Duties When an Anonymous Student Health Survey Finds a Hot Spot of Suicidality.

Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that included school-level analysis discovered a school with alarmingly prevalent student suicidality. Given confidentiality protocols typical of surveillance, the surveyors were uncertain whether and how to intervene. We searched literature for duties to warn at-risk groups discovered during public health surveillance, but we found no directly applicable guidance or cases. Reasoning by analogy, we conclude that surveyors should contact the school's leaders to call attention to its outlier status, but public warning is unwarranted. However, such an ad hoc decision to issue a warning, even if only to school leaders, raises significant practical, legal and ethical issues. National public health and education associations should produce guidance that clarifies ethical and legal duties owed to schools and students involved in population health-risk surveillance.

Colorado's New Proxy Law: Moving from Statute to Guidelines.

In 2016, the Colorado legislature passed an amendment to Colorado's medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of advocates responsible for initiating the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado.

Colorado's New Proxy Law Allowing Physicians to Serve as Proxies: Moving from Statute to Guidelines.

In 2016, the Colorado legislature passed an amendment to Colorado's medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of advocates responsible for initiating the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado.

Giving Voice to the Voiceless: The Colorado Response to Unrepresented Patients.

Medical decision making on behalf of unrepresented patients is one of the most challenging ethical issues faced in clinical practice. The legal environment surrounding these patients is equally complex. This article describes the efforts of a small coalition of interested healthcare professionals to address the issue in Colorado. A brief history of the effort is presented, along with discussion of the legal, ethical, practical, and political dimensions that arose in Colorado's effort to address decision making for unrepresented patients through an extension of the existing Colorado Medical Treatment Decision Act (CRS 15-18). A discussion of lessons learned in the process is included.

The ethics of using transgenic non-human primates to study what makes us human.

A flood of comparative genomic data is resulting in the identification of human lineage-specific (HLS) sequences. As apes are our closest evolutionary relatives, transgenic introduction of HLS sequences into these species has the greatest potential to produce 'humanized' phenotypes and also to illuminate the functions of these sequences. We argue that such transgenic apes would also be more likely than other species to experience harm from such research, which renders such studies ethically unacceptable in apes and justifies regulatory barriers between these species and other non-human primates for HLS transgenic research.

Ethics guidelines for research with the recently dead.

The objective of the multidisciplinary expert Consensus Panel on Research with the Recently Dead (CPRRD) was to craft ethics guidelines for research with the recently dead. The CPRRD recommends that research with the recently dead: (i) receive scientific and ethical review and oversight; (ii) involve the community of potential research subjects; (iii) be coordinated with organ procurement organizations; (iv) not conflict with organ donation or required autopsy; (v) use procedures respectful of the dead; (vi) be restricted to one procedure per day; (vii) preferably be authorized by first-person consent, though both general advance research directives and surrogate consent are acceptable; (viii) protect confidentiality; (ix) not impose costs on subjects' estates or next of kin and not involve payment; (x) clearly explain ultimate disposition of the body.

Outcomes of dialysis in neonates with anuric end-stage renal disease at birth: ethical considerations.

INTRODUCTION: We present a case series of neonates with anuric ESRD undergoing renal replacement therapy (RRT) and discuss the associated ethical implications of RRT in this population. METHODS: We reviewed patients who initiated RRT within 1 week of life due to anuric ESRD from 2009-2019 at a single tertiary center. Primary outcomes were receipt of renal transplant (RT), one-year survival, and overall survival. RESULTS: Five patients met the inclusion criteria. Two patients received an RT. One-year survival was 80%, while overall survival was 60% with a median follow-up of 18 months. In the 2 still-living patients who have not undergone RT, they are ineligible, one due to recent malignancy and the other from acquired cardiovascular comorbidities. CONCLUSION: Patients with anuric ESRD requiring RRT undergo multiple treatment challenges with low RT and survival rates. These findings should be shared with families considering intervention for cases of severe renal disease diagnosed prenatally.

Development and application of an ethical framework for pediatric metabolic and bariatric surgery evaluation.

BACKGROUND: As severe obesity continues to rise among youth, metabolic and bariatric surgery (MBS) will increasingly be used as a treatment of choice for durable weight loss and improvement of obesity-related complications. MBS for youth with intellectual and developmental disabilities (IDD) and for preadolescents has raised ethical questions. OBJECTIVES: The purpose of this article is to present the creation and application of an ethical framework that supports why MBS should be considered in pediatrics based on the principle of justice without automatic exclusions. This framework also provides a guide for how to conduct a robust, ethically grounded evaluation of pediatric patients presenting for MBS in general, and among subpopulations including youth with IDD and preadolescents. SETTING: Academic medical center, United States. METHODS: An ethical framework was developed and applied through a collaboration between an MBS center at a children's hospital and the institution's ethics consult service. RESULTS: Application of the ethical framework to address 4 core ethical questions is illustrated using 2 hypothetical cases: 1 that highlights an adolescent with IDD and 1 that highlights a preadolescent. CONCLUSIONS: We have demonstrated the application of a novel, overarching framework to conduct the ethical evaluation of youth presenting for MBS. This framework resulted from a collaboration between MBS and ethics consult teams and has the potential to be used as a prototype for other youth-focused MBS programs. Next steps include prospective data collection to test the framework and determine its validity in the target population.

The role of ethics consultation in decision making for bariatric surgery in pediatrics.

