quality” tended to be randomized controlled trials (RCTs).[23] However, discounting observational studies inappropriately treats transness as exceptional because observational studies constitute much of the evidence that guides clinical care for all fields of medicine.[24] Indeed, the World Health Organization published a series of papers in 2019 on the value of including qualitative studies in the development of clinical guidelines, arguing that “Qualitative evidence is crucial to improve the understanding on how, and whether, people perceive health interventions to be effective and acceptable. It is also essential to understand the factors influencing the implementation of health policies and interventions.” In other words, this kind of evidence provides context and reasoning that frame, rather than flattens, the complexity of human experiences that shape and are shaped by gender-affirming care.[25]
Randomized controlled trials are often considered unethical in studying gender-affirming care. One reason for this is the lack of clinical equipoise: the medical community has already accepted gender-affirming care as the clinical standard, so there is dubious value in using limited resources to study resolved research questions.[26] In a randomized clinical trial, the control group would typically receive psychotherapy for gender-incongruent puberty instead of medications, which would necessitate withholding beneficial gender-affirming care from participants when there is evidence that treatment prevents serious harm.[27] On the other hand, observational studies can include more diverse patient populations and offer greater specificity about experiences than randomized controlled studies. Larger observational studies with extended follow-ups can also identify long-term benefits or harms that are useful for clinical guidelines.[28] Treating this kind of evidence as insufficient to support trans care represents a biased approach that undermines the legitimacy of patient testimony in the development of an evidence base for trans individuals. The selective use of evidence constitutes a form of testimonial injustice, as an entire body of medical knowledge important to, and often generated by, those affected is systematically dismissed.
The Review limited meaningful involvement from trans patients and providers who had experience in the provision of gender-affirming care.[29] The Review’s Assurance Group — which was intended to provide “expert advice” on the conduct of the review — explicitly left out trans voices, stating that its “Members are independent of … providers of gender dysphoria services, and of any organisation or association that could reasonably be regarded as having a significant interest in the outcome of the Review.”[30] The logic of this exclusion was to ensure that nobody with a “significant interest in the outcome of the review” would bias its results through their personal or professional commitments. This approach is analogous to attempting to eliminate bias from a panel shaping clinical guidelines for heart disease by excluding both cardiologists and heart disease patients. The problem is not merely that trans people and those with expertise in their care were excluded as experts. This approach also flies in the face of contemporary best research practices that treat both lived and professional experience as important forms of expertise. Trans people and the people who provide them with health care should have been actively involved in research that affects their lives and care. The deliberate exclusion of their voices from the review process is a clear example of testimonial injustice.
The Review excludes providers with experience in gender services due to the assumption of bias. In doing so, it implies that those who are empowered to lend their expertise are without bias. By treating only support for transgender adolescents as a disqualifying bias, the Review reviews its own normativity. The framework of testimonial injustice helps us to understand the links between the discounting of individual testimony about identity and the constitution of medical authority that translates such refusal to believe into refusal to provide care.
In addition to minimizing the input of patients and providers with lived experience in the Assurance Group, the Cass Review also included healthcare workers who explicitly deny trans identity in its “online multi-professional panel to explore issues around gender identity services.” When prompted with the statement
There is no such thing as a trans child. Gender dysphoria is always an indicator of another underlying problem, and assessment should focus on understanding the causes of their distress.
21 percent of the panel responded that they strongly agree or agree. The authors of the Review may feel that excluding transgender people and the physicians who care for them preserves objectivity. We argue, however, that it is inappropriate to include as expert advisors individuals who do not acknowledge the existence of the group the Cass Review examines and whose access to care the Review will, in turn, shape.[31] These experts call the existence of transgender youth (not just the kind of care that they need) into question: another decisive case of testimonial injustice. The Review does not make it clear that such a significant proportion of the experts it relies on do not believe in transgender children or that the root cause of distress in this population is gender. It may be unclear to policymakers and the public that people holding such views are shaping practice norms. This insight emerges only when evaluating the Likert response answers provided by the Review’s expert consultants via auxiliary reports, not via the main document or any included disclosures, discussions, or reports of the Review's limitations.
