UNASSIGNED: Stroke is one of the leading causes of mortality and disability in the world, with clinical manifestations and severe complications that they negatively affect the patient\'s recovery, contributing to an uncertain prognosis and difficult decisions with bioethical dilemmas such as artificial nutrition in the context of severe stroke.
UNASSIGNED: A 49-year-old patient with a Cerebrovascular Accident in a chronic vegetative state, tracheostomy, and gastrostomy user, admitted for infectious complications, whom, under therapeutic proportionality, the decision is made, shared by medical staff and family, to withdraw artificial nutrition.
UNASSIGNED: Difficult decision-making involves multiple challenges for both the health personnel and the patient and his or her environment. It must be guided by bioethical principles and proportionality in favor of the quality of life and the patient\'s benefit.

In an earlier essay, I advocated that translational bioethics uses the public\'s values, determined through social science, in its analysis of translational science technologies. It may be unclear what those values might be, and whether such a translational ethics would necessarily conclude that cutting edge technologies should not be developed. In this essay, I show the public\'s values relevant to human brain organoids and argue that a translational bioethics analysis using these values would support continued organoid research.

Over the last two decades, the ability to sequence a person\'s genetic code has improved exponentially, while the cost of doing so has plummeted. As genome sequencing is used more widely, diagnoses are being found for people with previously unexplained rare disease, and this has raised hopes that such analysis might usefully be employed to detect and mitigate diseases as early as possible in the life course. However, research with adults by initiatives such as population biobanks should shake our confidence in our ability to make clear health predictions from a genetic code - in many cases, we are learning that the links between genomic variants and disease are far less strong than we once thought. The UK Newborn Genomes Programme aspires to sequence up to 200,000 babies at birth, and analyse their genomic data aiming to identify \'actionable genetic conditions which may affect their health in early years. This aims to ensure timely diagnosis, access to treatment pathways, and enable better outcomes and quality of life for babies and their families\' (Genomics England, 2021). This is a laudable aim, but the path from obtaining genome sequences to enabling better outcomes will not be straightforward and illustrates many of the ethical challenges raised by the use of new genomic technologies. We focus particularly on the challenge of determining \'results\' from the analysis of a genetic code, against a backdrop of promotional public discourses which tend to amplify best case scenarios from genome sequencing while minimising its potential to generate uncertainty.

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In recent years, the global health community has increasingly reported the problem of \'invisibility\': aspects of health and wellbeing, particularly amongst the world\'s most marginalized and impoverished people, that are systematically overlooked and ignored by people and institutions in relative positions of power. It is unclear how to realistically manage global health invisibility within bioethics and other social science disciplines and move forward. In this letter, we reflect on several case studies of invisibility experienced by people in Brazil, Malaysia, West Africa and other transnational contexts. Highlighting the complex nature of invisibility and its interconnectedness with social, political and economic issues and trends, we argue that while local and targeted interventions might provide relief and comfort locally, they will not be able to solve the underlying causes of invisibility. Building from the shared lessons of case study presentations at an Oxford-Johns Hopkins Global Infectious Disease Ethics Collaborative (GLIDE), we argue that in dealing with an intersectional issue such as invisibility, twenty-first century global health bioethics could pursue a more \'disturbing\' framework, challenging the narrow comforting solutions which take as a given the sociomaterial inequalities of the status quo. We highlight that comforting and disturbing bioethical frameworks should not be considered as opposing sides, but as two approaches working in tandem in order to achieve the internationally set global health milestones of providing better health and wellbeing for everyone. Insights from sociology, anthropology, postcolonial studies, history, feminist studies and other styles of critical reasoning have long been disturbing to grand narratives of people and their conditions. To rediscover the ethos of the WHO Alma Ata Declaration-a vision of \"health for all by the year 2000\"-these thinking tools will be necessary aids in developing cooperation and support beyond the narrow market logic that dominates the landscape of contemporary global health.

