Research opportunities and ethical considerations for heart and lung xenotransplantation research: A report from the National Heart, Lung, and Blood Institute workshop.

Xenotransplantation offers the potential to meet the critical need for heart and lung transplantation presently constrained by the current human donor organ supply. Much was learned over the past decades regarding gene editing to prevent the immune activation and inflammation that cause early organ injury, and strategies for maintenance of immunosuppression to promote longer-term xenograft survival. However, many scientific questions remain regarding further requirements for genetic modification of donor organs, appropriate contexts for xenotransplantation research (including nonhuman primates, recently deceased humans, and living human recipients), and risk of xenozoonotic disease transmission.

Update on the ethical, legal and technical challenges of translating xenotransplantation.

This manuscript reports on a landmark symposium on the ethical, legal and technical challenges of xenotransplantation in the UK. King's College London, with endorsement from the British Transplantation Society (BTS), and the European Society of Organ Transplantation (ESOT), brought together a group of experts in xenotransplantation science, ethics and law to discuss the ethical, regulatory and technical challenges surrounding translating xenotransplantation into the clinical setting. The symposium was the first of its kind in the UK for 20 years.

Has the Expansion of Health Insurance Coverage via the Implementation of the Affordable Care Act Influenced Inequities in Coronary Revascularization in New York City?

Background/purpose: In 2014, New York City implemented the Affordable Care Act (ACA) leading to insurance coverage gains intended to reduce inequities in healthcare services use. The paper documents inequalities in coronary revascularization procedures (percutaneous coronary intervention and coronary artery bypass grafting) usage by race/ethnicity, gender, insurance type, and income before and after the implementation of the ACA.

Methods: We used data from the Healthcare Cost and Utilization Project to identify NYC patients hospitalized with the diagnosis of coronary artery disease (CAD) and/or congestive heart failure (CHF) in 2011-2013 (pre-ACA) and 2014-2017 (post-ACA).

Understanding the Underlying Causes of Tensions That Arise in ICU Care for Older Patients.

Abstract: We hypothesized that the reasons behind this tension are complex and can be understood better by applying social psychology theory.: A qualitative methodology was drawn on for data collection and thematic analysis, with focus group discussions adopted for interviews with patient families and ICU physicians. Additionally, we used a social psychology theory, the reasoned action approach (RAA) framework, to understand these tensions.

Access to outpatient care in Manhattan and Paris: A tale of real change in two world cities.

France's system of universal health insurance (UHI) offers more equitable access to outpatient care than the patchwork system in the U.S., which does not have a UHI system.

Xenotransplantation Clinical Trials and the Need for Community Engagement.

There are several ethical concerns facing first-in-human clinical trials involving xenotransplantation. Who should participate in these trials? If we limit trial participation to those who have exhausted other treatment options, how can we avoid therapeutic misconception? How should we balance the desire for long-term monitoring of trial participants against the well-established principle that research participants have the right to withdraw from research? Finally, how should we balance concerns about equitable access to these trials with deep mistrust of the scientific community? In particular, should xenotransplant clinical trials attempt to address well-known inequities in clinical trial participation by race and ethnicity? In this commentary, I argue that clinical investigators and regulators have an obligation to engage with underrepresented communities to develop answers to these questions.

The Role of Formal Policy to Promote Informed Consent of Psychotropic Medications for Youth in Child Welfare Custody: A National Examination.

Active participation of youth and surrogate decision-makers in providing informed consent and assent for mental health treatment is critical. However, the procedural elements of an informed consent process, particularly for youth in child welfare custody, are not well defined. Given calls for psychotropic medication oversight for youth in child welfare custody, this study proposes a taxonomy for the procedural elements of informed consent policies based upon formal and informal child welfare policies and then examines whether enacted state formal policies across the United States endorsed these elements.

Neighborhood inequalities and the decline of infant mortality in São Paulo.

