Public perspectives on increased data sharing in health research in the context of the 2023 National Institutes of Health Data Sharing Policy.

The National Institutes of Health (NIH) is the largest public research funder in the world. In an effort to make publicly funded data more accessible, the NIH established a new Data Management and Sharing (DMS) Policy effective January 2023. Though the new policy was available for public comment, the patient perspective and the potential unintended consequences of the policy on patients' willingness to participate in research have been underexplored. This study aimed to determine: (1) participant preferences about the types of data they are willing to share with external entities, and (2) participant perspectives regarding the updated 2023 NIH DMS policy. A cross-sectional, nationally representative online survey was conducted among 610 English-speaking US adults in March 2023 using Prolific. Overall, 50% of the sample identified as women, 13% as Black or African American, and 7% as Hispanic or Latino, with a mean age of 46 years. The majority of respondents (65%) agreed with the NIH policy, but racial differences were noted with a higher percentage (28%) of Black participants indicating a decrease in willingness to participate in research studies with the updated policy in place. Participants were more willing to share research data with healthcare providers, yet their preferences for data sharing varied depending on the type of data to be shared and the recipients. Participants were less willing to share sexual health and fertility data with health technology companies (41%) and public repositories (37%) compared to their healthcare providers (75%). The findings highlight the importance of adopting a transparent approach to data sharing that balances protecting patient autonomy with more open data sharing.

Ethical considerations for artificial intelligence in dermatology: a scoping review.

The field of dermatology is experiencing the rapid deployment of artificial intelligence (AI), from mobile applications (apps) for skin cancer detection to large language models like ChatGPT that can answer generalist or specialist questions about skin diagnoses. With these new applications, ethical concerns have emerged. In this scoping review, we aimed to identify the applications of AI to the field of dermatology and to understand their ethical implications. We used a multifaceted search approach, searching PubMed, MEDLINE, Cochrane Library and Google Scholar for primary literature, following the PRISMA Extension for Scoping Reviews guidance. Our advanced query included terms related to dermatology, AI and ethical considerations. Our search yielded 202 papers. After initial screening, 68 studies were included. Thirty-two were related to clinical image analysis and raised ethical concerns for misdiagnosis, data security, privacy violations and replacement of dermatologist jobs. Seventeen discussed limited skin of colour representation in datasets leading to potential misdiagnosis in the general population. Nine articles about teledermatology raised ethical concerns, including the exacerbation of health disparities, lack of standardized regulations, informed consent for AI use and privacy challenges. Seven addressed inaccuracies in the responses of large language models. Seven examined attitudes toward and trust in AI, with most patients requesting supplemental assessment by a physician to ensure reliability and accountability. Benefits of AI integration into clinical practice include increased patient access, improved clinical decision-making, efficiency and many others. However, safeguards must be put in place to ensure the ethical application of AI.

The use of artificial intelligence (AI) in dermatology is rapidly increasing, with applications in dermatopathology, medical dermatology, cutaneous surgery, microscopy/spectroscopy and the identification of prognostic biomarkers (characteristics that provide information on likely patient health outcomes). However, with the rise of AI in dermatology, ethical concerns have emerged. We reviewed the existing literature to identify applications of AI in the field of dermatology and understand the ethical implications. Our search initially identified 202 papers, and after we went through them (screening), 68 were included in our review. We found that ethical concerns are related to the use of AI in the areas of clinical image analysis, teledermatology, natural language processing models, privacy, skin of colour representation, and patient and provider attitudes toward AI. We identified nine ethical principles to facilitate the safe use of AI in dermatology. These ethical principles include fairness, inclusivity, transparency, accountability, security, privacy, reliability, informed consent and conflict of interest. Although there are many benefits of integrating AI into clinical practice, our findings highlight how safeguards must be put in place to reduce rising ethical concerns.

The Characteristics and Ethics of Sham Surgeries: A Systematic Review of Randomized Controlled Trials.

