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The capacity for wonder (CfW) is a personal disposition related to lifelong learning and moral character development, two highly valued characteristics of health professionals. We previously developed and validated a CfW measure among college students. Here we describe how the scale performs among medical students.We invited all students at a top-tier U.S. medical school (276 students completed the survey for an overall response rate of 58%. Factor analysis resulted in a 10-item scale with an alpha of 0.79 and an eigen value of 3.57. Factor loadings ranged from 0.43 to 0.77. The mean total score was 39.3 (SD = 8.9) out of a possible high score of 60. Total scores varied by year in school with significantly lower scores among 2nd year students (32.9 vs. 41.5;We confirmed the reliability of a 10-item CfW scale in 4 cohorts of medical students. Results suggest that the 2nd year of medical school poses the greatest risk to students' capacity for wonder. Efforts should be made to understand this phenomenon and develop interventions to mitigate it. Future research should explore the validity of the CfW scale, its utility in evaluating interventions designed to cultivate the capacity for wonder, its applicability to other groups of health professionals, and its association with ethical decision-making and practice.

INTRODUCTION: Routine prenatal screening ultrasounds primarily serve to diagnose major fetal anomalies which may prompt further testing and inform clinical decision-making, including possible pregnancy termination. Meanwhile, expectant parents may view the ultrasound experience and information gained differently from their clinicians. In this setting, how to best counsel patients, especially regarding the increasing findings of indeterminant clinical significance, is unclear. Greater understanding of women’s views before undergoing their ultrasound may help to guide anticipatory counseling about the purpose of screening and interpretation of results. METHODS: We surveyed 289 patients presenting for scheduled prenatal ultrasounds at an academic tertiary care center. Discrete and open-ended questions assessed views surrounding the receipt of abnormal results and management of the pregnancy once fetal anomalies are detected. Qualitative responses were analyzed using thematic analysis. RESULTS: Most (95%) desired information about abnormal sonographic findings, although only half would consider pregnancy termination for anomalies. Reasons for wanting return of abnormal results included preparedness, valuing knowledge, and to a lesser extent, informing decision-making. When considering potential termination as a result of ultrasound findings, participants’ rationales demonstrated deontological (seeing termination as inherently impermissible or permissible), relational (duties arising from the role of being a mother), and consequentialist (weighing harms and benefits) reasoning. CONCLUSION: This study highlights women’s perceptions of prenatal ultrasounds as an inherently valuable source of information and preparedness, beyond their role in informing clinical decision-making. Identifying the ethical constructs underpinning patients’ perspectives may help direct development of counseling tools responsive to individual needs and values regarding prenatal ultrasound findings.

Background Collateral findings in pragmatic clinical trials are findings that may have implications for patients’ health but were not generated to address a trial’s primary research questions. It is uncertain how best to communicate these collateral findings to patients. Objectives To determine how reactions to a letter communicating collateral findings relate to who signed the letter, the type of finding, or whether the letter specified that the finding arose from a pragmatic clinical trial. Research Design Web-based survey experiment using a between-subjects design in which respondents were randomly assigned within education strata to view and respond to 1 of 16 hypothetical scenarios. Subjects Adults recruited from an online panel constructed from a probability sample of US-based postal addresses. Measures The primary outcomes were the action the respondent would take next (i.e., contact a doctor immediately or something else) and the respondent’s emotional reactions (i.e., all positive, all negative, mixed, or none). Results A total of 4080 respondents had analyzable data. Although some effects were statistically significant (P < .05), none exceeded a prespecified threshold for policy relevance (15 or more percentage points). Ratings of letter clarity and level of understanding were lower for letters that included a description of the clinical trial. Conclusions Signatory and level of detail about collateral findings did not substantially affect people’s intentions to take the recommended action of contacting their doctor. Deciding whether to include a description of the pragmatic clinical trial requires a trade-off between transparency and more difficulty understanding the contents of the letter. Supplementary Information The online version contains supplementary material available at 10.1007/s11606-021-07087-8.

The impact of host genomics on an individual's susceptibility, immune response, and risk of severe outcomes for a given infectious pathogen is increasingly recognized. As we uncover the links between host genomics and infectious disease, a number of ethical, legal, and social issues need to be considered when using that information in clinical practice or workforce decisions. We conducted a survey of the clinical staff at 10 federally funded Regional Ebola and Other Special Pathogen Treatment Centers to understand their views regarding the ethical, legal, and social issues related to host genomics and the administrative and clinical functions of high-level isolation units. Respondents overwhelmingly agreed that genomics could provide valuable information to identify patients and employees at higher risk for poor outcomes from highly infectious diseases. However, there was considerable disagreement about whether such data should inform the allocation of scarce resources or determine treatment decisions. While most respondents supported a confidential employer-based genomic testing system to inform individual employees about risk, respondents disagreed about whether such information should be used in staffing models. Respondents who thought genomic information would be valuable for patient treatment were more willing to undergo genetic testing for staffing purposes. Most respondents felt they would benefit from additional training to better interpret results from genetic testing. Although this study was completed before the COVID-19 pandemic, the responses provide a baseline assessment of provider attitudes that can inform policy during the current pandemic and in future infectious disease outbreaks.

