- Bibliography
- Subscribe
- News
-
Referencing guides Blog Automated transliteration Relevant bibliographies by topics
Log in
Українська Français Italiano Español Polski Português Deutsch
We are proudly a Ukrainian website. Our country was attacked by Russian Armed Forces on Feb. 24, 2022.
You can support the Ukrainian Army by following the link: https://u24.gov.ua/. Even the smallest donation is hugely appreciated!
Relevant bibliographies by topics / United States. Merit Systems Protection Board / Journal articles
To see the other types of publications on this topic, follow the link: United States. Merit Systems Protection Board.
Author: Grafiati
Published: 4 June 2021
Last updated: 27 July 2024
Create a spot-on reference in APA, MLA, Chicago, Harvard, and other styles
Consult the top 16 journal articles for your research on the topic 'United States. Merit Systems Protection Board.'
Next to every source in the list of references, there is an 'Add to bibliography' button. Press on it, and we will generate automatically the bibliographic reference to the chosen work in the citation style you need: APA, MLA, Harvard, Chicago, Vancouver, etc.
You can also download the full text of the academic publication as pdf and read online its abstract whenever available in the metadata.
Browse journal articles on a wide variety of disciplines and organise your bibliography correctly.
1
Vaughn,RobertG. "THE PERFORMANCE OF THE UNITED STATES MERIT SYSTEMS PROTECTION BOARD: THE FOUNDATION FOR FUTURE REGULATION." Policy Studies Journal 17, no.2 (December 1988): 352–69. http://dx.doi.org/10.1111/j.1541-0072.1988.tb00587.x.
Full textAPA, Harvard, Vancouver, ISO, and other styles
2
Nazzini, Renato. "Administrative enforcement, judicial review and fundamental rights in EU competition law: A comparative contextual-functionalist perspective." Common Market Law Review 49, Issue 3 (June1, 2012): 971–1005. http://dx.doi.org/10.54648/cola2012036.
Full textAbstract:
This article examines whether the current institutional framework for the enforcement of EU competition law under Regulation 1/2003 is compatible with the principle of effective judicial protection. This question is answered by developing a test which takes into account, in a structured way, all the contextual factors of the case in the light of the objective pursued by the Legislature in enacting a given enforcement system. Comparative analysis of United States and Canadian constitutional law provides key insights for the development of such a test. This article concludes that the current system under Regulation 1/2003 is unconstitutional insofar as judicial review of Commission decisions by the EU courts is deferential. However, while the current trend is to move to a correctness standard of review across the board, a system in which a competition authority with sufficient safeguards of independence and impartiality of the decision-maker is subject to deferential judicial review in appropriately defined matters is more in line with the institutional balance between the European Commission and the EU courts envisaged by the EU Treaties and Regulation 1/2003, has advantages as a matter of policy over a system in which a court has the duty to review the merits of a first instance administrative decision, and would be compatible with the constitutional standards in force in leading common law systems such as the United States and Canada.
APA, Harvard, Vancouver, ISO, and other styles
3
Radomyski, Adam. "DIAGNOSIS OF THE CIVIL AVIATION PROTECTION SYSTEM AGAINST TERRORIST ATTACKS IN THE UNITED STATES." Rocznik Bezpieczeństwa Morskiego XIII (January24, 2020): 2–3. http://dx.doi.org/10.5604/01.3001.0013.7487.
Full textAbstract:
The article presents the results of research that focus on the problem of developing by the United States effective legal, organizational and technical so-lutions to increase the security of civil aviation, including passengers on board aircraft and at airports. An important part of scientific considerations was to characterize the organization of security systems at airports operating in the United States. The presented results are not limited to the theoretical aspects of counteracting terrorism, but also characterize practical organizational and technical projects implemented in the aviation security system in the USA
APA, Harvard, Vancouver, ISO, and other styles
4
Ghahramani, Salar. "Corporate Governance and Equal Protection: Legal Challenges to State-Mandated Diversity in Corporate Boards." Business Law Review 44, Issue 2 (April1, 2023): 100–103. http://dx.doi.org/10.54648/bula2023011.
Full textAbstract:
This article examines the constitutional challenges that lawmakers in the United States may face when devising legislation intended to increase the diversity of corporate boards of directors, based on factors such as gender and race. Specifically, the study evaluates two California statutes that imposed quota systems on private corporations in order to increase board membership by women and others from under-represented communities. The article then analyses the courts’ rationale for deeming the legislative measures unconstitutional and concludes by proposing that extra-governmental methods, such as shareholder activism or stock exchange-imposed diversity requirements, may prove more durable in advancing board diversity interests than legislation.
APA, Harvard, Vancouver, ISO, and other styles
5
Boubaker, Sabri. "Editorial: Advances in corporate governance practices." Corporate Board role duties and composition 17, no.1 (2021): 4–6. http://dx.doi.org/10.22495/cbv17i1editorial.
Full textAbstract:
Corporate governance has gone through three decades of profound changes in terms of new regulations, new practices, and environmental conditions. Many countries drafted guidelines for best corporate governance practices following Cadbury report (Cadbury, 1992). These practices were mainly related to the board of directors (composition and functioning), internal controls, and internal audit. The Enron scandal followed by the collapse of Arthur Andersen, one of the big five audit firms, and the enactment of the “Public Company Accounting Reform and Investor Protection Act” (Sarbanes-Oxley law) in 2002 were other milestones in the evolution of corporate governance. This law brought about significant changes related to public company accounting oversight, auditor independence, financial disclosure, and corporate responsibility. The financial crisis in 2008 started in the United States and has shaken the world economy. This crisis was due to weak corporate governance that led to fraudulent financial reporting and excessive risk-taking. Grove and Victoravich (2012) consider CEO duality, lack of board independence, weak management control systems, short-termism, weak codes of ethics, and opaque disclosures among the main drivers of this crisis. The COVID-19 has consistently shown that firms with better corporate governance and corporate social responsibility practices were the most resilient entities during the first quarter of the pandemic (Ramelli & Wagner, 2020). All these topics are addressed in this collection of high-quality research papers of this year’s first issue of Corporate Board: Role, Duties, and Composition.
APA, Harvard, Vancouver, ISO, and other styles
6
Benson,LenniB. "Immigration Adjudication: The Missing “Rule of Law”." Journal on Migration and Human Security 5, no.2 (June 2017): 331–55. http://dx.doi.org/10.1177/233150241700500206.
Full textAbstract:
The United States spends more than $19 billion each year on border and immigration enforcement.1 The Obama administration removed more people in eight years than the last four administrations combined.2 Yet, to the Trump administration, enforcement is not yet robust enough. Among other measures, the administration favors more expedited and summary removals. More than 80 percent3 of all removal orders are already issued outside the court process: When the Department of Homeland Security (DHS) uses summary removal processes, both access to counsel and an immigration judge can be nearly impossible. Advocates and policy analysts are equally concerned that a backlog of over 545,000 immigration court cases creates delay that harm people seeking asylum and other humanitarian protection. Recent use of priority or “rocket” dockets in immigration court and lack of appointed counsel also interfere with the fair adjudication of claims. Thus the administrative removal system is criticized both for being inefficient and moving too slowly, on the one hand, and for moving too quickly without adequate procedural safeguards, on the other. Both critiques have merit. The challenge is to design, implement, and most critically, maintain an appropriately balanced adjudication system. While it is clear that US removal procedures need reform, process alone will not be able to address some of the systematic flaws within the system. Ultimately, the DHS will need to refine and prioritize the cases that are placed into the system and the government needs new tools, widely used in other adjudication systems, that can reduce backlogs, incentivize cooperation, and facilitate resolution. Congress should similarly reexamine the barriers to status and avenues for regularization or preservation of status. The paucity of equitable forms or relief and the lack of statutes of limitation place stress on the immigration court system. The lack of appointed counsel has a dramatic impact on case outcomes. Without counsel, the rule of law is barely a constraint on government authority. Conversely, a system of appointed counsel could lead to efficiencies and to a culture of negotiation and settlement within the immigration court system. DHS has increasingly used every tool in its arsenal to expeditiously remove people from the United States and most of these tools bypass judicial hearings. In these “ministerial” or expedited forms of removal, there is no courtroom, there is no administrative judge, and there are rarely any opportunities for legal counsel to participate. Moreover, there is rarely an opportunity for federal judicial review. In these settings, the rule of law is entirely within the hands of Immigration and Customs Enforcement (ICE) or Customs and Border Protection (CBP) officers who serve as both prosecutor and judge. There is little record keeping and almost no avenue for administrative or judicial review. This paper will argue that the rule of law is missing in the US removal adjudication system, and will propose ways in which it can be restored.