OBJECTIVE: We sought to perform a large-scale systematic review across all sham-controlled studies currently present in the literature to better characterize the ethical considerations of these studies. BACKGROUND: Innovative surgical procedures are often introduced into the clinical setting without the robust clinical trials required for medicinal treatments. Sham surgeries serve as placebos by performing all steps of a surgical intervention aside from those deemed therapeutically necessary. Yet, sham trials are underutilized because of ethical controversy. METHODS: Ovid MEDLINE was queried through April 2022 with combinations of the Medical Subject (MeSH) headings and keywords including, but not limited to, "surgery," "endoscopy," "randomized controlled trial," and "sham procedure." Primary outcomes were surgical indications and characteristics, outcome measurements, and whether the investigational treatment was offered to the sham cohort. RESULTS: One hundred seventy-two articles fit our inclusion criteria, with gastrointestinal pathologies being the most common surgical indication. Participants, personnel, and outcome assessment were all blinded in 8.7% of trials (n=15). Study populations included adult subjects (age ≥18) in 170 studies (98.8%), and two involved children. The most common level of dissection and type of anesthesia were deep (n=66, 38.4%) and general (n=49, 28.5%), respectively. An open surgical approach was utilized in 20.9% of studies (n=36). Primary outcomes were objective in 75 studies (43.6%) and subjective in 97 (56.4%), 62 of which used validated outcome measures (36.0%). Four trials explicitly did not offer the surgery to the sham arm (2.3%), whereas 106 had no mention of whether the intervention was offered (61.6%). CONCLUSIONS: Our systematic review of 172 randomized, sham-controlled trials highlights the ethical considerations that must be considered in these studies, namely the importance of transparent study design and objective outcome reporting, the difficulty of informed consent, and the inherent risks associated with surgical interventions.

Ethical Guidance on Family Caregiving, Support, and Visitation in Hospitals and Residential Health Care Facilities, Including During Public Health Emergencies: an American College of Physicians Position Paper.

Public health emergencies create challenges for the accommodation of visitors to hospitals and other care facilities. To mitigate the spread of COVID-19 early in the pandemic, health care institutions implemented severe visitor restrictions, many remaining in place more than 2 years, producing serious unintended harms. Visitor restrictions have been associated with social isolation and loneliness, worse physical and mental health outcomes, impaired or delayed decision-making, and dying alone. Patients with disabilities, communication challenges, and cognitive or psychiatric impairments are particularly vulnerable without caregiver presence. This paper critically examines the justifications for, and harms imposed by, visitor restrictions during the COVID-19 pandemic and offers ethical guidance on family caregiving, support, and visitation during public health emergencies. Visitation policies must be guided by ethical principles; incorporate the best available scientific evidence; recognize the invaluable roles of caregivers and loved ones; and involve relevant stakeholders, including physicians, who have an ethical duty to advocate for patients and families during public health crises. Visitor policies should be promptly revised as new evidence emerges regarding benefits and risks in order to prevent avoidable harms.

"Ruptured selves: moral injury and wounded identity".

Moral injury is the trauma caused by violations of deeply held values and beliefs. This paper draws on relational philosophical anthropologies to develop the connection between moral injury and moral identity and to offer implications for moral repair, focusing particularly on healthcare professionals. We expound on the notion of moral identity as the relational and narrative constitution of the self. Moral identity is formed and forged in the context of communities and narrative and is necessary for providing a moral horizon against which to act. We then explore the relationship between moral injury and damaged moral identities. We describe how moral injury ruptures one's sense of self leading to moral disorientation. The article concludes with implications for moral repair. Since moral identity is relationally formed, moral repair is not primarily an individual task but requires the involvement of others to heal one's identity. The repair of moral injury requires the transformation of a moral identity in community.

Separate But Not Equal? A Cross-Sectional Study of Segregation by Payor Mix in Academic Primary Care Clinics.

BACKGROUND: At some US Academic Health Centers (AHCs), patients with predominantly Medicaid insurance are seen in one clinic and patients with other insurance are seen in another. The extent of this practice and implications are unknown. OBJECTIVE: To estimate the proportion of AHCs that have at least two primary care internal medicine clinics that differ substantially in proportion of patients with Medicaid and to compare patient demographic, staffing, and operational features. PARTICIPANTS: General internal medicine chiefs and clinic directors at 40 randomly selected US AHCs plus the top 10 AHCs in terms of NIH funding. MAIN MEASURE: An AHC was classified as maintaining clinics that differed substantially in the proportion of patients with Medicaid if any two differed by ≥ 40% (absolute). Other criteria were used for pre-specified secondary analyses (e.g., ≥ 30%). KEY RESULTS: Thirty-nine of 50 AHCs (78%) participated. Four of 39 (10%; 95% CI, 3 to 24%) had two clinics differing by ≥ 40% in the proportion of patients with Medicaid, eight (21%; 95% CI, 9 to 36%) had clinics differing by ≥ 30%, and 15 (38%; 95% CI, 23 to 55%) had clinics differing by ≥ 20%. Clinics with more patients with Medicaid by any of the three criteria were more likely to employ resident physicians as providers of longitudinal care (with faculty supervision) and more likely to have patients who were Black or Hispanic. CONCLUSIONS: Some US AHCs maintain separate clinics defined by the proportion of patients with Medicaid. Clinics with a higher proportion of patients insured by Medicaid are more likely to employ residents (with faculty oversight), feature residents as providers of longitudinal care, and serve patients who are Black and Hispanic. Further research is needed to understand why some AHCs have primary care clinics distinguishable by insurance mix with the goal of ensuring that racism and discrimination are not root causes.