Infectious disease outbreaks highlight the importance of trust in public health authorities to avoid fear and improve adherence to recommendations. There is currently no established and validated measure for trust in public health authorities. We aimed to develop and validate an instrument that measures trust in public health authorities and to assess the association between trust in public health authorities and vaccine attitudes. We developed 20 items to measure trust in public health authorities. After implementing a survey in January 2020, we investigated relationships between the items, reduced the number of items, and identified latent constructs of the scale. We assessed variability in trust and how trust was associated with vaccine attitudes, beliefs, and self-reported vaccine acceptance. The pool was reduced to a 14-item trust in public health authorities scale and we found that this trust model was strongly associated with acceptance of vaccines. Our scale can be used to examine the relationship between trust in public health authorities and adherence to public health recommendations. The measure needs to be validated in other settings to determine whether they are associated with other areas where the public question public health authority recommendations.

We have never been so aware of masks. They were in short supply in the early days of COVID-19, resulting in significant risk to health care workers. Now they are highly politicized with battles about mask-wearing protocols breaking out in public. Although masks have obtained a new urgency and ubiquity in the context of COVID-19, people have thought about both the literal and metaphorical role of masks in medicine for generations. In this paper, we discuss three such metaphors—the masks of objectivity, of infallibility, and of benevolence—and their powerful role in medicine. These masks can be viewed as inflexible barriers to communication, contributing to the traditional authoritarian relationship between doctor and patient and concealing the authenticity and vulnerability of physicians. COVID masks, by contrast, offer a more nuanced and morally complex metaphor for thinking about protecting people from harm, authentic and trustworthy communication, and attention to potential inequities both in and beyond medical settings. We highlight the morally relevant challenges and opportunities that masks evoke and suggest that there is much to be gained from rethinking the mask metaphor in medicine.

Scholars from a range of disciplines including medicine, sociology, psychology, and philosophy have addressed the concepts of ambiguity and uncertainty in medical practice and training. Most of this scholarship has been descriptive, focusing on defining and measuring ambiguity and uncertainty tolerance or tracking clinicians’ responses to ambiguous and uncertain situations. Meanwhile, scholars have neglected some fundamental normative questions: Is tolerance of uncertainty good; if so, to what extent? Using a philosophical approach to these questions, we show that neither tolerance nor intolerance of uncertainty is necessarily a good or bad trait. Rather, both tolerance and intolerance of uncertainty can give physicians advantages while at the same time exposing them to pitfalls in clinical practice. After making this case, we argue that cultivating certain virtues—like courage, diligence, and curiosity—could help clinicians avoid the dangers of excessive tolerance and intolerance of uncertainty. Finally, we suggest that medical educators develop curricula and career counseling beginning with matriculation and proceeding through specialty choice and residency training that explicitly address trainees’ responses to clinical uncertainty. These programs should encourage trainees, students and residents, to be mindful of their reactions to uncertainty and help them develop virtues that will allow them to avoid the hazards of extreme tolerance or intolerance of uncertainty.

Objectives: We aimed to elucidate public values regarding the use of genomics to improve vaccine development and use (vaccinomics). Methods: Adults ≥18 years-old were recruited through social media and community organizations, and randomly assigned to one of four nested discussion groups in Boulder, CO and Baltimore, MD. Participants rated their confidence in vaccine safety and effectiveness prior to and after discussing vaccinomics. Before departing, they prioritized funding for vaccinomics versus federal priorities (vaccine safety and efficacy, new vaccines, and free vaccines) and chronic diseases (cancer, heart disease, and diabetes). Grounded Theory-influenced methods were used to identify themes. Results: Participants broadly supported vaccinomics. Emergent themes: concerns about reduced privacy/confidentiality, increased genetically based stigma/discrimination, and reduced agency to make vaccine-related decisions through genetically based prioritization. Participants supported vaccinomics’ potential for increased personalization. Some participants favored prioritizing others over themselves during a vaccine shortage, while others did not. Some participants worried health insurance companies would discriminate against them based on information discovered through vaccinomics. Participants feared inequitable implementation of vaccinomics would contribute to discrimination and marginalization of vulnerable populations. Discussing vaccinomics did not impact perceptions of vaccine safety and effectiveness. Federal funding for vaccinomics was broadly supported. Conclusion: Participants supported vaccinomics’ potential for increased personalization, noting policy safeguards to facilitate equitable implementation and protect privacy were needed. Despite some concerns, participants hoped vaccinomics would improve vaccine safety and effectiveness. Policies regarding vaccinomics’ implementation must address public concerns about the privacy and confidentiality of genetic information and potential inequities in access to vaccinomics’ benefits.

Prenatal ultrasound use is skyrocketing despite limited evidence of improved outcomes. One factor driving this trend is the widely recognized psychological appeal of real-time fetal imaging. Meanwhile, considering imperfect safety evidence, U.S. professional guidelines dictate that prenatal ultrasound—a screening test—should be governed by expected clinical benefits—an opportunity for intervention. However, when women’s healthcare professionals themselves are pregnant, their access to ultrasound technology permits informal, personal use that may deviate from standard-of-care, e.g., for reassurance. Highlighting a poignant case wherein a pregnant obstetrician’s personal ultrasound use had unforeseen negative consequences, we explore this issue within context of professional ethics and informal medical care. We discuss how women’s health professionals’ self-care may influence and inform prenatal care at large. We advocate curtailing informal prenatal ultrasound use, but also potentially broadening accepted indications for or relaxing proscriptions against ultrasounds for patients. Further research and updated, evidence-based, ethically-sound guidelines are needed.

