Graphic Pathographies as Ethical Texts: Autonomy and Agency in Narratives of Anorexia Nervosa.

Anorexia Nervosa

The diagnostic category of eating disorders encompasses anorexia nervosa, bulimia nervosa, and the heterogeneous group of eating disorders not otherwise specified, most prominent among which is binge-eating disorder, currently detailed in research criteria in DSM-IV-TR and under consideration for inclusion as a separate diagnosis. In recent decades researchers have increasingly appreciated the multifaceted contributions to the etiology and pathogenesis of eating disorders, including genetic, familial, developmental, and psychosocial influences. Comorbidity with other axis I and axis II disorders is common, and medical comorbidity is of particular significance because of marked nutritional impairments that often accompany these disorders. Although the evidence-based treatment literature is sparse, particularly for anorexia nervosa, progress has been made with respect to nutritional, psychosocial, and psychopharmacological interventions for these disorders, and a growing consensus among clinicians has resulted in practice guidelines that attend to each of these dimensions.

This study examined the impact of the COVID-19 pandemic on healthcare engagement for anorexia nervosa (AN) and bulimia nervosa (BN) in a large, geographically diverse population. This repeated monthly, cross-sectional study queried Military Health System records of individuals aged 10-21 before and during the pandemic (February 2019-January 2022). ICD-10 codes identified encounters for AN and BN. Monthly rates of care were modeled as the number of unique individuals with an ICD-10-identified eating disorder-related encounter per month divided by the enrolled population. Poisson regression analysis evaluated rates of care stratified by eating disorder, clinical setting, and sex. In a population of 1.76 million adolescents and young adults, 1629 individuals with AN or BN received care during the pre-pandemic period; 3256 received care during the pandemic. The monthly rate of care for females with AN during the pandemic increased in inpatient settings (adjusted relative risk [aRR]: 1.31 [1.16-1.49]) and outpatient settings (aRR: 1.42 [1.37-1.47]); monthly care rates in males with AN increased in the outpatient setting (aRR: 1.46 [1.28-1.67]). Females with BN had increased engagement in outpatient settings (aRR: 1.09 [1.03-1.16]); BN care for males showed no significant monthly changes during the pandemic period in either healthcare setting. With increased rates of AN and BN disorder-related care during the pandemic, screening for eating disorder symptomatology may allow for timely diagnosis and intervention in periods of heightened stress. Pandemic-related increases in healthcare engagement may strain limited resources, emphasizing a need to expand accessibility of clinical expertise. This study indicates that monthly rates of healthcare engagement during the COVID-19 pandemic for AN and BN varied based on clinical setting and sex in an adolescent and young adult population. The increased number of individuals seeking eating disorder-related care, especially outpatient care, attributed to heightened stressors necessitates accessible professionals with eating disorder clinical expertise.

This column uses the tools of normative ethics-analysis and argument-to provide a reasoned account of and to identify ethically justified responses by the psychiatrist to psychiatric inpatients' refusal of medical or surgical diagnostic work-up. There are three relevant ethical considerations when psychiatric inpatients refuse medical or surgical diagnostic tests: balancing autonomy with beneficence, surrogate decision making and confidentiality, and managing strong feelings. Assisted decision making and assent are key management strategies for promoting patients' autonomy and for protecting against adverse consequences of decision making.