Moral Injury in Health Care: Identification and Repair in the COVID-19 Era.

Frontline health-care workers experienced moral injury long before COVID-19, but the pandemic highlighted how pervasive and damaging this psychological harm can be. Moral injury occurs when individuals violate or witness violations of deeply held values and beliefs. We argue that a continuum exists between moral distress, moral injury, and burnout. Distinguishing these experiences highlights opportunities for intervention and moral repair, and may thwart progression to burnout.

A Report of Physicians' Beliefs about Physician-Assisted Suicide: A National Study.

The goal of this work is to assess the beliefs of US physicians about the national legalization of physician-assisted suicide (PAS). We sent a survey to 1000 randomly chosen physicians from around the US. Our survey indicates that 60% of physicians thought PAS should be legal, and of that 60%, 13% answered "yes" when asked if they would perform the practice if it were legal. Next, 49% of physicians agreed that most patients who seek PAS do so because of pain, and 58% agreed that the current safeguards in place for PAS, in general, are adequate to protect patients. With respect to specific safeguards, 60% disagreed with the statement that physicians who are not psychiatrists are adequately trained to screen for depression in patients seeking PAS, and 60% disagreed with the idea that physicians can predict with certainty whether a patient seeking PAS has 6 months or less to live. Finally, about one-third (30%) of physicians thought that the legalization of PAS would lead to the legalization of euthanasia, and 46% agreed that insurance companies would preferentially cover PAS over possible life-saving treatments if PAS was legalized nationally. Our survey results suggest several conclusions about physicians' beliefs about PAS. The first is that there is a discrepancy between willingness to endorse and willingness to practice PAS. Second, physicians are generally misinformed with regard to why patients seek PAS, and they are uncertain about the adequacy of safeguards. Third, physicians are still wary of the slippery slope with respect to the legalization of PAS nationwide.

Pros and Cons of Physician Aid in Dying.

The question of a physician's involvement in aid in dying (or "assisted suicide") is being debated across the country. This article adopts no one position because its authors hold contrasting views. It aims instead to articulate the strongest arguments in favor of aid in dying and the strongest arguments opposed. It also addresses relevant terminology and reviews the history of its legalization in the United States.

How Should Clinicians Respond When Different Standards of Care Are Applied to Undocumented Patients?

A challenge in caring for patients in resource-poor settings is the ethical discomfort and discouragement clinicians might experience when they're unable to provide optimal care due to lack of resources. This case, in which a resident is faced with rationalizing substandard care for certain classes of patients, probably represents the top of a slippery slope. This article argues that physicians should identify and advocate for optimal care for each patient. Moreover, physicians should advocate to improve the health system that allows for substandard care. Physicians should disclose to patients all available evaluation and treatment options, even those that seem cost prohibitive or unrealistic for some other reason. Transparency and objectivity in the patient-clinician relationship require good communication skills and are central to avoiding harm.

How Do Medicalization and Rescue Fantasy Prevent Healthy Dying?

Before antibiotics, cardiopulmonary resuscitation (CPR), and life-sustaining technologies, humans had little choice about the timing and manner of their deaths. Today, the medicalization of death has enabled patients to delay death, prolonging their living and dying. New technology, the influence of the media, and medical professionals themselves have together transformed dying from a natural part of the human experience into a medical crisis from which a patient must be rescued, often through the aggressive extension of life or through its premature termination. In this paper, we examine problematic forms of rescue medicine and suggest the need to rethink medicalized dying within the context of medicine's orientation to health and wholeness.