PURPOSE Tolerance for ambiguity (TFA) is important for physicians, with implications for ethical behavior and patient care. This study explores how medical students' TFA changes from matriculation to graduation and how change in empathy and openness to diversity are associated with this change. METHOD Data for students who took the Matriculating Student Questionnaire (MSQ) in 2013 or 2014 and the Medical School Graduation Questionnaire (GQ) in 2017 or 2018 were drawn from the Association of American Medical Colleges (n = 17,221). Both the MSQ and GQ included a validated TFA scale and a shortened version of the Interpersonal Reactivity Index; the MSQ also included an openness to diversity scale. Tercile groups were used to assess how TFA changed from the MSQ to GQ, and regression analyses were used to assess associations between change in TFA and openness to diversity and between change in TFA and change in empathy. RESULTS Mean TFA scores decreased (d = -.67) among students with the highest TFA at matriculation but increased (d = .60) among students with the lowest TFA at matriculation. Regression results showed that change in TFA was significantly and positively associated with change in empathy (beta = .05, P < .001) and that openness to diversity (as reported at matriculation) was significantly and positively associated with TFA at graduation (beta = .05, P < .001). CONCLUSIONS This is the first nationally representative study to suggest that medical students' TFA changes over time, but in different directions depending on TFA at matriculation. TFA over time was also associated with change in empathy and openness to diversity. Medical schools should consider strategies to assess TFA in their admissions processes and for cultivating TFA throughout the learning process.

Background Pragmatic clinical trials (PCTs) are increasingly being conducted to efficiently generate evidence to inform healthcare decision-making. Despite their growing acceptance, PCTs may involve a variety of ethical issues, including the management of pragmatic clinical trial-collateral findings (PCT-CFs), that is, information that emerges in PCTs that is unrelated to the primary research questions but may have implications for patients, clinicians, and health systems. Objective We sought to understand patients' views about PCT-CF disclosure, including how, by whom, and the nature and extent of information provided. Design Prospective, qualitative focus group study. Participants Focus groups were conducted in Baltimore, MD; Houston, TX; and Seattle, WA (overall N = 66), during July and August 2019. Approach All groups discussed a hypothetical scenario involving the detection of a PCT-CF of contraindicated medications. Participants were asked about their reactions to the PCT-CF and issues related to its disclosure. Key results Reactions to learning about the PCT-CF were mixed, ranging from fear of a significant health problem, anger that the contraindicated medications had gone unnoticed and/or for being included in research without their permission, to gratitude for the information. Preferences for how such disclosures are made varied but were driven by several consistent desires, namely minimizing patient harm and anxiety and demonstrating trust and respect. Many wanted their treating clinician to be informed of the PCT-CF so that they would be prepared to answer patients' questions and to discuss treatment options. Conclusions The detection of PCT-CFs is likely to increase with further expansion of PCTs. As such, clinicians will undoubtedly become involved in the management of PCT-CFs. Our data illustrate some of the challenges clinicians may face when their patients are informed of a PCT-CF and the need to develop guidance for disclosing PCT-CFs in ways that align with patients' preferences and values.

Experiences of wonder should be valued, protected, and promoted in academic settings. Identification of learning environments and interventions that cultivate students’ capacity for wonder (CfW) first requires a means to measure it. We used a mixed-methods approach to develop and validate a measure of CfW. In the qualitative component (Studies 1–3), we content analyzed open-ended descriptions of wonder (Study 1), interviewed people whom others identified as exemplifying CfW (Study 2), and conducted focus groups to review, for quality and consistency, and to establish face validity of, potential inventory items that capture wonder (Study 3). These items were then subjected to standard psychometric analyses in the quantitative component of our methods (Studies 4–6). In Study 4, exploratory factor analysis (EFA) revealed CfW may contain two subscales representing “Perspective Shifting” and “Emotional Reawakening.” In Study 5, confirmatory factor analysis (CFA) corroborated this two-factor structure in an independent sample and longitudinally across 17 months, establishing a final 10-item CfW scale; In Study 6, we assessed the scale’s discriminant and convergent validity. CfW was weakly to moderately correlated with theoretically related constructs of curiosity, tolerance for ambiguity, humility, and empathy. We conclude with a discussion of future directions and potential applications.

There is growing evidence that human genetics plays a significant role in shaping human responses to infectious diseases. For instance, individuals' genetic susceptibility or resistance to infectious disease is likely to affect disease transmission. Yet little attention has been paid to the ethical, legal, and social implications of research in genomics and infectious disease, despite the unique ethical issues that arise in this arena. This article presents results from a pilot study exploring ethics in research on human genetics and response to HIV and other infectious diseases and is focused on perspectives from expert stakeholders. Whereas chairs of institutional review boards, biobank directors, and researchers in genomics and infectious disease expressed similar views about research privacy in the context of a public health emergency, they expressed different perspectives about the role that public health considerations ought to play in the return of individual results to research participants. These perspectives highlight the need to emphasize the importance of broad dialogue for helping various parties navigate the ethically complex current and future challenges of genomics and infectious disease research.

