Human Genome Editing and a Global Socio-bioethics Approach

A global socio-bioethics is called upon to address the ethical challenges arising from the revolutionary gene editing technologies such as CRISPR-Cas9, which offers the capability to rewrite the human genome. The ethical inquiry Françoise Baylis has undertaken in the book Altered Inheritance: CRISPR and the Ethics of Human Genome Editing (Harvard University Press, 2019) operates at individual, societal and global levels. Baylis has not only presented insights on how to practice “slow science” and achieve broad societal consensus through empowering the public, but she also shown what a global socio-bioethics approach can offer for the further development of bioethics.     

Toward an Ethically Sensitive Implementation of Noninvasive Prenatal Screening in the Global Context

Noninvasive prenatal screening using cell‐free DNA, which analyzes placental DNA circulating in maternal blood to provide information about fetal chromosomal disorders early in pregnancy and without risk to the fetus, has been hailed as a potential “paradigm shift” in prenatal genetic screening. Commercial provision of cell‐free DNA screening has contributed to a rapid expansion of the tests included in the screening panels. The tests can include screening for sex chromosome anomalies, rare subchromosomal microdeletions and aneuploidies, and most recently, the entire fetal genome. The benefits of this screening tool are generally framed, by both providers and commercial laboratories, as enhancing reproductive autonomy and choice by providing an earlier, simpler, and more accurate screening while potentially reducing the need for invasive follow‐up testing. The majority of the literature has explored these issues empirically or conceptually from a European or North American vantage point, one that assumes normative priorities such as individual reproductive autonomy and the clinical availability of maternal health care or prenatal screening programs within which cell‐free DNA screening is offered. While its implementation has raised both challenges and opportunities, very little is known about real‐world experiences and the implications of the rapid introduction of cell‐free DNA screening outside of North America and Europe, especially in low‐ and middle‐income countries. To begin addressing this gap in knowledge, we organized a four‐day international workshop to explore the ethical, legal, social, economic, clinical, and practical implications of the global expansion of cell‐free DNA screening. We describe eight key insights that arose from the workshop.     

Global Disparity and Solidarity in a Pandemic

While the domestic effect of structural racism and other social vulnerabilities on Covid-19 mortality in the United States has received some attention, there has been much less discussion (with some notable exceptions) of how structural global inequalities will further exacerbate Covid-related health disparity across the world. This may be partially due to the delayed availability of accurate and comparable data from overwhelmed systems, particularly in low- and middle-income countries. However, early methods to procure and develop treatments and vaccines by some high-income countries reflect ongoing protectionist and nationalistic attitudes that can systemically exclude access for people in regions with weaker health systems. What's needed is a global coordinated effort, based on the principle of solidarity, to foster equitable health care access.     

Medical education in Albania: Challenges and opportunities

Albania is a small south-eastern European country still recovering from almost half a century of a fierce communist regime. While major reform and support have focused on healthcare and higher education (HE) in the past decade, there have not been major attempts to improve medical education. The time is now ready for medical education improvements created by increasing internal and external pressures as Albania aims to align its HE with the European Union standards and adapts the Bologna system. This article presents a summary of the current status of undergraduate, postgraduate and continuous medical education in Albania and suggests opportunities for development and partnerships that would help the country's medical education reform.     

Policy as Product: Morality and Metaphor in Health Policy Discourse

Where we once spoke in military terms, we now often wield the language of the market: health care is a “product” and we are its “providers” and “consumers.” The market metaphor constrains in various ways our vision of the goals we pursue in making health policy, of the options available to us in pursuing them, indeed—because policy implies a certain view of moral agency—of the way we relate to each other.     

Designated Organ Donation: Private Choice in Social Context

Public appeals for organ donation to an identified individual raise serious ethical questions about the role of the media, the physician, the prospective recipient, and the donor in the procurement process.     

Medicare and Advance Planning: The Importance of Context

In January 2016, a long‐delayed Medicare change took effect. The Medicare program will now reimburse doctors for time they spend talking with patients about end‐of‐life care. This is the move that Sarah Palin and other Affordable Care Act critics said would authorize government “death panels” to decide whether older Americans should live or die. Today virtually no one buys into Palin's death panel rhetoric. But many people do think the Medicare change is a big deal. Representative Earl Blumenauer, a Democrat from Oregon who sponsored the original ACA reimbursement proposal, lauded the Medicare provision as “a turning point in end‐of‐life care.” Others are not so sure about that. After all, laws promoting advance care planning have existed for decades. The federal Patient Self‐Determination Act of 1990 and the many court decisions and state laws supporting advance care planning have had relatively little impact. Similarly, legal recognition of physician orders for life‐sustaining treatment as advance planning instruments have not produced the improvements that were predicted. And from a broad perspective, advance care planning is a small piece of the puzzle. The effort to improve end‐of‐life care must take into account the limitations of advance decision‐making, as well as the overriding importance of the general standard of care for terminally ill patients.     