APA, Harvard, Vancouver, ISO, and other styles
7
Nyquist, Ann-Christine, SusanM.Rattigan, CynthiaL.Gibert, Geoffrey Gorse, TrishM.Perl, TrishM.Perl, ConnieS.Price, et al. "1204. Increased Risk of Respiratory Infections Among Healthcare Personnel (HCP) Caring for Children." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S432—S433. http://dx.doi.org/10.1093/ofid/ofz360.1067.
Full textAbstract:
Abstract Background Healthcare personnel (HCP) are exposed to many individuals with respiratory illness while providing care. Because children more frequently present for care with respiratory infections compared with older individuals, we hypothesized that HCP working in pediatric settings might experience greater risks of respiratory infection than HCP working in adult settings. The Respiratory Protection Effectiveness Clinical Trial (ResPECT) prospectively compared respiratory protection among HCP at seven health systems across the United States between 2011 and 2015. Methods Swabs were collected from asymptomatic participants twice each respiratory season. Swabs were collected from symptomatic HCP within 24 hours of self-reported respiratory symptoms and again if participants were still symptomatic after 7 days. PCR confirmation for 13 viruses was done by a single laboratory. We compared hazards of multiple outcomes associated with respiratory infections among HCP working in pediatric clinics and HCP working in clinics that care for adults. Results The main outcomes were risk factors for symptomatic and asymptomatic viral respiratory infections. A total of 5,180 participant-seasons were evaluated from 2011–2015, 1,130 of which worked solely with children. There were 403 and 1,162 incidents of asymptomatic and symptomatic PCR-confirmed respiratory infection, respectively. Risk factors associated with respiratory infection in the entire cohort included age, race, vaccination status, smoking status, wearing contacts, total household members, study site, and age of patient population. HCP working exclusively with pediatric patients had 1.5 (95% CI 1.2–1.8) times the rate of respiratory virus infection compared with HCP working only with adults. HCP who worked with both populations had 1.4 times (95% CI: 1.2–1.7) the rate of infection with respiratory viruses. Conclusion The risk of respiratory infections was increased among HCP that saw children. This risk was not mitigated by working only part-time with children and extended to those who identified as working with both adult and pediatric populations. Our findings highlight the need to target interventions in pediatric settings to decrease HCP acquisition of respiratory infections. Disclosures Trish M. Perl, MD; MSc, 7–11: Advisory Board; medimmune: Research Grant.
APA, Harvard, Vancouver, ISO, and other styles
8
Murugan, Raghavan, Chung-ChouH.Chang, Maham Raza, Nasrin Nikravangolsefid, DavidT.Huang, PaulM.Palevsky, and Kianoush Kashani. "Restrictive versus Liberal Rate of Extracorporeal Volume Removal Evaluation in Acute Kidney Injury (RELIEVE-AKI): a pilot clinical trial protocol." BMJ Open 13, no.7 (July 2023): e075960. http://dx.doi.org/10.1136/bmjopen-2023-075960.
Full textAbstract:
IntroductionObservational studies have linked slower and faster net ultrafiltration (UFNET) rates during kidney replacement therapy (KRT) with mortality in critically ill patients with acute kidney injury (AKI) and fluid overload. To inform the design of a larger randomised trial of patient-centered outcomes, we conduct a feasibility study to examine restrictive and liberal approaches to UFNETduring continuous KRT (CKRT).Methods and analysisThis study is an investigator-initiated, unblinded, 2-arm, comparative-effectiveness, stepped-wedged, cluster randomised trial among 112 critically ill patients with AKI treated with CKRT in 10 intensive care units (ICUs) across 2 hospital systems. In the first 6 months, all ICUs started with a liberal UFNETrate strategy. Thereafter, one ICU is randomised to the restrictive UFNETrate strategy every 2 months. In the liberal group, the UFNETrate is maintained between 2.0 and 5.0 mL/kg/hour; in the restrictive group, the UFNETrate is maintained between 0.5 and 1.5 mL/kg/hour. The three coprimary feasibility outcomes are (1) between-group separation in mean delivered UFNETrates; (2) protocol adherence; and (3) patient recruitment rate. Secondary outcomes include daily and cumulative fluid balance, KRT and mechanical ventilation duration, organ failure-free days, ICU and hospital length of stay, hospital mortality and KRT dependence at hospital discharge. Safety endpoints include haemodynamics, electrolyte imbalance, CKRT circuit issues, organ dysfunction related to fluid overload, secondary infections and thrombotic and haematological complications.Ethics and disseminationThe University of Pittsburgh Human Research Protection Office approved the study, and an independent Data and Safety Monitoring Board monitors the study. A grant from the United States National Institute of Diabetes and Digestive and Kidney Diseases sponsors the study. The trial results will be submitted for publication in peer-reviewed journals and presented at scientific conferences.Trial registration numberThis trial has been prospectively registered with clinicaltrials.gov (NCT05306964). Protocol version identifier and date: 1.5; 13 June 2023.
APA, Harvard, Vancouver, ISO, and other styles
9
KONG, Hyejung Grace. "The Historical Context of the Emergence of Health Systems Science (HSS): Changes in the U.S. Healthcare System and Medical Education from the 1910s to the 2010s." Korean Journal of Medical History 32, no.2 (August31, 2023): 623–59. http://dx.doi.org/10.13081/kjmh.2023.32.623.