Context Pragmatic clinical trials (PCTs), which are becoming widespread since they are relatively inexpensive and offer important benefits for healthcare decision‐making, can also present practical, ethical, and legal challenges. One such challenge involves managing “pragmatic clinical trial collateral findings” (PCT‐CFs), or information emerging in a PCT that is unrelated to the primary research question(s), yet may have implications for individual patients, clinicians, or health care systems from whom or within which data were collected. The expansion of PCTs makes it likely healthcare systems will increasingly encounter PCT‐CFs, yet little guidance exists regarding their appropriate management. Methods We conducted semi‐structured interviews with key stakeholders experienced in the conduct or oversight of PCTs and those in health system leadership. Interviews explored respondents' experience with PCTs and PCT‐CFs, and actual or hypothetical reactions to PCT‐CF management. We used standard methods of qualitative analysis to identify key themes. Findings Forty‐one stakeholders participated. Four key themes emerged. First, discussions of PCT‐CFs are complicated by layers of ambiguity related to both the nature of PCTs themselves, and unanticipated results that emanate from them. Second, management of PCT‐CFs is context‐specific, and not amenable to a “one‐size‐fits‐all” approach. Third, there was a wide diversity of attitudes regarding the scope of researcher responsibilities in PCTs. Fourth, PCT‐CFs had generally not been previously considered by respondents, but there was widespread belief in the importance of prospective planning to anticipate such issues in future PCTs. Conclusions PCT‐CFs are likely to increase, yet those charged with PCT‐CF decision‐making and their disclosure are unlikely to have experience with these issues. Further deliberation about the ethical obligations and implementation processes regarding PCT‐CFs is needed. To enhance the likelihood of developing sound policies and practices, such deliberations should include the input and perspectives of key stakeholders in PCTs, including professionals, policy makers, and patients.

Rising prices for new, transformative therapies are challenging health systems around the world, leading many payers and providers to begin rationing access to treatments, even in the countries that have been most resistant to doing so. This is the case for direct-acting antivirals (DAAs) for the treatment of hepatitis C virus (HCV). However, little attention has been paid to the increasing role that human genetics might play in rationing decisions. Researchers have already proposed that genetic markers associated with spontaneous HCV clearance could be used to restrict DAA access for some patients, although treatment would be medically beneficial for those patients. Would such forms of rationing present a form of genetic discrimination? And what of the public health implications of these approaches? Here we present an ethical analysis of such proposals for “precision rationing” and raise 4 key areas of concern. We argue that ethical issues arising in this area are not substantively different from the pressing ethical issues regarding rationing and discrimination more broadly, but provide important impetus for motivating broad public debate to find ethically sound ways of managing genomics and new expensive medications.

Background Little is known about how complementary and alternative medicine (CAM) is discussed in cancer care across varied settings in the U.S. Methods In two practices affiliated with one academic medical center in southern California (SoCal), and one in the upper Midwest (UM), we audio-recorded patient-clinician interactions in medical oncology outpatient practices. We counted the frequency and duration of CAM-related conversations. We coded recordings using the Roter Interaction Analysis System. We used chi-square tests for bivariate analysis of categorical variables and generalized linear models for continuous variables to examine associations between dialogue characteristics, practice setting, and population characteristics with the occurrence of CAM discussion in each setting followed by multivariate models adjusting for clinician clustering. Results Sixty-one clinicians and 529 patients participated. Sixty-two of 529 (12%) interactions included CAM discussions, with significantly more observed in the SoCal university practice than in the other settings. Visits that included CAM were on average 6 minutes longer, with CAM content lasting an average of 78 seconds. In bivariate tests of association, conversations containing CAM included more psychosocial statements from both clinicians and patients, higher patient-centeredness, more positive patient and clinician affect, and greater patient engagement. In a multivariable model including significant bivariate terms, conversations containing CAM were independently associated with higher patient-centeredness, slightly longer visits, and being at the SoCal university site. Conclusion The frequency of CAM-related discussion in oncology varied substantially across sites. Visits that included CAM discussion were longer and more patient centered. Implications for Practice The Institute of Medicine and the American Society of Clinical Oncology have called for more open discussions of complementary and alternative medicine (CAM). But little is known about the role population characteristics and care contexts may play in the frequency and nature of those discussions. The present data characterizing actual conversations in practice complements a much larger literature based on patient and clinician self-report about CAM disclosure and use. It was found that CAM discussions in academic oncology visits varied significantly by practice context, that the majority were initiated by the patient, and that they may occur more when visit time exists for lifestyle, self-care, and psychosocial concerns.