Photo by Josh Riemer on Unsplash
 Introduction
 With the rapid advancements in neurotechnological machinery and improved analytical insights from machine learning in neuroscience, the availability of big brain data has increased tremendously. Neurological health research is done using digitized brain data.[1] There must be adequate data governance to secure the privacy of subjects participating in brain research and treatments. If not properly regulated, the research methods could lead to significant breaches of the subject’s autonomy and privacy. This paper will address the necessity for neuroprotection laws, which effectively govern the use of big brain data to ensure respect for patient privacy and autonomy.
 Background
 Artificial intelligence and machine learning can be integrated with neuroscience big brain data to drive research studies. This integrative technology allows patterns of electrical activity in neurons to be studied in detail.[2]Specifically, it uses a robotic system which can reason, plan, and exhibit biologically intelligent behavior. Machine learning is a method of computer programming where the code can adapt its behavior based on big brain data.[3] The big brain data is the collection of large amounts of information for the purpose of deciphering patterns through computer analysis using machine learning.[4] The information that these technologies provide is extensive enough to allow a researcher to read a patient’s mind. AI and machine learning technologies work by finding the underlying structure of brain data, which is then described by patterns known as latent factors, eventually resulting in an understanding of the brain’s temporal dynamics.[5]
 Through these technologies, researchers are able to decipher how the human brain computes its performances and thoughts. However, due to the extensive and complex nature of the data processed through AI and machine learning, researchers may gain access to personal information a patient may not wish to reveal. From a bioethical lens, tensions arise in the realm of patient autonomy. Patients are not able to control the transmission of data from their brains that is analyzed by researchers. Governing brain data through laws may enhance the extent of patient privacy in the case where brain data is being used through AI technologies.[6] A responsible approach to governing brain data would require a sophisticated legal structure.
 Analysis
 Impact on Patient Autonomy and Privacy 
 In research pertaining to big brain data, the consent forms do not fully cover the vast amounts of information that is collected. According to research, personal data has become the most sought out commodity to provide content to corporations and the web-based service industry. Unfortunately, data leaks that release private information frequently occur.[7] The storage of an individual’s data on technologies accessible on the internet during research studies makes it vulnerable to leaks, jeopardizing an individual’s privacy. These data leaks may cause the patient to be identified easily, as the degree of information provided by AI technologies are personalized and may be decoded through brain fingerprinting methods.[8]
 There has been an extensive growth in the development and use of AI. It is efficient in providing information to radiologists who diagnose various diseases including brain cancer and psychiatric disease, and AI assists in the delivery of telemedicine.[9] However, the ethical pitfall of reduced patient autonomy must be addressed by analyzing current AI technologies and creating more options for patient preference in how the data may be used. For instance, facial recognition technology[10] commonly used in health care produces more information than listed in common consent forms, threatening to undermine informed consent. Facial recognition software collects extensive data and may disclose more information than a person would prefer to provide despite being a useful tool for diagnosing medical and genetic conditions.[11] In addition, people may not be aware that their images are being used to generate more clinical data for other purposes. It is difficult to guarantee the data is anonymized. Consent requirements must include informing people about the complexity of the potential uses of the data; software developers should maximize patient privacy.[12] Furthermore, there is a “human element” in the use of AI technologies as medical providers control the use and the extent to which data is captured or accessed through the AI technologies.[13] People must understand the scope of the technology and have clear communication with the physician or health care provider about how the medical information will be used. 
 Existing Laws for Brain Data Governance 
 A strict system of defined legal responsibilities of medical providers will ensure a higher degree of patient privacy and autonomy when AI technologies and data from machine learning are used. Governing specific algorithmic data is crucial in safeguarding a patient’s privacy and developing a gold standard treatment protocol following the procurement of the information.[14] Certain AI technologies provide more data than others, and legal boundaries should be established to ensure strong performance, quality control, and scope for patient privacy and autonomy. For instance, currently AI technologies are being used in the realm of intensive neurological care. However, there is a significant level of patient uncertainty about how much control patients have over the data’s uses.[15] Calibrated legal and ethical standards will allow important brain data to be securely governed and monitored.
 Once brain signals are recorded and processed from one individual, the data may be merged with other data in Brain Computer Interface Technology (BCI).[16] To ensure a right and ability to retrieve personal data or pull it from the collection, specific regulations for varying types of data are needed.[17] The importance of consent and patient privacy must be considered through giving patients a transparent view of how brain data is governed.[18] The legal system must address discriminatory issues and risks to patients whose data is used in studies. Laws like the General Data Protection Regulation (GDPR) and the California Consumer Privacy Protection Act (CCPA) can serve as effective models to protect aggregated data. These laws govern consumer information and ensure the compliance when personal data is collected.[19] California voters recently approved expansion of the CCPA to health data. The Washington Privacy Act, which would have provided rights to access, change, and withdraw personal data, failed to pass. Other states should improve privacy as well,[20] although a federal bill would be preferable. Scientists at the Heidelberg Academy of Sciences argue for data security to be governed in a manner that balances patient privacy and autonomy with the commercial interests of researchers.[21] The balance could be achieved through privacy protections like those in the Washington Privacy Act. Although the Health Insurance Portability and Accountability Act (HIPAA) provides an overall framework to deter the likelihood of dangers to patient protection and privacy, more thorough laws are warranted to combat pervasive data transfer and analysis that technology has brought to the health care industry.[22] Breaches of patient privacy under current HIPAA regulations include releasing patient information to a reporter without their consent and sending HIV data to a patient’s employer without consent.[23] HIPAA does not cover information being shared with outside contractors who do not have an agreement with technology companies to keep patient data confidential. HIPAA regulations also do not always address blatant breaches on patient data confidentiality.[24] Patients must be provided with methods to monitor the data being analyzed to be able to view the extent of private information being generated via AI technologies. In health research, the medical purposes of better diagnosis, earlier detection of diseases, or prevention are ethical justifications for the use of the data if it was collected with permission, the person understood and approved the uses of the data, and the data was deidentified.
 A standard governance framework is required in providing the fairest system of care to patients who allow their brain data to be examined. Informed consent in the neuroscience field could reaffirm the privacy and autonomy of patients by ensuring that they understand the type of information collected. Laws also could protect data after a patient’s death. Malpractice in the scope of brain data could give people a cause of action critical in safeguarding patient’s rights. Data breach lawsuits will become common but generally do not cover deidentified data that becomes part of big data collection. A more synchronized approach to the collection and consent process will encourage an understanding of how big data is used to diagnose and treat patients. Some altruistic people may even be more likely to consent if they know the largescale data collection is helpful to treat and diagnose people. Others should have the ability to opt out of sharing neurological data, especially when there is not certainty surrounding deidentification.[25]
 Conclusion
 Artificial intelligence and machine learning technologies have the potential to aid in the diagnosis and treatment of people globally by extracting and aggregating brain data specific to individuals. However, the secure use of the data is necessary to build trust between care providers and patients, as well as in balancing the bioethical principles of beneficence and patient autonomy. We must ensure the highest quality of care to patients, while protecting their privacy, informed consent, and clinical trust. More sophis