Full textAbstract:
This study traces the historical process of the emergence of Health Systems Science (HSS) over one hundred years from the 1910s to the 2010s. HSS is a discipline introduced in American medical education as a “third pillar” in addition to basic medical science and clinical medical science. HSS comprises seven core functional domains and four foundational domains, all surrounded by ‘system thinking.’ According to statistics from 2019 to 2020, 129 universities, or 83.2% of all allopathic and osteopathic medical schools taught HSS before medical clerkship. Additionally, 108 universities, or 69.7% of all medical schools taught HSS during medical clerkship.</br>Although the Progressives in the 1910s sparked discussions about reforming the U.S. national health care system, the National Health Insurance (NHI) debate did not make significant progress from the 1920s through World War II. Efforts to reform the healthcare system gained momentum again in the 1960s. In 1965, a social health insurance program for the elderly called “Medicare” was enacted by revamping the existing social security program. Around the same time, “Medicaid” was also implemented as government-funded health insurance program, distinguishing it from Medicare—a mix of social insurance and government assistance. During the Clinton presidency in the 1990s, political efforts to achieve the NHI by enacting the Health Security Act eventually failed. Almost twenty years later, President Barrack Obama passed the Patient Protection and Affordable Care Act, or ObamaCare, in March 2010. The primary objectives of ObamaCare were to increase the number of insured Americans and reduce health care costs. Post-ObamaCare reforms to the healthcare payment system and changes to the healthcare delivery system have prompted a transformation of the healthcare landscape. The healthcare industry has been pursuing the “triple aim”: improving patient experience and population health while reducing costs. To achieve these goals, exposure to a systems-based healthcare environment was necessary.</br>From the 1910s to the 1960s, the model of the ideal physician was the “sovereign physician,” who could perform all tasks unilaterally. During this time, doctors were autonomous, independent, and authoritative, and in control of all medical activities. This model was very useful until the mid-twentieth century, when there were many acute illnesses, mainly infectious diseases. Abraham Flexner’s 1910 report eventually accelerated the formation of a medical education system based on the two pillars of “basic science—clinical science.” During the periods of the 1920s and 1940s, medical education underwent a process of professionalization, standardization, and systematization. World War II did not result in significant changes in medical education. The United States, however, was transforming into a very different society from the prewar period for physicians and Americans. The “New Deal” and World War II led to an expanded role of the federal and state governments in the post-war years. The demand for healthcare was also growing, and the right to healthcare was seen as a fundamental right of all citizens.</br>In the 1960s and 1970s, the current U.S. medical education system was established. Four years of medical school, an internship, and a residency before taking the board examination became the institutional requirements. In the 1980s and 1990s, ‘managed care,’ represented by Healthcare Maintenance Organizations (HMOs) and Preferred Provider Organizations (PPOs), placed strong controls on both doctors and hospitals (academic healthcare centers). Under the managed care system, academic healthcare centers financially struggled. Moreover, the learning environment on the wards was eroded by shorter patient stays and increased outpatient visits.</br>Since the late 1990s, many medical education organizations, including the Council on Graduate Medical Education (COGME), have called for dramatic reforms to the knowledge and skills of physician education to restore a sustainable U.S. healthcare system. Since 2000, the basic framework of HSS, such as patient safety and value-based healthcare, has been developed. In summary, U.S. healthcare reform efforts since the 1960s—including the expansion of health insurance, managed care and managed competition, and ObamaCare—have led to changes in medical education.
APA, Harvard, Vancouver, ISO, and other styles
10
Sun,JeffreyC. "Gaps, guesswork, and ghosts lurking in technology integration: Laws and policies applicable to student privacy." British Journal of Educational Technology, August25, 2023. http://dx.doi.org/10.1111/bjet.13379.
Full textAbstract:
Technology integration and learning analytics offer insights to improve educational experiences and outcomes. In advancing these efforts, laws and policies govern these environments placing protections, standards, and developmental opportunities for higher education, students, faculty, and even the nation‐state. Nonetheless, evidence of educational restrictions, encumbered actions, and archaic approaches pervades the legal literature and case law demonstrating that these laws and policies do not always function well in evolving and emerging technology spaces. To examine these laws and policies of student privacy, the author employs the combination of a critical policy analysis, which derives from critical social research as a means to explore discourse and policy through drawing out the policy contexts, texts, and consequences, and Flood's liberating systems theory, which directs the analysis to a problem‐solving approach by examining the policy discourse from a systems‐thinking lens. Based on a review of 184 court cases, 74 policies from a diversified representation of US states/territories, and seven developed nations or multi‐nation consortia, this examination illuminates how context and text such as the type and setting of the privacy matter (eg, various freedom of information acts, educational records under the Family Educational Rights and Privacy Act, and General Data Protection Regulation in the European Union) presents opportunities for protections and standardization efforts; however, they also illustrate significant protection gaps, guesswork and insufficiency around the type and degree of data subject consent, and ghosting effects of data subjects' protections. While the extant literature already supports aspects of these findings, it does not account for this holistic view of these three privacy vulnerabilities—especially in light of the principles to which these laws purport to achieve. Moreover, the three identified privacy vulnerabilities suggest overlooked inclusion of two overarching privacy concepts—transparency and equity. This study recommends that key actors in the policy construction realm (ie, university leaders, policymakers, and judges) should engage in analyses, dialogue, and consideration about transparency and equity by considering contemporary privacy problems in the contexts of artificial intelligence, quantum computing, and cybersecurity as a way to improve transparent and equitable policies in these areas rather than exacerbating the privacy dilemmas already in place. Practitioner notesWhat is already known about this topic In the United States, the Family Educational Rights and Privacy Act of 1974 (FERPA) and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) are well documented evidence of privacy protections for education and health records, but they fail to offer sufficient protections for students as data subjects with emerging technologies. Existing federal‐level laws in the United States do not offer a systematic or uniform approach in the manner that data users obtain consent, so data subjects are largely unaware of what is being consented. Other than matters of consent, policy strategies based on student privacy laws (ie, voluntary consensus standards, basic practices to maintain privacy, an ethics review board, data/record retention and destruction, and data sanitation of equipment) are significant and informative largely from the university‐perspective, not the students as data subjects. What this paper adds A new comprehensive examination of US laws including statutes, regulations, and cases as well as seven key nation‐state or national consortia laws—especially the EU's General Data Protection Regulation and selected state laws in the United States, which offer consistent and greater student privacy protections. Insights about the principles designed among the laws, which centre around their application, essentiality, consent, and security. Attention to areas in which student privacy laws still present privacy concerns, but specifically identifying issues of significant gaps, guesswork and insufficiency around levels and types of consent, and ghosting effects of data subjects' protections. Implications for practice and/or policy Data subject consent should be established and consistent– whether an opt‐out provision, opt‐in provision, or some extensive engagement. Student privacy policies should incorporate principles of transparency and equity for data subjects and data treatment. Policymakers should consider now how the intersections of data subject privacy matters shall be addressed in the context of artificial intelligence, quantum computing, and cybersecurity.
APA, Harvard, Vancouver, ISO, and other styles
11
Meruva, Prathik, Andrew Matheaus, ChristopherA.Sharp, JamesE.McCarthy, ThomasA.Collins, and Ameya Joshi. "Meeting future NOX emissions using an electric heater in an advanced aftertreatment system." Frontiers in Mechanical Engineering 8 (September6, 2022). http://dx.doi.org/10.3389/fmech.2022.979771.
Full textAbstract:
Engine and aftertreatment solutions are being identified to meet the upcoming ultra-low NOx regulations on heavy duty vehicles as published by the California Air Resources Board (CARB) and proposed by the United States Environmental Protection Agency (US EPA) for the year 2027 and beyond. These standards will require changes to current conventional aftertreatment systems for dealing with low exhaust temperature scenarios. One approach to meeting this challenge is to supply additional heat from the engine; however, this comes with a fuel penalty which is not attractive and encourages other options. Another method is to supply external generated heat directly to the aftertreatment system. The following work focuses on the later approach by maintaining the production engine calibration and coupling this with an Electric Heater (EH) upstream of a Light-Off Selective Catalytic Reduction (LO-SCR) followed by a primary aftertreatment system containing a downstream Selective Catalytic Reduction (SCR). External heat is supplied to the aftertreatment system using an EH to reduce the Tailpipe (TP) NOx emissions with minimal fuel penalty. Two configurations have been implemented, the first is a Close Coupled (CC) LO-SCR configuration and the second is an Underfloor (UF) LO-SCR configuration. The CC LO-SCR configuration shows the best outcome as it is closer to the engine, helping it achieve the required temperature with lower EH power while the UF LO-SCR configurations addresses the real-world packaging options for the LO-SCR. This work shows that a 7 kW EH upstream of a LO-SCR, in the absence of heated Diesel Exhaust Fluid (DEF), followed by a primary aftertreatment system met the 2027 NOx regulatory limit. It also shows that the sub-6-inch diameter EH with negligible pressure drop can be easily packaged into the future aftertreatment system.