Objective: We characterize public values regarding vaccinomics, which aims to improve vaccine safety and effectiveness using genomics. Methods: Panel survey (2020) of ≥18-year-olds with embedded animation introduced vaccinomics. Sociodemographic, health, and vaccination-related items were adapted from validated scales. Novel items measured trust in public health authorities, vaccinomics-related values, and preferences for federal funding: vaccinomics compared with vaccine issues and chronic diseases. Beginning and end of survey confidence in vaccine safety was measured to assess potential changes. Data were weighted to the U.S. Census. Vaccinomics-related concerns were stratified by sociodemographic characteristics, vaccine hesitancy status (composite outcome), reported serious vaccine reactions, and trust in public health authorities (PHA). Log binomial regression models estimated associations between these variables and agency to make vaccine-related decisions. Results: Most (70.7%, N = 1,925) respondents expected vaccinomics would increase their vaccine confidence compared to now. Agreement was highest among those without serious vaccine reaction experience (unexperienced: 74.2% versus experienced: 62.3%), with high trust in PHA (high: 83.3% versus low: 57.4%), and low vaccine hesitancy among parents of teenagers (low: 78.8% versus high: 62.5%) and adults without minor children (low: 79.8% versus high: 60.6%; all p

Racial disparities in both obstetrics and COVID-19 are well documented. Troublingly, implicit biases and related testimonial injustice potentiate adverse outcomes for women of color whose voices and concerns have been historically discredited by the medical establishment. In the context of COVID-19, the restriction of hospital visitors for infection prevention and control in a labor and delivery setting may disproportionately burden black women by eliminating or severely limiting access to essential in-person advocacy, which threatens to exacerbate existing disparities in maternal and neonatal outcomes. The potential disproportionate impact of visitor restrictions on women of color should inform the ongoing pandemic response.

The pandemic of SARS-CoV-2 has led to unprecedented changes to society, causing unique problems that call for extraordinary solutions. We consider one such extraordinary proposal: ‘safer infection sites’ that would offer individuals the opportunity to be intentionally infected with SARS-CoV-2, isolate, and receive medical care until they are no longer infectious. Safer infection could have value for various groups of workers and students. Health professionals place themselves at risk of infection daily and extend this risk to their family members and community. Similarly, other essential workers who face workplace exposure must continue their work, even if have high-risk household members and live in fear of infecting. When schools are kept closed because of the fear that they will be sites of significant transmission, children and their families are harmed in multiple ways and college students who are living on campus, whether or not they are attending classes in person, are contributing to high rates of transmission and experiencing high rates of exposure. We consider whether offering safer infection sites to these groups could be ethically defensible and identify the empirical unknowns that would need to resolve before reaching definitive conclusions. This article is not an endorsement of intentional infection with the coronavirus, but rather is meant to spark conversation on the ethics of out-of-the-box proposals. Perhaps most meaningfully, our paper explores the value of control and peace of mind for those among us most impacted by the pandemic: those essential workers risking the most to keep us safe.

Purpose: As many as 20% of oncology patients receive chemotherapy in the last 14 days of their lives. This study characterized conversations between patients and cancer clinicians on chemotherapy cessation in the setting of advanced cancer. Methods: This 3-site study captured real-time, audio-recorded interviews between oncology clinicians and patients with cancer during actual clinic visits. Audio-recordings were reviewed for discussion of chemotherapy cessation and were analyzed qualitatively. Results: Among 525 recordings, 14 focused on stopping chemotherapy; 14 patients participated with 11 different clinicians. Two types of nonmutually exclusive conversation elements emerged: direct and specific elements that described an absence of effective therapeutic options and indirect elements. An example of a direct element is as follows: “…You know this is…always really tough…But I—I think that you may need more help…I think we’re close to stopping chemotherapy…And hospice is really helpful to have in place…” In contrast, the second conversation element was more convoluted: “…transplant is not an option and surgery is not an option…The options…are taking a pill…It doesn’t shrink the tumor…It may help you live a little longer. But I’m worried if [you] had the pill, it’s still a therapy and it still has side effects. I [am] worried if I give it to you now, that you’re so weak, it will make you worse.” No relationship seemed apparent between conversation elements and chemotherapy cessation. Conclusions: Conversations on chemotherapy cessation are complex; multiple factors appear to drive the decision to stop.

Background The protection that an influenza vaccine offers can vary significantly from person to person due to differences in immune systems, body types, and other factors. The question, then, is what is the value of efforts to reduce this variability such as making vaccines more personalized and tailored to individuals. Methods We developed a compartment model of the United States to simulate different influenza seasons and the impact of reducing the variability in responses to the influenza vaccine across the population. Results Going from a vaccine that varied in efficacy (0–30%) to one that had a uniform 30% efficacy for everyone averted 16.0–31.2 million cases, $1.9–$3.6 billion in direct medical costs, and $16.1–$42.7 billion in productivity losses. Going from 0–50% in efficacy to just 50% for everyone averted 27.7–38.6 million cases, $3.3–$4.6 billion in direct medical costs, and $28.8–$57.4 billion in productivity losses. Going from 0–70% to 70% averted 33.6–54.1 million cases, $4.0–$6.5 billion in direct medical costs, and $44.8–$64.7 billion in productivity losses. Conclusions This study quantifies for policy makers, funders, and vaccine developers and manufacturers the potential impact of efforts to reduce variability in the protection that influenza vaccines offer (eg, developing vaccines that are more personalized to different individual factors).

