Participatory Practice in Pursuit of Social Justice.

The idea that people should have a voice in decisions that affect them is now widely accepted in the US health sector. Practices such as patient and family advisory boards, community-based participatory research, patient-centered research, and public deliberation are becoming commonplace. The appeal of public participation turns on a number of purported benefits, including the potential for more inclusive and transparent decision-making, equitable interventions and outcomes, and public trust in institutions.

Ethics of Predicting and Preventing Preterm Birth.

Preterm birth (PTB) occurs disproportionately among women who are minoritized and who live and work in poverty. This disadvantage occurs as a result of societal norms and policies that affect how people are treated and determine their access to a broad range of resources. Research that takes social context into account offers the best opportunity for identifying approaches to prevent PTB.

Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.

Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions.

Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.

Purpose: Amid calls for greater diversity in precision medicine research, the perspectives of Indigenous people have been underexplored. Our goals were to understand tribal leaders' views regarding the potential benefits and risks of such research, explore its priority for their communities, and identify the policies and safeguards they consider essential. This article reports on the participants' perspectives regarding governance and policy, stewardship and sharing of information and biospecimens, and informed consent.

Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.

The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 () genetic variants are nonactionable, predominantly found in people of West African ancestry, and contribute to kidney disease disparities. To inform ethical research practice, we interviewed researchers, clinicians, and African American community members (  =  76) about the potential risks and benefits of returning research results.

Using Public Deliberation to Set Priorities: The Case of COVID-19 Vaccine Access in New York City.

Context: The COVID-19 pandemic has resulted in a record number of deaths in the United States and tremendous economic and personal strain. During 2020, in anticipation of a vaccine to slow the spread of disease, local and state governments in the United States developed plans for vaccine prioritization, given a limited initial supply. Recognizing the challenges inherent in prioritization, the New York City (NYC) health department sought guidance from members of the public about the fairest approach to early-stage vaccine distribution.

Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

Background: This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.

Diagnosis, Education, and Care of Patients with -Associated Nephropathy: A Delphi Consensus and Systematic Review.

Background: variants contribute to the markedly higher incidence of ESKD in Blacks compared with Whites. Genetic testing for these variants in patients with African ancestry who have nephropathy is uncommon, and no specific treatment or management protocol for -associated nephropathy currently exists.

Methods: A multidisciplinary, racially diverse group of 14 experts and patient advocates participated in a Delphi consensus process to establish practical guidance for clinicians caring for patients who may have -associated nephropathy.

White Privilege, White Poverty: Reckoning with Class and Race in America.

This essay argues that a failure to think and talk critically and candidly about White privilege and White poverty is a key threat to the United States of America's precarious democracy. Whiteness frames one of America's most pressing collective challenges-the poor state of the nation's health, which lags behind other wealthy nations and is marred by deep and entrenched class- and race-based inequities. The broadscale remedies experts recommend demand what is in short supply: trust in evidence, experts, government, and one another.

Deliberations About Genomic Research and Biobanks With Citizens of the Chickasaw Nation.

Amid the rapid growth of precision medicine and biobanking initiatives, there have been few efforts at cataloging the implications of these initiatives for Indigenous communities. A consortium involving a university and three American Indian/Alaska Native (AIAN) community partners is working to promote deliberation and dialog in AIAN communities about the potential benefits and risks of genomic research for those communities. The first of the consortium's three planned deliberations was held in September 2018 with citizens of the Chickasaw Nation, a federally recognized tribe in south-central Oklahoma with a full-service medical center and growing research capacity and oversight.

An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.

As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results.

At the Research-Clinical Interface: Returning Individual Genetic Results to Research Participants.

Whether individual results of genetic research studies ought to be disclosed to study participants has been debated in recent decades. Previously, the prevailing expert view discouraged the return of individual research results to participants because of the potential lack of analytic validity, questionable clinical validity and medical actionability, and questions about whether it is the role of research to provide participants with their data. With additional knowledge of participant perspectives and shifting views about the benefits of research and respect for participants, current expert consensus is moving toward support of returning such results.

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.

Persistent, unresolved issues stemming from a legacy of scientific exploitation and bio-colonialism have kept many tribal nations from participating in genomic research. The Center for the Ethics of Indigenous Genomic Research (CEIGR) aims to model meaningful community engagement that moves toward more inclusive and equitable research practices related to genomics. This article reflects on key successes and challenges behind CEIGR's efforts to shape Ethical, Legal and Social Implications (ELSI) research in ways that are informed by Indigenous perspectives, to locate community partnerships at the center of genomics research, and to conduct normative and empirical research with Indigenous communities that is grounded in the concepts of reciprocity, transparency and cultural competency.

The Precautionary Principle for Shift-Work Research and Decision-Making.

Shift work (working outside of 6:00 AM to 6:00 PM) is a fixture of our 24-hour economy, with approximately 18 per cent of workers in the USA engaging in shift work, many overnight. Since shift work has been linked to an increased risk for an array of serious maladies, including cardiometabolic disorders and cancer, and is done disproportionately by the poor and by minorities, shift work is a highly prevalent economic and occupational health disparity. Here we draw primarily on the state of science around shift work and breast cancer to argue that shift work represents a public health threat serious enough to warrant a precautionary stance.

Shrinking Poor White Life Spans: Class, Race, and Health Justice.

An absolute decline in US life expectancy in low education whites has alarmed policy makers and attracted media attention. Depending on which studies are correct, low education white women have lost between 3 and 5 years of lifespan; men, between 6 months and 3 years. Although absolute declines in life expectancy are relatively rare, some commentators see the public alarm as reflecting a racist concern for white lives over black ones.

Ethics Rounds: Death After Pediatric Dental Anesthesia: An Avoidable Tragedy?

Early childhood caries (ECC) is the single most common chronic childhood disease. In the treatment of ECC, children are often given moderate sedation or general anesthesia. An estimated 100 000 to 250 000 pediatric dental sedations are performed annually in the United States.

Clinical Genetic Testing for APOL1: Are we There Yet?

End-stage renal disease (ESRD) disproportionately affects African Americans, who are two to four times more likely than European Americans to develop ESRD. Two independent variants of the apolipoprotein L1 (APOL1) gene, G1 and G2, have been associated with a 7- to 10-fold greater risk of developing nondiabetic ESRD in African Americans. Those who inherit two risk variants (G1/G1, G2/G2, or G1/G2) are also more likely to develop ESRD at a younger age and to have progression of chronic kidney disease.