APA, Harvard, Vancouver, ISO, and other styles
12
Glidden, Emily, Laurel Boyd, Jay Schauben, PrakashR.Mulay, and Royal Law. "Poison center data for public health surveillance: Poison center and public health perspectives." Online Journal of Public Health Informatics 10, no.1 (May22, 2018). http://dx.doi.org/10.5210/ojphi.v10i1.8592.
Full textAbstract:
ObjectiveTo discuss the use of poison center (PC) data for public health (PH) surveillance at the local, state, and federal levels. To generate meaningful discussion on how to facilitate greater PC and PH collaboration.IntroductionSince 2008, poisoning is the leading cause of injury-related death in the United States; since 1980, the poisoning-related fatality rate in the United States (U.S.) has almost tripled1. Many poison-related injuries and deaths are reported to regional PCs which receive about 2.4 million reports of human chemical and poison exposures annually2. Federal, state, and local PH agencies often collaborate with PCs and use PC data for PH surveillance to identify poisoning-related health issues. Many state and local PH agencies have partnerships with regional PCs for direct access to local PC data which help them perform this function. At the national level, the National Center for Environmental Health (NCEH) of the Centers for Disease Control and Prevention (CDC) conducts PH surveillance for exposures and illnesses of PH significance using the National Poison Data System (NPDS), the national PC reporting database and real-time surveillance system.Though most PC and PH officials agree that PC data play an important role in PH practice and surveillance, collaboration between PH agencies and PCs can be hindered by numerous challenges. To address these challenges and bolster collaboration, the PC and PH Collaborations Community of Practice (CoP) has collaborated with members to provide educational webinars; newsletters highlighting the intersection of PH and PC work; and in-person meetings at relevant national and international conferences. The CoP includes over 200 members from state and local PH departments, regional PCs, CDC, the American Association of Poison Control Centers (AAPCC), and the U.S. Environmental Protection Agency (EPA).DescriptionThe panel will consist of 3 presenters and 1 moderator, who are members of the CoP. Each presenter will bring a unique perspective on the use of PC data for PH practice and surveillance. Dr. Prakash Mulay is the surveillance coordinator for chemical related illnesses and injuries in Florida. His primary focus is on carbon monoxide, pesticide, mercury, and arsenic poisoning. He also works as a liaison between the Florida Poison Information Centers and Department of Health. Dr. Mulay has a Medical Degree from India and a Masters of Public Health (MPH) in epidemiology from Florida International University, Miami. For the purpose of the panel discussion, Dr. Mulay will provide PC PH collaboration from the state perspective.Dr. Jay Schauben is the Director of the Florida/United States Virgin Islands Poison Information Center in Jacksonville, the Florida Poison Information Center Network Data Center, and the Clinical Toxicology Fellowship Program at University of Florida Health-Jacksonville Medical Center/University of Florida Health Science Center. He is board-certified in clinical toxicology and is a Fellow of the American Academy of Clinical Toxicology. In 1992, Dr. Schauben implemented the Florida Poison Information Center in Jacksonville and played a major role in crafting the Statewide Florida Poison Information Center Network. On the panel, Dr. Schauben will provide collaboration insight from the PC perspective.Dr. Royal Law is the surveillance and technical lead for the National Chemical and Radiological Surveillance Program, housed within the Health Studies Branch at the CDC. He received his PhD in Public Health from Georgia State University and his MPH at Emory University. Dr. Law will provide insight from the national level including CDC use of PC data for public health surveillance activities.How The Moderator Intends to Engage the AudienceAfter the panel members have been introduced and shared their contributions and experiences with PC PH collaboration the moderator will engage the audience by facilitating discussion of the successes and challenges to using PC data for PH practice and surveillance.Sample questions:What are your current capacities and collaborative activities between your state/local health department and your PC?What non-funding related barriers hinder the collaboration between your state/local health department and PC?If no increase in funding were available, how would you increase the level of interactivity with the PC and state/local health department? What if funding was available?References1Warner M, Chen LH, Makuc DM, Anderson RN, and Minino AM. Drug Poisoning Deaths in the United States, 1980–2008. National Center for Health Statistics Data Brief, December 2011. Accessed 8/29/2012.2Mowry JB, Spyker DA, Brooks DE, Zimmerman A, Schauben JL (2016) 2015 Annual Report of the American Association of Poison Control Centers’ National Poison Data Systems (NPDS): 33rd Annual Report, Clinical Toxicology, 54:10, 924-1109.
APA, Harvard, Vancouver, ISO, and other styles
13
Maxwell, Richard, and Toby Miller. "The Real Future of the Media." M/C Journal 15, no.3 (June27, 2012). http://dx.doi.org/10.5204/mcj.537.
Full textAbstract:
When George Orwell encountered ideas of a technological utopia sixty-five years ago, he acted the grumpy middle-aged man Reading recently a batch of rather shallowly optimistic “progressive” books, I was struck by the automatic way in which people go on repeating certain phrases which were fashionable before 1914. Two great favourites are “the abolition of distance” and “the disappearance of frontiers”. I do not know how often I have met with the statements that “the aeroplane and the radio have abolished distance” and “all parts of the world are now interdependent” (1944). It is worth revisiting the old boy’s grumpiness, because the rhetoric he so niftily skewers continues in our own time. Facebook features “Peace on Facebook” and even claims that it can “decrease world conflict” through inter-cultural communication. Twitter has announced itself as “a triumph of humanity” (“A Cyber-House” 61). Queue George. In between Orwell and latter-day hoody cybertarians, a whole host of excitable public intellectuals announced the impending end of materiality through emergent media forms. Marshall McLuhan, Neil Postman, Daniel Bell, Ithiel de Sola Pool, George Gilder, Alvin Toffler—the list of 1960s futurists goes on and on. And this wasn’t just a matter of punditry: the OECD decreed the coming of the “information society” in 1975 and the European Union (EU) followed suit in 1979, while IBM merrily declared an “information age” in 1977. Bell theorized this technological utopia as post-ideological, because class would cease to matter (Mattelart). Polluting industries seemingly no longer represented the dynamic core of industrial capitalism; instead, market dynamism radiated from a networked, intellectual core of creative and informational activities. The new information and knowledge-based economies would rescue First World hegemony from an “insurgent world” that lurked within as well as beyond itself (Schiller). Orwell’s others and the Cold-War futurists propagated one of the most destructive myths shaping both public debate and scholarly studies of the media, culture, and communication. They convinced generations of analysts, activists, and arrivistes that the promises and problems of the media could be understood via metaphors of the environment, and that the media were weightless and virtual. The famous medium they wished us to see as the message —a substance as vital to our wellbeing as air, water, and soil—turned out to be no such thing. Today’s cybertarians inherit their anti-Marxist, anti-materialist positions, as a casual glance at any new media journal, culture-industry magazine, or bourgeois press outlet discloses. The media are undoubtedly important instruments of social cohesion and fragmentation, political power and dissent, democracy and demagoguery, and other fraught extensions of human consciousness. But talk of media systems as equivalent to physical ecosystems—fashionable among marketers and media scholars alike—is predicated on the notion that they are environmentally benign technologies. This has never been true, from the beginnings of print to today’s cloud-covered computing. Our new book Greening the Media focuses on the environmental impact of the media—the myriad ways that media technology consumes, despoils, and wastes natural resources. We introduce ideas, stories, and facts that have been marginal or absent from popular, academic, and professional histories of media technology. Throughout, ecological issues have been at the core of our work and we immodestly think the same should apply to media communications, and cultural studies more generally. We recognize that those fields have contributed valuable research and teaching that address environmental questions. For instance, there is an abundant literature on representations of the environment in cinema, how to communicate environmental messages successfully, and press coverage of climate change. That’s not enough. You may already know that media technologies contain toxic substances. You may have signed an on-line petition protesting the hazardous and oppressive conditions under which workers assemble