The decision to pursue metabolic and bariatric surgery (MBS) for pediatric patients has become increasingly accepted by patients and their families and by health care professionals. The advancement of pre- and post-operative MBS guidelines, based on accumulating evidence for safety, efficacy, and cost-effectiveness help to map the clinical pathway for MBS consideration. Ethical issues remain possible for each case, however, and consultation with ethical experts can provide clarity in the consideration of MBS. Specifically, ethical issues related to principles of autonomy, justice, beneficence, and non-maleficence may need to be resolved based on patient characteristics, including preadolescent patients and those who present with intellectual disabilities. Institutions that offer MBS for pediatric patients will benefit from collaborating with ethics consultants to develop a structured approach that helps ensure that ethical principles have been adequately addressed for patients presenting for MBS.

Rural Health Care and an Ethics of Familiarity.

This commentary focuses on the narratives written from a variety of voices describing the unique challenges and rewards faced in rural health care. The authors speak from various areas of the country and from many professions including medicine, nursing, social work, and ethics and reflect the experiences of learners, new graduates, and long-time practitioners. The authors also represent people who were raised in rural environments and those who are from more urban settings. The commentary includes a discussion of some major themes from the rural bioethics literature that are reflected in these very personal narratives. The themes include lack of resources; overlapping relationships; resiliency; the need for partnerships and collaboration; and creativity. The commentary will also explore the dichotomy between learners and experienced practitioners and the possible missing voice of practitioners who could not tolerate the challenges and who left rural practice.

Reproductive Health Care in Catholic Facilities: A Scoping Review.

OBJECTIVE: Given the rise in Catholic ownership of U.S. health care facilities, we aimed to examine reproductive health care provision and patient outcomes. We performed a scoping review, which maps the literature and considers inclusion of studies that are not specifically quantitative. DATA SOURCES: We searched five databases (MEDLINE, EMBASE, Web of Science and Cochrane Library, ClinialTrials.gov) from inception through August 2018 using terms related to reproductive health care and religion. METHODS OF STUDY SELECTION: We screened 2,906 studies. Articles were included if in English, included primary research data, and referenced U.S.-based Catholic facilities. We reviewed the reference lists of included articles. We excluded articles that addressed the relationship of patient or health care provider religion to provision of reproductive services, described reproductive health care services in non-Catholic facilities, or reported legal cases or concerns. Two independent reviewers screened all citations, a third reviewer resolved differences, and all three reviewers categorized included citations. TABULATION, INTEGRATION, AND RESULTS: We included 27 studies. Investigators most commonly focused on the provision of emergency contraception (n=9) or other contraceptive and sterilization methods (n=7); few focused on a range of family planning methods (n=3), natural family planning (n=2), ectopic pregnancy management (n=2), abortion care (n=2), miscarriage management (n=1), and infertility care (n=1). The most common study designs were cross-sectional (18/27 [67%]) and qualitative investigations (6/27 [22%]). Common data collection approaches included surveys, interviews, and mystery caller designs. Two studies involved authors with Catholic hospital affiliations and one of these reported patient outcomes; no other patient outcome reports were found. Studies cited restrictions to care in comparison with non-Catholic settings and multisite studies demonstrated variable rates of provision of reproductive health services across Catholic sites. CONCLUSIONS: Despite the significant proportion and recent growth of Catholic health care within the U.S. health care sector, little is known about reproductive health outcomes in these settings and in comparison with other settings.

The new University of Colorado medical school curriculum: a pediatric perspective.

The University of Colorado School of Medicine has developed an innovative 4-year undergraduate curriculum. As a strong advocate for education and curriculum reform, Dr M. Douglas Jones Jr. created an environment for pediatrics to flourish in this new curriculum. Pediatric content has increased in all years of the curriculum, and pediatric faculty have had greater opportunities to teach and seek career development in medical education. In this report, we review the process that led to curriculum reform, provide an overview of the new curriculum design, and highlight examples of the positive impact this process has had on education in pediatrics. We hope that sharing our experience, may benefit others in medical education.

Domains of quality for clinical ethics case consultation: a mixed-method systematic review.

BACKGROUND: "Clinical ethics consultation" (CEC) is the provision of consultative services by an individual or team with the aim of helping health professionals, patients, and their families grapple with difficult ethical issues arising during health care. There are almost 25,000 articles in the worldwide literature on CEC, but very few explicitly address measuring the quality of CEC. Many more address quality implicitly, however. This article describes a rigorous protocol for compiling the diverse literature on CEC, analyzing it with a quality measurement lens, and seeking a set of potential quality domains for CEC based on areas of existing, but hitherto unrecognized, consensus in the literature. METHODS/DESIGN: This mixed-method systematic review will follow a sequential pattern: scoping review, qualitative synthesis, and then a quantitative synthesis. The scoping review will include categorizing all quality measures for CEC discussed in the literature, both quantitative and qualitative. The qualitative synthesis will generate a comprehensive analytic framework for understanding the quality of CEC and is expected to inform the quantitative synthesis, which will be a meta-analysis of studies reporting the effects of CEC on pre-specified clinical outcomes. DISCUSSION: The literature on CEC is broad and diverse and has never been examined with specific regard to quality measurement. We propose a novel mixed-methods approach to compile and synthesize this literature and to derive a framework for assessing quality in CEC. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42015023282.

Gender in bioethics: theory and practice -- an introduction.

Does the care perspective make a difference? Can it reach as far as we would like? It is the goal of this special issue on Gender in Bioethics: Theory and Practice to begin to address some of these important questions. In the first article, Virginia Sharpe provides a comprehensive and thoughtful analysis of how the orientations of justice and care are played out in medical ethical theory. In the second article, James Nelson argues that the more traditional approach in Bioethics to maternal-fetal conflicts is not useful, and that a care perspective is more appropriate. Thoughtful commentary on Nelson's article is provided by Rosemarie Tong. For readers new to the justice-care debate in moral theory, the following articles will provide an informative introduction. For those who are more familiar, it is hoped that you will be challenged by the extension of the debate to the practical issue of maternal-fetal conflicts.