AMA journal of ethics最新文献

Electronic health records (EHRs) enable patients to access their health records anytime, from anywhere with internet connectivity. Yet not all Americans benefit from these innovations. EHRs can be hard to access for people with a range of disabilities. This lack of access perpetuates inequity and, thus, demands ethical and legal attention. Some federal laws and regulations require accessible EHRs, but even these protections can fall short. This article argues that more clearly defined obligations for EHR developers and clinicians are necessary.

Electronic health records (EHRs) enable patients to access their health records anytime, from anywhere with internet connectivity. Yet not all Americans benefit from these innovations. EHRs can be hard to access for people with a range of disabilities. This lack of access perpetuates inequity and, thus, demands ethical and legal attention. Some federal laws and regulations require accessible EHRs, but even these protections can fall short. This article argues that more clearly defined obligations for EHR developers and clinicians are necessary.

Patient-subjects' participation in an Undiagnosed Diseases Network (UDN) protocol can afford access to innovative diagnostic techniques, especially in genomic medicine, which can shorten the time it takes to accurately diagnose a so-called "medical mystery." But UDN research processes can be complex and involve many variables, which can suggest to some patient-subjects that having enrolled in a UDN protocol was not worthwhile. This commentary on a hypothetical case rife with diagnostic ambiguity offers a dynamic model of consent that can both facilitate prospective UDN patient-subjects' assessment of potential risks and benefits of participating in diagnostic research and be a source of community engagement.

Patients whose conditions are undiagnosed face stress and limited, delayed access to interventions that address their specific needs. This commentary on a hypothetical case describes key ethical values that tend to conflict when clinicians try to care for patients with undiagnosed conditions and underscores the need for equitable, precise care plans when the sources and causes of patients' illness experiences are yet unknown.

The Undiagnosed Diseases Network (UDN) exists at an intersection of diagnostic research and clinical care and has 2 main goals: to advance diagnostic science and to facilitate accurate diagnoses in individual patient-participants with rare conditions or so-called "medical mysteries." The value of the UDN's translational research and clinical application model and of the results it produces derive from whether and to what extent the UDN achieves its 2 goals. This article considers criteria currently used to assess achievement of those goals, identifies their merits and drawbacks, and offers strategies by which the UDN might further advance diagnostic science and individual patient-participants' interests.

Structural determinants of health (SDoH) screening is key to good pediatric care, but fear of life-altering consequences can prevent adults from disclosing information, while time constraints disincentivize clinicians from addressing some awkward but important SDoH topics relevant to good care planning and management. Transparency, clarity, and a nonjudgmental attitude can help cultivate safe multidisciplinary communication and openness during a clinical encounter. Even more important than screening for SDoH is responding to children's unmet needs that screening reveals, which is the focus of this commentary on a case.

Unmet social and structural needs negatively influence children's health outcomes. Even in pediatric health systems in the United States that have implemented social needs screening programs, little guidance exists about best practices for how clinical teams should respond to children's unmet needs. This commentary on a case discusses ethical principles and caregivers' perspectives that can be used to guide best practices for screening and resource referral.

Medicaid provides health insurance for nearly 4 in 10 children in the United States, but this coverage can be unstable as a result of annual eligibility redetermination requirements. After the continuous Medicaid coverage mandate during the COVID-19 pandemic ended in March 2023, states were required for the first time to publicly report standardized metrics on terminations and renewals resulting from eligibility redeterminations. Our understanding of redeterminations and their contribution to coverage gaps had been constrained by data limitations, but states' reporting practices offered researchers and policymakers key insights into these processes and associated coverage outcomes. This article canvasses some of those insights and suggests how federal reporting requirements could be amended to offer actionable insights into redetermination processes.

The work of physician Abraham Jacobi was prominent in development of the field of pediatrics. He envisioned clinicians acting as caretakers and advocates for children and families, especially those who were poor. This article summarizes his work as presaging today's appreciation of many structural drivers of children's health.