cell phones and computers. But you may be startled, as we were, by the scale and pervasiveness of these environmental risks. They are present in and around every site where electronic and electric devices are manufactured, used, and thrown away, poisoning humans, animals, vegetation, soil, air and water. We are using the term “media” as a portmanteau word to cover a multitude of cultural and communications machines and processes—print, film, radio, television, information and communications technologies (ICT), and consumer electronics (CE). This is not only for analytical convenience, but because there is increasing overlap between the sectors. CE connect to ICT and vice versa; televisions resemble computers; books are read on telephones; newspapers are written through clouds; and so on. Cultural forms and gadgets that were once separate are now linked. The currently fashionable notion of convergence doesn’t quite capture the vastness of this integration, which includes any object with a circuit board, scores of accessories that plug into it, and a global nexus of labor and environmental inputs and effects that produce and flow from it. In 2007, a combination of ICT/CE and media production accounted for between 2 and 3 percent of all greenhouse gases emitted around the world (“Gartner Estimates,”; International Telecommunication Union; Malmodin et al.). Between twenty and fifty million tonnes of electronic waste (e-waste) are generated annually, much of it via discarded cell phones and computers, which affluent populations throw out regularly in order to buy replacements. (Presumably this fits the narcissism of small differences that distinguishes them from their own past.) E-waste is historically produced in the Global North—Australasia, Western Europe, Japan, and the US—and dumped in the Global South—Latin America, Africa, Eastern Europe, Southern and Southeast Asia, and China. It takes the form of a thousand different, often deadly, materials for each electrical and electronic gadget. This trend is changing as India and China generate their own media detritus (Robinson; Herat). Enclosed hard drives, backlit screens, cathode ray tubes, wiring, capacitors, and heavy metals pose few risks while these materials remain encased. But once discarded and dismantled, ICT/CE have the potential to expose workers and ecosystems to a morass of toxic components. Theoretically, “outmoded” parts could be reused or swapped for newer parts to refurbish devices. But items that are defined as waste undergo further destruction in order to collect remaining parts and valuable metals, such as gold, silver, copper, and rare-earth elements. This process causes serious health risks to bones, brains, stomachs, lungs, and other vital organs, in addition to birth defects and disrupted biological development in children. Medical catastrophes can result from lead, cadmium, mercury, other heavy metals, poisonous fumes emitted in search of precious metals, and such carcinogenic compounds as polychlorinated biphenyls, dioxin, polyvinyl chloride, and flame retardants (Maxwell and Miller 13). The United States’ Environmental Protection Agency estimates that by 2007 US residents owned approximately three billion electronic devices, with an annual turnover rate of 400 million units, and well over half such purchases made by women. Overall CE ownership varied with age—adults under 45 typically boasted four gadgets; those over 65 made do with one. The Consumer Electronics Association (CEA) says US$145 billion was expended in the sector in 2006 in the US alone, up 13% on the previous year. The CEA refers joyously to a “consumer love affair with technology continuing at a healthy clip.” In the midst of a recession, 2009 saw $165 billion in sales, and households owned between fifteen and twenty-four gadgets on average. By 2010, US$233 billion was spent on electronic products, three-quarters of the population owned a computer, nearly half of all US adults owned an MP3 player, and 85% had a cell phone. By all measures, the amount of ICT/CE on the planet is staggering. As investigative science journalist, Elizabeth Grossman put it: “no industry pushes products into the global market on the scale that high-tech electronics does” (Maxwell and Miller 2). In 2007, “of the 2.25 million tons of TVs, cell phones and computer products ready for end-of-life management, 18% (414,000 tons) was collected for recycling and 82% (1.84 million tons) was disposed of, primarily in landfill” (Environmental Protection Agency 1). Twenty million computers fell obsolete across the US in 1998, and the rate was 130,000 a day by 2005. It has been estimated that the five hundred million personal computers discarded in the US between 1997 and 2007 contained 6.32 billion pounds of plastics, 1.58 billion pounds of lead, three million pounds of cadmium, 1.9 million pounds of chromium, and 632000 pounds of mercury (Environmental Protection Agency; Basel Action Network and Silicon Valley Toxics Coalition 6). The European Union is expected to generate upwards of twelve million tons annually by 2020 (Commission of the European Communities 17). While refrigerators and dangerous refrigerants account for the bulk of EU e-waste, about 44% of the most toxic e-waste measured in 2005 came from medium-to-small ICT/CE: computer monitors, TVs, printers, ink cartridges, telecommunications equipment, toys, tools, and anything with a circuit board (Commission of the European Communities 31-34). Understanding the enormity of the environmental problems caused by making, using, and disposing of media technologies should arrest our enthusiasm for them. But intellectual correctives to the “love affair” with technology, or technophilia, have come and gone without establishing much of a foothold against the breathtaking flood of gadgets and the propaganda that proclaims their awe-inspiring capabilities.[i] There is a peculiar enchantment with the seeming magic of wireless communication, touch-screen phones and tablets, flat-screen high-definition televisions, 3-D IMAX cinema, mobile computing, and so on—a totemic, quasi-sacred power that the historian of technology David Nye has named the technological sublime (Nye Technological Sublime 297).[ii] We demonstrate in our book why there is no place for the technological sublime in projects to green the media. But first we should explain why such symbolic power does not accrue to more mundane technologies; after all, for the time-strapped cook, a pressure cooker does truly magical things. Three important qualities endow ICT/CE with unique symbolic potency—virtuality, volume, and novelty. The technological sublime of media technology is reinforced by the “virtual nature of much of the industry’s content,” which “tends to obscure their responsibility for a vast proliferation of hardware, all with high levels of built-in obsolescence and decreasing levels of efficiency” (Boyce and Lewis 5). Planned obsolescence entered the lexicon as a new “ethics” for electrical engineering in the 1920s and ’30s, when marketers, eager to “habituate people to buying new products,” called for designs to become quickly obsolete “in efficiency, economy, style, or taste” (Grossman 7-8).[iii] This defines the short lifespan deliberately constructed for computer systems (drives, interfaces, operating systems, batteries, etc.) by making tiny improvements incompatible with existing hardware (Science and Technology Council of the American Academy of Motion Picture Arts and Sciences 33-50; Boyce and Lewis). With planned obsolescence leading to “dizzying new heights” of product replacement (Rogers 202), there is an overstated sense of the novelty and preeminence of “new” media—a “cult of the present” is particularly dazzled by the spread of electronic gadgets through globalization (Mattelart and Constantinou 22). References to the symbolic power of media technology can be found in hymnals across the internet and the halls of academe: technologies change us, the media will solve social problems or create new ones, ICTs transform work, monopoly ownership no longer matters, journalism is dead, social networking enables social revolution, and the media deliver a cleaner, post-industrial, capitalism. Here is a typical example from the twilight zone of the technological sublime (actually, the OECD): A major feature of the knowledge-based economy is the impact that ICTs have had on industrial structure, with a rapid growth of services and a relative decline of manufacturing. Services are typically less energy intensive and less polluting, so among those countries with a high and increasing share of services, we often see a declining energy intensity of production … with the emergence of the Knowledge Economy ending the old linear relationship between output and energy use (i.e. partially de-coupling growth and energy use) (Houghton 1) This statement mixes half-truths and nonsense. In reality, old-time, toxic manufacturing has moved to the Global South, where it is ascendant; pollution levels are rising worldwide; and energy consumption is accelerating in residential and institutional sectors, due almost entirely to ICT/CE usage, despite advances in energy conservation technology (a neat instance of the age-old Jevons Paradox). In our book we show how these are all outcomes of growth in ICT/CE, the foundation of the so-called knowledge-based economy. ICT/CE are misleadingly presented as having little or no material ecological impact. In the realm of everyday life, the sublime experience of electronic