The Review has had immediate and significant ramifications for trans NHS patients’ access to gender-affirming care.[32] It was also extensively cited as evidence against adolescent gender-affirming care provision in the oral arguments of US v. Skrmetti, a case about the constitutionality of Tennessee’s ban on gender-affirming care for minors.[33] Citing its early findings, the British government ordered closures of children’s gender services and stopped accepting referrals for gender-affirming care.[34] The Review was also used to justify halting the use of puberty blockers for the treatment of youth gender dysphoria, though the same medications remained available for other pediatric health needs (e.g., precocious puberty).[35]
Systemic Testimonial Injustice
Trans people experience testimonial injustice far beyond what the Cass Review manifests. One such everyday form is how trans individuals must not only articulate the legitimacy of their identities but defend them against accusations of insufficient self-knowledge or the intent to deceive others about their gender.[36] Many have experienced this injustice when required to convince their healthcare providers that they are “trans enough” to receive needed care. In a focus group conducted with trans youth in 2022, participants described having their gender identity questioned by providers:
I think the big question, the question I’ve come back to over and over again [the doctor] asked me is, what does being a girl mean to you? And I didn’t have an answer. He was very skeptical of my lack of an answer for that. He was like, well I just – I feel like you should be able to talk about this. I think you might be moving too fast if you can’t talk about this. And I was like, well, no I think it’s just a stupid question. But I didn’t say that because I was 14 and small and nervous… And then when my parents came back in … he said he wanted to caution us against moving too quickly because he’s against permanent changes in children at a young age. He says he doesn’t think it’s a good idea... He just doesn’t think there’s enough science behind it to back it up.[37]
Trans youth suffer testimonial injustice when their identities and existence are met with unreasonable skepticism or discounted entirely. This perceived lack of credibility often results in challenges from medical providers who may frame their own skepticism as concerns regarding reversibility and potential for regret. While irreversible interventions may demand special scrutiny and regret is generally to be avoided, the fact of such risks should not automatically preclude the provision of gender-affirming care. The frame of testimonial injustice helps us to see how provider interactions like these exemplify the systemic prejudice that trans people and others who diverge from cisnormative expectations face when their credibility is discounted, and accounts of their own selves are deemed untrustworthy.[38]
Clinicians’ skepticism about their adolescent patients’ need for gender-affirming care may be rooted in an assessment that there is insufficient evidence to support gender affirmation as a standard of care. While the Cass Review’s findings of such evidentiary weakness have been strongly disputed by a number of analyses discussed elsewhere in this piece, we also posit that quibbling over what the evidence reveals is only part of the task of evaluating evidence. In the case of gender transition, where the denial of care will be experienced as a significant harm to the trans person, inaction – care refusal – must not be treated as a morally neutral option. Instead, care refusal must itself be regarded as having the potential to harm. Whether someone considering the ethics of gender-affirming care begins with an assumption that care provision or care denial ought to be, the status quo is, particularly in light of the vehemence of contemporary fights over access to gender-affirming care, more a question of values than it is of evidence.
Physicians often treat patients whose symptoms cannot be proven or diagnosed with “objective” data. Myriad forms of routine medical care rely solely or primarily on patient testimony; not only is gender dysphoria unexceptional in this regard as a diagnosis, hormonal and surgical intervention to alleviate distress and bring about patient well-being is similarly standard medical procedure. Psychological and psychiatric care can often only be provided on the basis of patients’ self-reported experiences of mental illness, as those illnesses may not generate measurable physical effects. For instance, conditions such as the excess breast tissue that indicates gynecomastia in cisgender men are similarly predicated on patient articulations of their own experiences and needs. In all these cases, self-related phenomena are clinically relevant, and although some may dismiss them as empirically intractable, doing so would clearly be a mistake.[39]
Healthcare systems also pose various significant hurdles to accessing forms of gender-affirming care, including their criteria for insurance coverage approval. Insurers’ criteria are unstandardized and often arbitrary. Yet, they profoundly shape the kind of care available, particularly given the economic precarity that prevents many trans people from paying for treatment out-of-pocket.[40] To secure coverage, trans individuals must frame their experience in accordance with insurers’ standards rather than medical standards alone.[41] The need to provide persuasive accounts to unlock care forces trans people to conform to specific, deficit-based descriptions of their identities as pathological and the ambiguous definition of medical necessity used by insurance companies.[42] This system reflects a form of testimonial injustice, effectively requiring trans people to present strategic narratives to obtain care and mold their needs to fit the stringent requirements of insurance. The disparate insurance criteria for gender-affirming care undermines existing forms of evidence — which are primarily based on testimonies. It treats the knowledge that trans people possess about their bodies as insufficiently credible to warrant medical autonomy.[43] This is an unjust standard of evidence. In this way, even well-meaning providers sometimes subject trans patients to arbitrary barriers to care purely on the basis of their gender identity.