This paper documents changes in infant mortality (IM) rates in São Paulo, Brazil, between 2003 and 2013 and examines the association among neighborhood characteristics and IM. We investigate the extent to which increased use of health care services and improvements in economic and social conditions are associated with reductions in IM. Using data from the Brazilian Census and the São Paulo Secretaria Municipal da Saúde/SMS, we conducted a longitudinal analysis of panel data in all 96 districts of São Paulo for every year between 2003 and 2013.

The evolution of infant mortality and neighbourhood inequalities in four world cities: 1988-2016.

Objectives: To determine the level of neighbourhood inequalities in infant mortality (IM) rates in the urban core of four world cities and to examine the association between neighbourhood-level income and IM. We compare our findings with those published in 2004 to better understand how these city health systems have evolved.

Methods: We compare IM rates among and within the four cities using data from four periods: 1988-1992; 1993-1997; 2003-2008 and 2012-2016.

Regulating Gene Editing in the Wild: Building Regulatory Capacity to Incorporate Deliberative Democracy.

The release of genetically engineered organisms into the shared environment raises scientific, ethical, and societal issues. Using some form of democratic deliberation to provide the public with a voice on the policies that govern these technologies is important, but there has not been enough attention to how we should connect public deliberation to the existing regulatory process. Drawing on lessons from previous public deliberative efforts by U.

Envisioning Complex Futures: Collective Narratives and Reasoning in Deliberations over Gene Editing in the Wild.

The development of technologies for gene editing in the wild has the potential to generate tremendous benefit, but also raises important concerns. Using some form of public deliberation to inform decisions about the use of these technologies is appealing, but public deliberation about them will tend to fall back on various forms of heuristics to account for limited personal experience with these technologies. Deliberations are likely to involve narrative reasoning-or reasoning embedded within stories.

Public Deliberation about Gene Editing in the Wild.

Genetic editing technologies have long been used to modify domesticated nonhuman animals and plants. Recently, attention and funding have also been directed toward projects for modifying nonhuman organisms in the shared environment-that is, in the "wild." Interest in gene editing nonhuman organisms for wild release is motivated by a variety of goals, and such releases hold the possibility of significant, potentially transformative benefit.

Variation in end-of-life care and hospital palliative care among hospitals and local authorities: A preliminary contribution of big data.

Background: Many studies explore the clinical and ethical dimensions of care at the end-of-life, but fewer use administrative data to examine individual and geographic differences, including the use of palliative care.

Aim: Provide a population-based perspective on end-of-life and hospital palliative care among local authorities and hospitals in France.

Design: Retrospective cohort study of care received by 17,928 decedents 65 and over (last 6 months of life), using the French national health insurance database.

Unsanitized and Unfair: How COVID-19 Bailout Funds Refuel Inequity in the US Health Care System.

Context: The CARES Act of 2020 allocated provider relief funds to hospitals and other providers. We investigate whether these funds were distributed in a way that responded fairly to COVID-19-related medical and financial need. The US health care system is bifurcated into the "haves" and "have nots.

Civic Learning, Science, and Structural Racism.

Vaccine hesitancy is a major public health challenge, and racial disparities in the acceptance of vaccines is a particular concern. In this essay, we draw on interviews with mothers of Black male adolescents to offer insights into the reasons for the low rate of vaccination against the human papillomavirus among this group of adolescents. Based on these conversations, we argue that increasing the acceptance of HPV and other vaccines cannot be accomplished merely by providing people with more facts.

Residential Segregation and Publicly Spirited Democracy.

Successful deliberations over contentious issues require a publicly spirited citizenry that will encourage elected officials to promote what James Madison called the "permanent and aggregate interests" of the country. Unfortunately, atomizing forces have pulled American society apart, undermining trust and making collective action difficult. Residential segregation is one of those atomizing forces.

Recommendations for Better Civic Learning: Building and Rebuilding Democracy.

This is the concluding essay for a special report from The Hastings Center entitled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose, which grew out of a project supported by the John S. and James L. Knight Foundation.

Civic Learning for a Democracy in Crisis.

This essay introduces a special report from The Hastings Center entitled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose, which grew out of a project supported by the John S. and James L. Knight Foundation.