machinery conceals the physical work and material resources that go into them, while the technological sublime makes the idea that more-is-better palatable, axiomatic; even sexy. In this sense, the technological sublime relates to what Marx called “the Fetishism which attaches itself to the products of labour” once they are in the hands of the consumer, who lusts after them as if they were “independent beings” (77). There is a direct but unseen relationship between technology’s symbolic power and the scale of its environmental impact, which the economist Juliet Schor refers to as a “materiality paradox” —the greater the frenzy to buy goods for their transcendent or nonmaterial cultural meaning, the greater the use of material resources (40-41). We wrote Greening the Media knowing that a study of the media’s effect on the environment must work especially hard to break the enchantment that inflames popular and elite passions for media technologies. We understand that the mere mention of the political-economic arrangements that make shiny gadgets possible, or the environmental consequences of their appearance and disappearance, is bad medicine. It’s an unwelcome buzz kill—not a cool way to converse about cool stuff. But we didn’t write the book expecting to win many allies among high-tech enthusiasts and ICT/CE industry leaders. We do not dispute the importance of information and communication media in our lives and modern social systems. We are media people by profession and personal choice, and deeply immersed in the study and use of emerging media technologies. But we think it’s time for a balanced assessment with less hype and more practical understanding of the relationship of media technologies to the biosphere they inhabit. Media consumers, designers, producers, activists, researchers, and policy makers must find new and effective ways to move ICT/CE production and consumption toward ecologically sound practices. In the course of this project, we found in casual conversation, lecture halls, classroom discussions, and correspondence, consistent and increasing concern with the environmental impact of media technology, especially the deleterious effects of e-waste toxins on workers, air, water, and soil. We have learned that the grip of the technological sublime is not ironclad. Its instability provides a point of departure for investigating and criticizing the relationship between the media and the environment. The media are, and have been for a long time, intimate environmental participants. Media technologies are yesterday’s, today’s, and tomorrow’s news, but rarely in the way they should be. The prevailing myth is that the printing press, telegraph, phonograph, photograph, cinema, telephone, wireless radio, television, and internet changed the world without changing the Earth. In reality, each technology has emerged by despoiling ecosystems and exposing workers to harmful environments, a truth obscured by symbolic power and the power of moguls to set the terms by which such technologies are designed and deployed. Those who benefit from ideas of growth, progress, and convergence, who profit from high-tech innovation, monopoly, and state collusion—the military-industrial-entertainment-academic complex and multinational commandants of labor—have for too long ripped off the Earth and workers. As the current celebration of media technology inevitably winds down, perhaps it will become easier to comprehend that digital wonders come at the expense of employees and ecosystems. This will return us to Max Weber’s insistence that we understand technology in a mundane way as a “mode of processing material goods” (27). Further to understanding that ordinariness, we can turn to the pioneering conversation analyst Harvey Sacks, who noted three decades ago “the failures of technocratic dreams [:] that if only we introduced some fantastic new communication machine the world will be transformed.” Such fantasies derived from the very banality of these introductions—that every time they took place, one more “technical apparatus” was simply “being made at home with the rest of our world’ (548). Media studies can join in this repetitive banality. Or it can withdraw the welcome mat for media technologies that despoil the Earth and wreck the lives of those who make them. In our view, it’s time to green the media by greening media studies. References “A Cyber-House Divided.” Economist 4 Sep. 2010: 61-62. “Gartner Estimates ICT Industry Accounts for 2 Percent of Global CO2 Emissions.” Gartner press release. 6 April 2007. ‹http://www.gartner.com/it/page.jsp?id=503867›. Basel Action Network and Silicon Valley Toxics Coalition. Exporting Harm: The High-Tech Trashing of Asia. Seattle: Basel Action Network, 25 Feb. 2002. Benjamin, Walter. “Central Park.” Trans. Lloyd Spencer with Mark Harrington. New German Critique 34 (1985): 32-58. Biagioli, Mario. “Postdisciplinary Liaisons: Science Studies and the Humanities.” Critical Inquiry 35.4 (2009): 816-33. Boyce, Tammy and Justin Lewis, eds. Climate Change and the Media. New York: Peter Lang, 2009. Commission of the European Communities. “Impact Assessment.” Commission Staff Working Paper accompanying the Proposal for a Directive of the European Parliament and of the Council on Waste Electrical and Electronic Equipment (WEEE) (recast). COM (2008) 810 Final. Brussels: Commission of the European Communities, 3 Dec. 2008. Environmental Protection Agency. Management of Electronic Waste in the United States. Washington, DC: EPA, 2007 Environmental Protection Agency. Statistics on the Management of Used and End-of-Life Electronics. Washington, DC: EPA, 2008 Grossman, Elizabeth. Tackling High-Tech Trash: The E-Waste Explosion & What We Can Do about It. New York: Demos, 2008. ‹http://www.demos.org/pubs/e-waste_FINAL.pdf› Herat, Sunil. “Review: Sustainable Management of Electronic Waste (e-Waste).” Clean 35.4 (2007): 305-10. Houghton, J. “ICT and the Environment in Developing Countries: Opportunities and Developments.” Paper prepared for the Organization for Economic Cooperation and Development, 2009. International Telecommunication Union. ICTs for Environment: Guidelines for Developing Countries, with a Focus on Climate Change. Geneva: ICT Applications and Cybersecurity Division Policies and Strategies Department ITU Telecommunication Development Sector, 2008. Malmodin, Jens, Åsa Moberg, Dag Lundén, Göran Finnveden, and Nina Lövehagen. “Greenhouse Gas Emissions and Operational Electricity Use in the ICT and Entertainment & Media Sectors.” Journal of Industrial Ecology 14.5 (2010): 770-90. Marx, Karl. Capital: Vol. 1: A Critical Analysis of Capitalist Production, 3rd ed. Trans. Samuel Moore and Edward Aveling, Ed. Frederick Engels. New York: International Publishers, 1987. Mattelart, Armand and Costas M. Constantinou. “Communications/Excommunications: An Interview with Armand Mattelart.” Trans. Amandine Bled, Jacques Guot, and Costas Constantinou. Review of International Studies 34.1 (2008): 21-42. Mattelart, Armand. “Cómo nació el mito de Internet.” Trans. Yanina Guthman. El mito internet. Ed. Victor Hugo de la Fuente. Santiago: Editorial aún creemos en los sueños, 2002. 25-32. Maxwell, Richard and Toby Miller. Greening the Media. New York: Oxford University Press, 2012. Nye, David E. American Technological Sublime. Cambridge, Mass.: MIT Press, 1994. Nye, David E. Technology Matters: Questions to Live With. Cambridge, Mass.: MIT Press. 2007. Orwell, George. “As I Please.” Tribune. 12 May 1944. Richtel, Matt. “Consumers Hold on to Products Longer.” New York Times: B1, 26 Feb. 2011. Robinson, Brett H. “E-Waste: An Assessment of Global Production and Environmental Impacts.” Science of the Total Environment 408.2 (2009): 183-91. Rogers, Heather. Gone Tomorrow: The Hidden Life of Garbage. New York: New Press, 2005. Sacks, Harvey. Lectures on Conversation. Vols. I and II. Ed. Gail Jefferson. Malden: Blackwell, 1995. Schiller, Herbert I. Information and the Crisis Economy. Norwood: Ablex Publishing, 1984. Schor, Juliet B. Plenitude: The New Economics of True Wealth. New York: Penguin, 2010. Science and Technology Council of the American Academy of Motion Picture Arts and Sciences. The Digital Dilemma: Strategic Issues in Archiving and Accessing Digital Motion Picture Materials. Los Angeles: Academy Imprints, 2007. Weber, Max. “Remarks on Technology and Culture.” Trans. Beatrix Zumsteg and Thomas M. Kemple. Ed. Thomas M. Kemple. Theory, Culture [i] The global recession that began in 2007 has been the main reason for some declines in Global North energy consumption, slower turnover in gadget upgrades, and longer periods of consumer maintenance of electronic goods (Richtel). [ii] The emergence of the technological sublime has been attributed to the Western triumphs in the post-Second World War period, when technological power supposedly supplanted the power of nature to inspire fear and astonishment (Nye Technology Matters 28). Historian Mario Biagioli explains how the sublime permeates everyday life through technoscience: "If around 1950 the popular imaginary placed science close to the military and away from the home, today’s technoscience frames our everyday life at all levels, down to our notion of the self" (818). [iii] This compulsory repetition is seemingly undertaken each time as a novelty, governed by what German cultural critic Walter Benjamin called, in his awkward but occasionally illuminating prose, "the ever-always-the-same" of "mass-production" cloaked in "a hitherto unheard-of significance" (48).