Contingency management in stipulating weight gain is routinely used in the treatment of anorexia nervosa, however, empirical investigations concerning its effectiveness have been scarce. This systematic review was conducted according to the PRISMA statement. Of N=973 hits, 42 full-texts were included in the qualitative synthesis (11 theoretical texts, 19 case reports, 12 descriptive, cohort, and controlled trials). A central topic in the included publications concerns the enhancement of patients' autonomy through participation in the contingency management process. This heightened autonomy is achieved by using contingency contracts. Positive short-term effects on weight gain were shown, whereas follow-up results were heterogeneous. Although contingency contracts are widely used in clinical practice, our systematic review shows that empirical evidence on underlying mechanisms and efficacy is still scarce. Using an explicit treatment contract can enhance patients' motivation, compliance, and autonomy. Clinical practice should see further development including innovative motivation enhancing and conflict dissolving techniques in addressing the pronounced ambivalence often shown by patients with anorexia nervosa.

Inequitable access to deceased donor organs for transplantation has received considerable scrutiny in recent years. Emerging evidence suggests patients with impaired decision-making capacity (IDC) face inequitable access to transplantation. The “Ethical and Legal Issues” working group of the European Society of Transplantation undertook an expert consensus process. Literature relating to transplantation in patients with IDC was examined and collated to investigate whether IDC is associated with inferior transplant outcomes and the legitimacy of this healthcare inequality was examined. Even though the available evidence of inferior transplant outcomes in these patients is limited, the working group concluded that access to transplantation in patients with IDC may be inequitable. Consequently, we argue that IDC should not in and of itself be considered as a barrier to either registration on the transplant waiting list or allocation of an organ. Strategies for non-discrimination should focus on ensuring eligibility is based upon sound evidence and outcomes without reference to non-medical criteria. Recommendations to support policy makers and healthcare providers to reduce unintended inequity and inadvertent discrimination are set out. We call upon transplant centres and national bodies to include data on decision-making capacity in routine reporting schedules in order to improve the evidence base upon which organ policy decisions are made going forward.

COVID-19, Substance Use, Anorexia Nervosa, 22q11.2 Deletion Syndrome, and Stress.

A Commentary on “Eating Disorders and the Rorschach” (Guinzbourg de Braude et al., 2021)