Conclusion
All providers should understand the risk of testimonial injustice to trans people in healthcare contexts. This is particularly urgent for providers who treat trans patients. Since all providers will treat trans patients regardless of specialty, all healthcare practitioners should address testimonial injustice. Accordingly, they must work to counter the devaluation of trans testimonies, not just in individual patient and provider experi
Dolly’s Laugh: a meditation on recorded excess
No full textThis creative response is an attempt to understand our long-standing obsession with the moments that shouldn’t be in song recordings but somehow remain. Written while we were physically apart over the course of a few months, our dialogue responds to a desire to understand whether there is any meaning in these obsessions, whether they can teach us about sound and the musicians that produce them. We want to call attention to what is usually discarded – what happens before, after or in-between, what happens on top of – moments in excess of the track which break the performative bargain and reveal the multiple possibilities always contained within performance. The piece is accompanied by a soundpiece putting some of the recorded moments mentioned in dialogue with each other.
Notes on Contributors
Ruari Paterson-Achenbach is an interdisciplinary artist and researcher, currently undertaking their PhD in Music at the University of Cambridge. Their work thinks about sound and performance as vehicles for memory, resistance and temporal antagonism. Through a critical engagement with ‘Outsider Music,’ their PhD uncovers radical potential for creativity within and through non-normative social life. More broadly, their research interests include queer temporality, critical listening, and creative anarchism. Ruari was also a ‘New Creative’ and has produced works with and for the Institute of Contemporary Arts in London, the BBC and NTS Radio.
Sophie Marie Niang is a black feminist researcher from Paris, working at the intersection of cultural studies, black studies, and queer theory. She is currently a Junior Research Fellow in European Cultural Studies at Magdalene College, University of Cambridge. Her first book project explores black refusal and worldmaking in contemporary France, through a focus on rap, black women’s self narratives in film and literature, afrofeminist performance, and literary fiction. Her work is published in Sociology Compass, Feminist Review, and Modern & Contemporary France
Out of Baghdad!: Negotiating Loss, Longing, and Belonging in Aida Nadeem’s Work of the Iraqi Musical Avant-Garde
No full textIn 2005, Aida Nadeem produced Out of Baghdad!, a conglomeration of traditional Iraqi instrumentation, audio collection, and experimental vocalization. Nadeem’s work is described as rejecting the restrictions of western ideas of modernity, by utilizing traditional elements in a more contemporary framework. Produced in the aftermath of the 2003 United States-led invasion of Iraq, Nadeem’s work provides the central focus of this paper.
Constructing this paper as an intimate ethnography, the author utilizes personal interviews with close family members who grew up in Iraq to contextualize and ground Nadeem’s compositions, and they are used as a foundation for analysis of Nadeem’s music as being composed within the diaspora. This allows for a more fruitful analysis of how Nadeem’s work utilizes symbols central to life in Baghdad, such as date palms and the sounds of a copper market, to mark her work as indisputably Iraqi — and as she turns those symbols on their head to create something which can fit into the designation of talī‘a (الطّليعة), rather than as the simplified ‘Arab avant-garde’.