In 1999, the Bangladesh government introduced the Human Organ Transplantation Act allowing organ transplants from both brain-dead and living-related donors. This Act approved organ donation within family networks, which included immediate family members such as parents, adult children, siblings, uncles, aunts, and spouses. Subsequently, in January 2018, the government amended the 1999 Act to include certain distant relatives, such as grandparents, grandchildren, and first cousins, in the donor lists, addressing the scarcity of donors. Nobody, without these relatives, is legally permitted to donate organs for transplantation in Bangladesh. The focus of this study was to investigate who should donate organs for transplantation in Bangladesh. The ethnographic fieldwork revealed that potential donors are not always available to immediate family members, and even when they are, they might be medically unsuitable for transplants. These considerations influenced the government in the revision of the Act. Secondly, the findings of the study suggest maintaining the current family-based regulations for living organ donation in Bangladesh. Furthermore, the study highlighted a potential consequence: amending the regulation to permit donations to unrelated recipients could significantly amplify the issue of organ selling and buying. While Islam advises Muslims to be compassionate towards all humankind, it also encourages Muslims to prioritize saving the lives of family members. This religious belief limits Muslims from donating organs to family members.

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Introduction: Genomic studies of Legacy African Americans have a tangled and convoluted history in western science. In this review paper, core issues affecting African American genomic studies are addressed and two case studies, the New York African Burial Ground and the Gullah Geechee peoples, are presented to highlight the current status of genomic research among Africa Americans. Methods: To investigate our target population\'s core issues, a metadatabase derived from 22 publicly accessible databases were reviewed, evaluated, and synthesized to identify the core bioethical issues prevalent during the centuries of the African American presence in North America. The sequence of metadatabase development included 5 steps: identification of information, record screening and retention of topic relevant information, identification of eligibility via synthesis for concept identifications, and inclusion of studies used for conceptual summaries and studies used for genetic and genomic summaries. To these data we added our emic perspectives and specific insights from our case studies. Results: Overall, there is a paucity of existing research on underrepresent African American genomic diversity. In every category of genomic testing (i.e., diagnostic, clinical predictive, pharmacogenomic, direct-to-consumer, and tumor testing), African Americans are disproportionately underrepresented compared to European Americans. The first of our case studies is from the New York African Burial Ground Project where genomic studies of grave soil derived aDNA yields insights into the causes of death of 17th and 18th Century African Americans. In the second of our case studies, research among the Gullah Geechee people of the Carolina Lowcountry reveals a connection between genomic studies and health disparities. Discussion: African Americans have historically borne the brunt of the earliest biomedical studies used to generate and refine primitive concepts in genetics. As exploited victims these investigations, African American men, women, and children were subjected to an ethics-free western science. Now that bioethical safeguards have been added, underrepresented and marginalized people who were once the convenient targets of western science, are now excluded from its health-related benefits. Recommendations to enhance the inclusion of African Americans in global genomic databases and clinical trials should include the following: emphasis on the connection of inclusion to advances in precision medicine, emphasis on the relevance of inclusion to fundamental questions in human evolutionary biology, emphasis on the historical relevance of inclusion for Legacy African Americans, emphasis on the ability of inclusion to foster expanded scientific expertise in the target population, ethical engagement with their descendants, and increase the number of science researchers from these communities.

To identify sociodemographic factors associated with pediatric clinical ethics consultation (CEC).
Matched, case-control study at a single center, tertiary pediatric hospital in the Pacific Northwest. Cases (patients hospitalized January 2008-December 2019 with CEC) were compared with controls (those without CEC). We determined the association of the outcome (CEC receipt) with exposures (race/ethnicity, insurance status, and language for care) using univariate and multivariable conditional logistic regression.
Of 209 cases and 836 matched controls, most cases identified as white (42%), had public/no insurance (66%), and were English-speaking (81%); most controls identified as white (53%), had private insurance (54%), and were English-speaking (90%). In univariate analysis, patients identifying as Black (OR: 2.79, 95% CI: 1.57, 4.95; P < .001), Hispanic (OR: 1.92, 95% CI: 1.24, 2.97; P = .003), with public/no insurance (OR: 2.21, 95% CI: 1.58, 3.10; P < .001), and using Spanish language for care (OR: 2.52, 95% CI: 1.47, 4.32; P < .001) had significantly increased odds of CEC, compared with patients identifying as white, using private insurance, and using English for care, respectively. In multivariable regression, Black race (adjusted OR: 2.12, 95% CI: 1.16, 3.87; P = .014) and public/no insurance (adjusted OR: 1.81, 95% CI: 1.22, 2.68; P = .003) remained significantly associated with receipt of CEC.
We found disparities in receipt of CEC by race and insurance status. Further study is needed to determine the causes of these disparities.