APA, Harvard, Vancouver, ISO, and other styles
14
Hoffman, David, and Emily Beer. "Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?" Voices in Bioethics 9 (December19, 2023). http://dx.doi.org/10.52214/vib.v9i.12079.
Full textAbstract:
Photo ID 129550055 © Katarzyna Bialasiewicz | Dreamstime.com ABSTRACT It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon, and today, about 20 percent of people in the US live in jurisdictions that permit MAiD. The New York State legislature is currently considering a bill that would permit Medical Aid in Dying for terminally ill patients in certain defined circumstances. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions. This demonstrates that legislation can simultaneously grant terminally ill citizens the civil right to access MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. Given the copious evidence gathered in the past decades, concerns about abuse can no longer be credited as grounds for opposing the passage of legislation that is demonstrably both effective and safe. INTRODUCTION It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon,[1] and today, about 20 percent of people in the US live in jurisdictions that permit MAiD.[2] Other jurisdictions, including New York, are actively considering adopting MAiD laws. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions, demonstrating that legislation can permit MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. The data should allay the concerns of those who oppose MAiD due to the risk of abuse, coercion, and a hypothetical slippery slope. We, as a society, as clinicians, and as ethicists, must remain vigilant and prevent abuse of MAiD, given the potential risks in the community and in congregate care settings and the risk of patient exploitation by family members. However, given the copious evidence, concerns about abuse do not justify opposition to legislation that is effective and safe. I. New York’s MAiD Bill The New York State legislature is currently considering a bill that would permit MAiD for terminally ill patients in defined circumstances.[3] The bill applies only to adults with a terminal illness or condition that is “incurable and irreversible” and “will, within reasonable medical judgment, produce death within six months.” The bill contains numerous protective requirements: MAiD requests can only be made by the patient themself; requests cannot be made by healthcare agents, surrogates, or anyone else; MAiD requests must be made both orally and in writing to the patient’s attending physician; No person is eligible for MAiD solely because of age or disability; The patient’s attending physician must determine the patient has a qualifying terminal illness, has decision-making capacity, and has made a voluntary, informed decision to request MAiD, in the absence of coercion; These determinations must be confirmed by a second consulting physician in writing; If the attending physician has any concern that the patient may not have decision-making capacity, the patient must be referred to a mental health professional; The attending physician has additional duties to the patient, including ensuring the decision is informed, by discussing the patient’s condition and prognosis; discussing the MAiD process, and treatment alternatives like palliative and hospice care; offering referrals to other appropriate treatment, like palliative and hospice care; and educating the patient that their request can be rescinded at any time and offering them an opportunity to do so; The written request must be witnessed by at least two adults who cannot be (i) related to the patient, (ii) entitled to any portion of the patient’s estate, (iii) employed by a healthcare facility where the patient is receiving treatment or residing, (iv) or the attending physician, consulting physician, or mental health professional determining decision-making capacity; and MAiD medication must be self-administered by the patient, and it must be voluntarily ingested.[4] ARGUMENTS FOR AND AGAINST MAiD II. No Evidence of Abuse of Existing MAiD Laws MAiD supporters and critics alike have a concern about the abuse of MAiD. For this reason, MAiD laws throughout the US incorporate strict eligibility criteria and protective procedural requirements. For instance, patients are eligible only if they are terminally ill with six months or less to live, more than one physician must be involved, and requests must be witnessed (by individuals unrelated to the patient who will not profit from the patient’s estate). MAiD requests have been closely examined in the 27 years since Oregon became the first state to legalize the practice. The results show that these compassionate and protective measures have worked. There have been no documented or substantiated incidents of MAiD abuse since Oregon became the first to implement a MAiD law in 1997.[5] In 2019, the executive director of Disability Rights Oregon (DRO), an organization mandated by federal law to investigate complaints of abuse or neglect of people with disabilities, reported that DRO has never received a complaint that a person with disabilities was coerced into obtaining a prescription for MAiD drugs.[6] A recent study of aggregated data from all nine of the US jurisdictions with publicly available MAiD records from 1998 to 2002 found that 95.6 percent of those who died by MAiD were non-Hispanic white individuals, and 53.1 percent were male.[7] 72.2 percent of these individuals had at least some college education, 74 percent had a cancer diagnosis, and the median age of MAiD death was 74 years old. Only 11 percent of patients were uninsured. MAiD users tend to be white, older, educated, diagnosed with cancer, and insured. Fears that MAiD would overwhelmingly be used by (or on) the poor, the uninsured, the uneducated, or racial and ethnic minorities have not materialized. This data has actually raised a converse concern: that MAiD may, inequitably, not be readily available to less privileged populations or those with a diagnosis other than cancer.[8] Opponents of MAiD may argue that the recent relaxation of certain legal restrictions in some jurisdictions is evidence that the slippery slope to unrestricted euthanasia has begun. This is a mischaracterization. Certain restrictions have been adjusted. For instance, Oregon and Vermont removed the residency restriction that previously excluded non-residents from eligibility.[9] Both states changed the residency requirement due to lawsuits challenging the constitutionality of requiring residence.[10] New Jersey’s law will likely change soon, as well.[11] Initial MAiD laws were drafted to be highly restrictive out of concern about unintended and unforeseeable consequences. Given the gravity of the subject, decades ago, it was better to err on the side of caution, even if that meant excluding from eligibility people who ought to, ethically or legally, be included. Now, with nearly 30 years of experience and data, we can better determine which requirements are necessary to appropriately protect patients, clinicians, and society. Restrictions proven to be unnecessary can now be modified. The core purposes of MAiD laws and the rights and protections they provide are not changing. Rather, a few aspects of the regulations are being adjusted so they are not more restrictive than necessary to achieve their purpose. The ever-growing body of evidence that MAiD laws can adequately protect against abuse and the mythic slippery slope has assured many that their fears will not materialize.[12] For example, NYU bioethicist Arthur Caplan was once a vigorous opponent of MAiD. He worried that MAiD laws would lead to the abuse of the poor, uninsured, and disabled in service of cost-saving or the convenience of others. [13] But, after closely following the empirical evidence from MAiD early-adopters, Oregon and Washington, Caplan changed his mind. In 2018, he argued in favor of the NY MAiD bill before the New York State Assembly Standing Committee on Health.[14] Discussing his review of evidence from these states, Caplan stated: I found no cause for my concerns, none with respect to the slippery slope. There isn’t solid evidence of coercion or duplicity being exercised with respect to people who choose assistance in dying in either state. The police, government officials, families of those who have chosen to use the legislation and the general citizenry find no causes or basis for changing the laws due to abuse or misapplication . . . These slippery slope arguments are just not true . . . there is no current factual support for this slippery slope argument that vulnerable individuals are at risk for being coerced into using the law.