The author begins by outlining the term Arab avant-garde, including a discussion of the systematic exclusion of the “Arab” designation in better known avant-garde circles. The author then succinctly describes the contemporary political history of Iraq to highlight the importance of that which is Iraqi in the avant-garde. This framework provides the basis for Nadeem’s background and, in turn, the analysis of a few of Nadeem's compositions from her 2005 album, Out of Baghdad
New Jersey Teachers’ Professional Learning About Climate Change
Full text linkDuring the 2022-23 academic year, New Jersey became the first state in the United States to adopt learning standards that support climate change education K-12 across all subject areas, offering an ideal context for exploring the relationship between education and climate change. Although New Jersey has provided financial funding to support teachers in teaching about climate change, little is known about teachers’ preparedness to implement developmentally appropriate climate change instruction in K-12 settings. This study utilizes interviews from 50 New Jersey teachers who participated in a classroom observation study conducted during the 2023-24 academic year to describe their professional learning related to climate change. Though professional learning varied considerably across the dataset, most respondents indicated that self-directed learning was their primary mode of professional development about climate change, followed by attendance at workshops or webinars. Several participants reported having no access to professional development provided by their school or district on the topic, despite the introduction of standards. When asked about plans for future professional development related to climate change, the majority of interviewees asserted that they had plans, but these varied with their grade bands. The findings suggest that more coherent professional learning opportunities are needed to support teachers in integrating climate change into their teaching. More mechanisms should be implemented to acknowledge teachers’ self-directed learning on climate change
Licensing of Text for Generative AI: Learnings from Non-AI Licensing Practices
Full text linkModels (“LLMs”) are moving fast, fueled by developer demand for access to, and the ability to use, increasing amounts of high-quality textual data. With this constant demand for quality literary works come questions around how licensing practices can enable technological developments while preserving the contours of copyright law and sufficiently incentivizing human authorship of books, journalism, and other literary content for human readers and AI uses alike.
While some venture that licensing for generative AI purposes is “impossible,” many companies have negotiated partnerships with media publishers or publishing houses for generative AI uses. Meanwhile, others query whether there is a need to build or adjust licensing systems to better facilitate licensing of textual content, whether through regulatory updates, increased use of collecting societies, or augmenting data management infrastructure.
Before declaring the status quo of marketplace licensing insufficient, it makes sense to take stock of where we have been, where we are, and where we might be going. This short piece hypothesizes that some current bumps in generative AI licensing stem from uncertainty in an emerging market, not inherent difficulties in licensing at scale for professionally published content. Given that generative AI is still in its nascency, content licensing is not close to a one-size-fits-all standard. The time is ripe for marketplace developments, and experimentation in private arrangements between rightsholders and users. The Article also provides a brief primer in copyright principles of licensing regulation and overviews guideposts for collective management of content, based on experiences outside of AI. While voluntary collective licensing can play a valuable role in the AI licensing market, these guideposts may assist authors and other licensees as they consider whether, with whom, and on what terms to affiliate with a licensing intermediary
SEPHI of Exoplanets Kepler-504 b, Kepler-315 b and Kepler-315 c
No full textThe search for habitable exoplanets has improved with every passing year. New methods and advanced instrumentation with higher precision help find more habitable exoplanets and refine existing parameters of highly likely habitable exoplanets. This paper presents the Statistical-likelihood Exo-Planetary Habitability Index (SEPHI) values for Kepler-504 b (of star Kepler-504), Kepler-315 b, and Kepler-315 c (both revolving around star Kepler-315).1,2,3 SEPHI is based on the geometric mean of the likelihood Gaussian estimation of four different comparison criteria with Earth as the only place we know harboring life: Telluricity, Atmosphere and Planet Gravity, Surface Liquid Water, and Magnetic Field.4,5,6 The seven physical characteristics of exoplanets have been used to calculate those four criteria: planetary mass, planetary radius, orbital period, stellar mass, stellar radius, and stellar effective temperature. This is a follow-up to previously calculated ESI values for the three exoplanets mentioned above, with Kepler-504 b and Kepler-315 b having a high ESI of 71.23% and 69.44%, respectively.7 It has been found that Kepler-504 b (with a host M-type star (small red dwarf)) has a SEPHI value of 0, Kepler-315 b (with a host G-type star) has a SEPHI value of 0, and Kepler-315 c (with a host G-type star) has a SEPHI value of 0. Thus, more than a combination of host star type, the orbital radius of exoplanet, and the final ESI to determine probable habitability, a further in-depth analysis through SEPHI can help us confirm its actual habitability for Earth-based life