Background Most health care organizations' efforts to reduce harm focus on physical harm, but other forms of harm are both prevalent and important. These "nonphysical" harms can be framed using the concepts of respect and dignity: Disrespect is an affront to dignity and can cause harm. Organizations should strive to eliminate disrespect to patients, to families, and among health care professionals. Methods A diverse, interdisciplinary panel of experts was convened to discuss strategies to guide health care systems to embrace an expanded definition of patient harm that includes nonphysical harm. Subsequently, using a modified Delphi process, a guide was developed for health care professionals and organizations to improve the practice of respect across the continuum of care. Results Five rounds of surveys were required to reach predefined metrics of consensus. Delphi participants identified a total of 25 strategies associated with six high-level recommendations: "Leaders must champion a culture of respect and dignity"; with other professionals sharing the responsibility to "Promote accountability"; "Engage and support the health care workforce"; "Partner with patients and families"; "Establish systems to learn about and improve the practice of respect"; and "Expand the research agenda and measurement tools, and disseminate what is learned." Conclusion Harm from disrespect is the next frontier in preventable harm. This consensus statement provides a road map for health care organizations and professionals interested in engaging in a reliable practice of respect. Further work is needed to develop the specific tactics that will lead health care organizations to prevent harm from disrespect.

Purpose To validate a brief index of patient and family experiences of respect in the intensive care unit. Material and methods A survey including the 10-item ICU-RESPECT scale was administered to patients and family members in one ICU at a large west coast academic medical center. Confirmatory psychometric analyses were conducted. Results Based on 142 completed surveys, factor analysis confirmed a unidimensional scale with an alpha of 0.90, an Eigen value of 4.9, and factor loadings from 0.50 to 0.86. The mean total score was 7.59 (SD = 3.06) out of a maximum of 10. Among the 106 surveys that included demographics, overall scores did not differ by type of respondent (patient or family) or by gender. There were modest differences in overall scores by patient race. Two individual items differed by type of respondent. Conclusions The ICU-RESPECT index demonstrates reliability and concurrent validity in a different ICU setting from the one where the index was developed. Future research should assess the scale's predictive validity, and factors associated with variation in scores. As hospitals address patient experience more broadly in response to national metrics, the index could identify particular behaviors or ICUs that would benefit from interventions to enhance respectful treatment.

The learning environment of premedical education on many American undergraduate campuses appears to be relentlessly competitive, potentially undermining virtues of moral character critical to success in medical school and to eventual clinical excellence. We propose a new line of inquiry exploring the “capacity for wonder,” the propensity to encounter everyday experiences with a sense of radical appreciation, as a personal disposition that, if cultivated in the premedical learning environment, may support the development of six specific virtues among future medical students: courage, curiosity, humility, gratitude, respect, and compassion.

While the embedded nature of pragmatic clinical trials (PCTs) can improve the efficiency and relevance of research for multiple stakeholders, embedding research into ongoing clinical care can also involve ethical and regulatory challenges. An emergent challenge is the management of pragmatic clinical trial collateral findings (PCT-CFs). While PCT-CFs share some features with incidental or secondary findings that are encountered in conventional clinical trials and clinical care, the PCT context differs in ethically relevant ways that complicate PCT-CF identification and management. We report on the results of a two-year multi-method investigation of PCT-CFs. Overall, five core themes emerged: 1) the liminal nature of PCTs and the implications of this for PCT-CFs; 2) the context-specific nature of PCT-CF management; 3) the centrality of institutions; 4) the importance of prospective planning; and 5) patient expectations. Among the central lessons of this work are that prior ethics guidance from other settings cannot easily be adapted to address PCT-CFs, nor can a single approach readily accommodate all PCT-CFs. Moving forward, stakeholders, including researchers, institutions, ethics oversight bodies, and funders, should anticipate and plan for PCT-CFs in the design, conduct, and analysis of PCTs. Future scholarship is needed to examine experiences with PCT-CFs, and the practical and conceptual issues they raise for the future conduct of PCTs.

There is a rich tradition in bioethics of gathering empirical data to inform, supplement, or test the implications of normative ethical analysis. To this end, bioethicists have drawn on diverse methods, including qualitative interviews, focus groups, ethnographic studies, and opinion surveys to advance understanding of key issues in bioethics. In so doing, they have developed strong ties with neighboring disciplines such as anthropology, history, law, and sociology. Collectively, these lines of research have flourished in the broader field of “empirical bioethics” for more than 30 years (Sugarman & Sulmasy 2010). More recently, philosophers from outside the field of bioethics have similarly employed empirical methods—drawn primarily from psychology, the cognitive sciences, economics, and related disciplines—to advance theoretical debates. This approach, which has come to be called experimental philosophy (or x-phi), relies primarily on controlled experiments to interrogate the concepts, intuitions, reasoning, implicit mental processes, and empirical assumptions about the mind that play a role in traditional philosophical arguments (Knobe et al. 2012). Within the moral domain, for example, experimental philosophy has begun to contribute to long-standing debates about the nature of moral judgment and reasoning; the sources of our moral emotions and biases; the qualities of a good person or a good life; and the psychological basis of moral theory itself (Alfano, Loeb, & Plakias 2018). We believe that experimental philosophical bioethics—or “bioxphi”—can similarly explain how it is distinct from empirical bioethics more broadly construed, and attempt to characterize how it might advance theory and practice in this area.