ObjectiveSince efforts to stage anorexia nervosa (AN) revealed the existence of various presentations, research into the long-standing subgroup has increased. A change in treatment has been proposed with the intention to use more effective evidence-based methods that target symptoms of the long-standing presentation and improve prognosis. A barrier in achieving this goal in both research and clinical contexts is the lack of a consistent label and definition. This makes the ability to assess, recruit and treat these presentations difficult. Investigations into how this subgroup may be differentiated from other stages of the disorder have included the opinions of practitioners and researchers with little consideration for the perspectives of individuals living with this illness. It was the aim of the current study to investigate lived experience perspectives on the way long-standing AN should be labeled and defined.MethodsData were collected through a semi-structured interview within a narrative inquiry framework. This approach is beneficial when examining processes that occur over time, such as investigations into a long-term illness. A total of 11 women with a presentation of long-standing AN participated in an interview. Data were divided into two categories for analysis based on the association to labeling or defining the features of the long-standing AN illness.ResultsTwo labels emerged during the analysis with participants describing a preference for the use of ‘severe and enduring’ over ‘chronic’ when referring to their presentation of AN. When defining the illness, the most preferred criterion was illness duration with mixed perspectives for the use of previously failed treatment attempts. Participants described a consistent dislike for the use of low body weight as a feature in the defining of the illness.ConclusionsThe current study describes how individuals with a lived experience prefer to have the long-standing AN presentation labeled and defined. It is the hope of the authors that these insights will be adopted into any guidelines developed to ensure individuals most affected by this disorder have a voice and continue to be given the opportunity to contribute to topics related to their illness.Plain English summaryAnorexia nervosa (AN) is a complex illness that has been divided into stages based on the severity of symptoms. Little is known about the AN stage that persists over lengthy periods of time with research pursuits underway to determine characteristics that allow this disorder to persevere. A barrier in researching and treating these individuals is the lack of a consistent label to refer to these presentations and criteria that will allow us to identify this stage of AN. The aim of the current study was to determine how individuals with a lived experience of long-standing AN prefer to have their illness labeled and defined. A total of 11 women who had experienced this stage of AN were interviewed with the majority of participants reporting to prefer the label ‘severe and enduring’ over the term ‘chronic’. Additionally, most of the participants had a preference for defining their illness based on the duration of time the illness had persisted with mixed opinions for using the number of previously unsuccessful treatment attempts as criterion. The authors are hopeful that any guidelines established for labeling and defining long-standing AN will incorporate the perspectives of individuals with a lived experience of the illness.

There is a clear need for interventions that reduce moral distress among healthcare providers (HCPs), given the high prevalence of moral distress and the far-ranging negative consequences it has for them. Healthcare ethics consultants are frequently called upon to manage moral distress, especially among nursing staff. Recently, researchers have both broadened the definition of moral distress and demarcated subcategories of the phenomenon with the intent of creating more targeted and effective interventions. One of the most frequently occurring subcategories of moral distress in this new taxonomy has been labeled "moral-constraint distress," though scholars have argued that not all constraints on HCPs' moral agency are inappropriate given the often-competing healthcare values of patients, families, and clinical staff. To attempt to reduce the instances of moral distress in cases in which the constraints on HCPs' moral agency are justified, we propose an intervention that focuses on shifting the HCPs' "frame of reference" on moral-constraint distress, teaching HCPs how to distinguish unjustified and justified constraints on their moral agency. The anchors of this blueprint for reducing moral-constraint distress are the philosophical concepts of "values pluralism" and "values imposition." The rationale for this intervention is that, in situations where the constraint on moral agency is justified but the experience of moral distress could nevertheless be severe, the emphasis needs to be on helping the HCP to "think differently" rather than "act differently."

Validation of a Food Frequency Questionnaire for Determining Calcium and Vitamin D Intake by Adolescent Girls with Anorexia Nervosa

Infant Feeding Experiences of Women Who Recovered From Anorexia Nervosa

<scp>COVID</scp>‐19 and implications for eating disorders

Genetic testing has the potential to transform the prevention, treatment, and management of anorexia nervosa (AN) as it has for other conditions. However, healthcare providers require the knowledge and openness to implement genetic testing effectively. This study had two main objectives, first, to determine the genomic literacy of those treating AN in the United States and second to assess the viewpoints of these healthcare providers on genetic testing and research, and the influence of genetics on AN. A mixed methods approach combining the GKnowM, a validated genomic literacy tool, Likert-like statements and thematic analysis of free-text responses was used. Participant consent, dissemination of the survey, and response collection were performed through Qualtrics. Participant's average GKnowM score was 19.6 (SD=2.8) on a scale of 0-26 (75% correct). Positive correlations were identified between GKnowM score and responses to questions about the influence of genetics on AN and the importance of genetics research, and negative correlations were found between age and years in practice and views on the current value of genetic testing. In addition, participants communicated a need for more genetics learning opportunities, and the challenge of accessing and paying for quality AN treatment in the United States. The results of this study indicate a need for targeted genetics and genomics learning opportunities for healthcare providers. Improving genomic literacy has the potential to positively influence attitudes toward genetic research and testing and empower healthcare providers to engage in productive and scientifically sound discussions with their patients and society as a whole.