Global minimum essential requirements: a road towards competence-oriented medical education

With the growing globalization of medicine and the emerging concept of a 'global profession of physicians', the issue of the essential competences that all physicians must possess becomes sharply focused. If defined, these competences would help indicate what teachers are supposed to teach, what students are expected to learn and what educational experiences all physicians must have. The 'minimum essential competences' that all graduates must have if they wish to be called physicians were identified by the Institute for International Medical Education (IIME), sponsored by the China Medical Board of New York, through working groups of educational and health policy experts and representatives of major international medical education organizations. In the first phase of the project, seven domains have been identified that define the knowledge, skills, professional behavior and ethics that all physicians must have, regardless of where they received their general medical training. Appropriate tools to assess each of the domains have been identified. In the second phase of the project the 'global minimum essential requirements' (GMER) will be implemented experimentally in a number of Chinese medical schools. The aim of the third phase will be to share the outcomes of this educational experiment, aimed at improving the quality of medical education, with the global education community.     

Sensing the Airs: The Cultural Context for Breathing and Breathlessness in Uruguay

The sensory experience of breathing, particularly the sensation of breathlessness in the case of chronic obstructive pulmonary disease (COPD), is a rich though understudied topic in medical anthropology. Fieldwork in Uruguay made it clear to me that to study the sensorial experience of breathlessness, I would also have to study the widely shared cultural conceptualizations and practices surrounding air, breath, and health. In this article, I illustrate ethnographically how the experience of breathing and breathlessness is closely tied to perceptions of air outside the body – in particular humidity, temperature change, wind, and contamination. In conceptualizing breath as the mechanism and air the medium for environmental embodiment, I bring together sensorial medical anthropology, anthropology of the body, and the anthropology of wind and climate. My findings, in light of similar findings across contexts, suggest that a body transformed by COPD is hyperperceptive and hypersensitive to changes in air.     

Genetic Counseling: The Sorrow and the Policy

Book reviewed in this article: Coping with Genetic Disorders . By John C. Fletcher. Genetics, Ethics and Parenthood . Edited by Karen Lebacqz. Screening and Counseling for Genetic Conditions: The Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs . A report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.     

Challenges and issues in health professions education in Africa

The challenges facing health professions education in Africa focus on physical infrastructure, accreditation systems, student selection and faculty recruitment, retention, and development. Higher education in the health professions must be closely aligned with community health needs, and with the training and support of community health workers. A key ingredient in changing institutions in this way is implementation of effective strategies for strengthening the faculty. In addition, information systems, and their prerequisite stable electric power supply, must be supported by internal public resources combined with external aid. These infrastructure investments will facilitate better quality education, improved diffusion of information among schools, and more useful data for self study by institutions.     

Ostriches and Obligations: Ethical Challenges Facing Research on Usual Care

In recent years, a robust body of scholarship has emerged that examines ethical challenges facing the learning health organization model. In “Bystander Ethics and Good Samaritanism,” James Sabin and colleagues make a valuable addition to this scholarship, identifying and exploring the important question of what researchers' obligations are to patients receiving “usual care” if “that care is seen as suboptimal.” The central issue that Sabin et al. faced was whether it would be acceptable for researchers to identify patients with untreated atrial fibrillation but then assign them to a control group that would not receive education about the importance of oral anticoagulation. The authors present this challenge as an issue of “bystander ethics.” To avoid being “bystanders” to identified instances of suboptimal care, the research team decided to instead identify a “delayed intervention” group for which they would not determine the members' anticoagulation status, thereby preventing them from knowing that specific patients met the criteria for oral anticoagulants but were not using them. This “workaround” approach strikes me as disingenuous.     

Context is Key: an interactive experiential and content frame game

Most games used for teaching focus on either content transfer or an experiential learning experience. 'Context is Key' is a combination of both as the learners actively interact experientially with the content being taught, with fellow learners and with the facilitator(s). Using this interactive game after a didactic portion of teaching can reinforce the knowledge in ways that require synthesis of the knowledge for application and encourage group discussion and the sharing of knowledge that participants possess. This game was originally created to highlight the complexities of the differential diagnosis of bipolar disorder in adolescents. By playing the game, students can understand why psychiatric symptoms on their own are not as valuable as placing them within the context of symptom clusters, how it takes time to make an accurate diagnosis for complex presentations of symptoms, how to sort symptoms that have similar presentations and why 'Context is Key!'     

Development and implementation of a cardiovascular system course at the International Medical College: a new innovation in medical education

The International Medical College (IMC) was established in Kuala Lumpur in 1993 in partnership with several established medical schools, to provide a preclinical curriculum for students before they complete their clinical training in the partner schools.The curriculum is system based and multidisciplinary with an emphasis on problem-based learning. This paper describes the planning and implementation of the cardiovascular system course at the IMC.The development of the course matrix was defined in terms of the weekly themes and course content with the Study Guide providing an interface between the curriculum planners and the students.The timetable of learning experiences included the plenary sessions, practicals, small-group learning, clinical skills and hospital experiences. The strengths and weaknesses of the first iteration of this course at the IMC are discussed and reviewed in relation to the performance of students on their final examinations and their evaluation of the presentation of the course.