Pragmatic clinical trials (PCTs) offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question(s), yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as ?pragmatic clinical trial collateral findings,? or ?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice.

Background The Scholarly Concentrations program was established at Johns Hopkins University School of Medicine in 2009 with the aim of instilling passion for scholarship. Objective Our study aimed to determine whether the Scholarly Concentrations program achieves positive changes in medical student self-efficacy in conducting research and, if so, whether this results in future career aspirations toward scholarship. Design We used the Clinical Research Appraisal Inventory-Short Form (CRAI-SF) to assess changes in self-efficacy among students completing the Scholarly Concentrations program between 2014 and 2017. We calculated composite mean scores of six domains. We included outcomes on whether students published a manuscript, overall program perceptions, and likelihood of future research careers. We analyzed relationships between CRAI-SF scores and outcomes using paired t-tests and multivariable-adjusted logistic regression. Results A total of 419 students completed the Scholarly Concentrations program. All 6 CRAI domain scores showed significant improvements in self-efficacy between the pre-Scholarly Concentrations and post-Scholarly Concentrations ratings (range of changes 0.76–1.39, p

Summary Background Research in genetics and infectious diseases (ID) presents novel configurations of ethical, legal, and social issues (ELSIs) related to the intersection of genetics with public health regulations and the control of transmissible diseases. Such research includes work both in pathogen genetics and on the ways that human genetics affect responses to ID. This paper identifies and systematizes the unique issues at this intersection, based on an interdisciplinary expert review. Methodology This paper presents results of a formal issue-spotting exercise among twenty experts in public health, law and genomics, biobanking, genetic epidemiology , ID medicine and public health, philosophy, ethics and ID, ethics and genomics, and law and ID. The focus of the exercise was on the collection, storage, and sharing of genetic information relating to ID. Results The issue-spotting exercise highlighted the following ELSIs: risks in reporting to government authorities, return of individual research results, and resource allocation – each taking on specific configurations based on the balance between public health and individual privacy/protection. Conclusions The public health implications of interactions between genomics and ID frame considerations for equity and justice. In the context of the COVID-19 pandemic, these issues are especially pressing.

Purpose The purpose of the study is to develop a brief index of patient and family experiences of respect in the intensive care unit (ICU). Materials and methods We designed a questionnaire with 44 items representing 12 themes that emerged from prior in-depth interviews with ICU patients and families. After pilot testing, items with minimal variability were eliminated. The resulting 21-item questionnaire was administered to patients and families in 5 adult ICUs. Psychometric analyses were conducted. Results Fifty-seven questionnaires were completed. Factor analysis resulted in a unidimensional scale consisting of 10 items with an α of .85 and an Eigen value of 11.3. Factor loadings ranged from 0.54 to 0.84, and item-test correlations ranged from 0.47 to 0.71. The mean total score was 7.25 out of a maximum of 10. Scores were lower for surgical than medical or disease-specific ICUs. Conclusions The “ICU-RESPECT” index demonstrates high reliability and concurrent validity in ICU patients and families. Future research should validate this index in other ICU settings, assess its predictive validity, and evaluate different methods for maximizing response rate. As hospitals address patient experience more broadly in response to national metrics, the index could identify particular behaviors or ICUs that would benefit from interventions to enhance respectful treatment.

Cancer patients use complementary and alternative medicine (CAM), but do not routinely talk about it with their clinicians. This study describes CAM discussions in oncology visits, the communication patterns that facilitate these discussions and their association with visit satisfaction.327 patients (58% female; average age 61) and 37 clinicians were recorded during an oncology visit and completed post-visit questionnaires. All CAM discussions were tagged and the Roter Interaction Analysis System (RIAS) was used to code visit dialogue.CAM was discussed in 36 of 327 visits; discussions were brief (one minute), the majority patient initiated (65%) and more common for patients in early stages of cancer care. Longer visits (35 vs 29min; p0.05), greater patient engagement in visit dialogue, lowered clinician verbal dominance and a more patient-centered pattern of visit communication were significantly related to visits with CAM discussions (all p values0.01). Both patient and clinician visit satisfaction was higher with CAM discussion (p0.05).CAM discussions do not occur at random; they take place in visits characterized by patient-centered communication and are associated with higher visit satisfaction.CAM discussions are perceived positively by both patients and clinicians and are facilitated by patient-centered visit communication.

Background Although strong relationships between primary care providers (PCPs) and patients with addictive disease are essential for care, these relationships are often strained. Providers frequently have negative attitudes about treating these patients, in part due to the practical and psychosocial challenges that come with addictive disease. Resulting hostility frequently causes avoidance of primary care by patients with potentially increased morbidity. However, gaining knowledge of patient perspectives on these relationships could improve physician attitudes toward patients with addictive disease and relatedly improve care. Methods The authors conducted 18 semistructured interviews of patients with current or prior debilitating addictive disease recruited from a primary care practice in East Baltimore. Interview transcripts were analyzed using editing analysis to reveal major themes. Results Participants elucidated several provider characteristics that were essential for successful relationships. Providers needed to be knowledgeable about addiction, feel responsible for treating these patients, emphasize overall health, and engage patients in their own care. Additionally, participants strongly desired providers who treated them as “people” that they cared about. Interestingly, interviewees also frequently cited patient characteristics that could affect the strength of patient-provider relationships. These included being concerned about their health, feeling deserving of care, and having appropriate psychiatric care for concomitant mental health conditions. Practical obstacles and a disorganized mindset impeded patient-provider relationships. Conclusions The interpersonal dynamics of the patient-provider relationship are particularly important for patients with addictive disease, as this relationship may be one of the most stable and rewarding in their lives. Patients felt that greater understanding of the practical and psychosocial challenges of addiction enabled providers to more effectively address their health concerns and to be more caring and less judgmental. It is hoped that this work will contribute to providers’ understanding of patients with addictions, thus allowing them to form stronger relationships and ultimately provide better care.

This commentary takes a look back at views on complementary and alternative medicine and reflects on how those views have evolved, advocating for a conversation around complementary and alternative medicine in cancer care that is more nuanced, patient-centered, and respectful to best meet the needs of patients in the coming decades.

This chapter outlines the ethical issues raised by the use of genomics in the study of infectious disease, in research and development of preventive and therapeutic measures, and to inform public health interventions and policies. More than two decades of ethical, legal, and social implications (ELSI) research on the application of genomics to complex diseases have produced many insights that are also relevant to infectious diseases; however, a number of factors unique to infectious diseases underscore the importance of identifying novel ELSI issues that might emerge from the application of genomics in this context, including issues surrounding personalized medicine and public health. While the science of genomics in the context of infectious disease is still in its infancy, and it is too early to identify all of the potential ELSI issues that may emerge from it, policy recommendations for public health strategies to prevent and control infectious disease must attend to such concerns.

Negative bias toward patients with obesity is an ethical challenge in patient care. Several interventions to mitigate medical students' negative weight bias have been tried but none with an explicit focus on ethics. Here we describe first-year medical students' attitudes toward obesity and our effort to improve their attitudes through an innovative ethics session embedded within the required course, "Obesity, Nutrition, and Behavior Change," at Johns Hopkins University School of Medicine.Precourse survey data were collected from 6 first-year cohorts (2012-2017). Before the ethics session, students take the Implicit Association Test (IAT) to measure implicit weight bias. During the session, students discuss their classmates' personal struggles with weight, beliefs about causes of obesity, and the IAT results. They also watch and discuss video clips from the TV showAll students responded to the precourse survey. Across cohorts, IAT results revealed that 70% of students held a thin preference, 18% were neutral and 12% held a fat preference. Forty-seven percent had personally struggled with weight loss. While most students thought obesity is a disease (89%) or behavioral (88%), 74% thought it results from ignorance, and 28% thought people with obesity are lazy. Among the 59 respondents to the follow-up survey, 30% reported improvement in their attitudes after the session. Over 40% thought it was useful to discuss students' personal struggles with weight and the IAT and survey results, and over 70% thought theMedical students have negative attitudes about obesity that are consistent over time. Providing opportunities for students to discuss their personal experiences and beliefs about obesity within an ethics framework and using popular media as a basis for discussion might improve their attitudes toward obesity.

Objective: In this article, the authors characterize the different ways patients and clinicians discuss complementary and alternative medicine (CAM) during routine cancer care. Methods: Over a period of two years, the authors audio-recorded clinical interactions between 37 medical oncology clinicians and a sample of 327 oncology patients at an academic cancer center in the Midwest United States. Recordings of conversations that included any discussion of CAM were transcribed and analyzed using a qualitative content analysis approach. Results: Out of 327 conversations, CAM was mentioned and/or discussed in only 31 encounters. Communication dynamics between clinician and patient involve several factors: the condition of the patient and his or her knowledge about and experience with CAM, the clinician's knowledge and values about CAM, perceived assumptions and stereotypes about CAM, and institutional response to the integration of CAM in cancer care. Conclusion: Addressing the difficult and sensitive topic of CAM in cancer care requires hearing patients in a manner meaningful to them. In that sense, CAM can serve as an important marker and test case in the march toward shared decision-making and patient-centered communication generally.

Phylogenetic analysis of pathogens is an increasingly powerful way to reduce the spread of epidemics, including HIV. As a result, phylogenetic approaches are becoming embedded in public health and research programmes, as well as outbreak responses, presenting unique ethical, legal, and social issues that are not adequately addressed by existing bioethics literature. We formed a multidisciplinary working group to explore the ethical issues arising from the design of, conduct in, and use of results from HIV phylogenetic studies, and to propose recommendations to minimise the associated risks to both individuals and groups. We identified eight key ethical domains, within which we highlighted factors that make HIV phylogenetic research unique. In this Review, we endeavoured to provide a framework to assist researchers, public health practitioners, and funding institutions to ensure that HIV phylogenetic studies are designed, done, and disseminated in an ethical manner. Our conclusions also have broader relevance for pathogen phylogenetics. ispartof: LANCET HIV vol:5 issue:11 pages:E656-E666 ispartof: location:Netherlands status: published