[15] Decades of evidence has shown that legislation can simultaneously grant terminally ill patients access to MAiD while also protecting against coercion and abuse. In the face of this evidence, continuing to deny access to MAiD because of hypothetical abuse is unjust and unethical. III. Views of Opponents are Neither Grounded in Fact nor Consistent with Current End-of-Life Practices a. Risk of coercion One common argument heard today from some disability advocates who oppose MAiD goes something like this: Everybody who would qualify for and use MAiD is (or will become) a disabled person, so MAiD only kills people with disabilities. The most common reasons people choose to end their lives via MAiD are disability issues, like loss of autonomy, less ability to engage in activities, and loss of dignity. They argue that, instead of making it easier for disabled people to die, we should make sure that proper services and support exist so that disabled people do not choose to die. Such disability-rights-based arguments tend to assert that to avoid abuse, we must prohibit MAiD altogether. They argue that legalizing MAiD will inexorably lead to abuse and coercion, and disabled people will be pressured into suicide. Some even argue that MAiD laws are the first step to euthanasia, noting the path in other jurisdictions.[16] As an initial matter, people with disabilities deserve adequate support and services, and these are not always available to them. People with disabilities have faced tremendous discrimination in the healthcare system and have been historically prevented from accessing proper care and asserting their autonomy. Ensuring that all can access adequate end-of-life care, like palliative or hospice care, is an ongoing battle that ought not be abandoned. But fighting for adequate end-of-life care and legalizing MAiD are not mutually exclusive. In Oregon, 90 percent of those who access MAiD are enrolled in hospice and states with MAiD laws tend to have better access to palliative care than states without.[17] MAiD proponents seek only to add another choice for the dying, not to diminish any other options. This is reflected in the text of New York’s pending bill, which explicitly requires patient education and referrals to appropriate end-of-life services, like palliative care and hospice.[18] No one has openly argued that society should hold terminally ill patients hostage in order to obtain broader support and funding for palliative care, but that is the practical effect. Beyond the need for supportive services and proper access to the full range of end-of-life care options, the disability argument fails. First, the assertion that MAiD laws will be abused and disabled people will be coerced into suicide is not grounded in fact. To the contrary, real-life evidence gathered in over two decades of legal MAiD has shown no documented or substantiated incidents of abuse, as discussed above.[19] The slippery slope has simply not materialized. Advocates for people with disabilities who are opposed to MAiD have not clearly articulated exactly who is vulnerable to being coerced into obtaining a MAiD prescription or even how such coercion could logistically occur. Most people with disabilities are not vulnerable to MAiD abuse, as they do not have a qualifying terminal illness or lack decisional capacity due to a developmental disability and are therefore not eligible. MAiD opponents appear to be claiming that all those who qualify for MAiD are vulnerable and seek protection from MAiD laws. But this would include many of the people that, over the past decades, have aggressively and publicly advocated for access to MAiD – terminally ill people, like Brittany Maynard,[20] many of whom lobbied hard for the passage of MAiD laws while knowing that they themselves would die before the laws passed. Opponents of MAiD from a segment of the disability rights community are telling individuals who they claim, without permission, as members of the MAiD opposition community, that they must all endure unimaginable suffering without a MAiD option because they must be protected from theoretical coercive harm. People with disabilities should be allowed to make their own choices. No one, not even the most well-meaning advocate, should be allowed to obstruct a patient’s end-of-life choices – those choices belong to the patient alone. b. Argument That the Demand for MAID is a Result of Poor Disability Services Second, the argument that terminally ill patients would decline MAiD if only they had better disability services or support is disingenuous to the extent that it ignores the fact that people choosing MAiD are actively dying. No provision of supportive services can change this. And it is perfectly reasonable for someone who knows that they will die in less than six months to want some control over the manner of their death and to avoid the deterioration, indignity, and suffering that could come with it. The argument construes a MAiD death as a choice to die rather than live with a disability. But individuals choosing MAiD are not choosing death – death is coming and coming quickly. MAiD simply offers some control over this reality, giving patients an option that is safe, certain, and painless. Certainly, supportive hospice services should be available for these individuals. But there is no evidence demonstrating that any amount of service would eliminate the need and desire for the MAiD option. c. Inconsistent Positions on MAID and Other Ending Life Care Options: Palliative Sedation and VSED MAiD opponents who are concerned about abuse and coercion often hold inconsistent views on other currently available ending life care options.[21] For example, some argue that palliative sedation[22] renders MAiD unnecessary and does not present the same ethical problems.[23] However, whereas MAiD can only be chosen by the patient themself (and the patient must have decision-making capacity), the same is not true for palliative sedation. Palliative sedation, a valuable modality of end-of-life care, does not have to be initiated by the patient. If the patient is deemed not to have decision-making capacity to make that decision, their healthcare proxy can decide to initiate the process and continue it until the patient dies. Individuals other than patients often choose to begin palliative sedation and continue it to its inevitable conclusion. And because palliative sedation does not require enabling legislation, none of the protective safeguards incorporated in MAiD legislation are available to protect those who receive palliative sedation. Some may try to differentiate between palliative sedation and MAiD by saying that once started, palliative sedation can always be discontinued – it need not end in the patient’s death. This is true, but the very process of palliative sedation will inevitably make the patient insensible or unconscious or otherwise unable to exercise a choice to stop sedation. With MAiD, the patient must self-administer and ingest the medication on their own, with death following quickly. The patient can choose to forgo MAID up until the very moment of self-administration. Considering MAiD’s procedural safeguards, including that only the patient may choose and administer MAiD, MAiD patients are offered more protection from potential abuse than patients who receive palliative sedation. While some have vocally opposed MAiD for decades, there has not been similar opposition to the option of voluntarily stopping eating and drinking (VSED). With VSED, adults with decision-making capacity make a voluntary decision to refuse nutrition and hydration to die more quickly. People choosing VSED are, essentially, making the same choice that people choosing MAiD do. But VSED is a less predictable process that takes much longer to complete. Unfortunately, the process also carries a risk of unpleasant side-effects, though proper care can help mitigate them. Additionally, the practice of VSED is not constrained by statutorily defined protective measures, as is the case with MAiD – one does not even need to have a terminal illness to choose VSED.[24] It is logically inconsistent for those who oppose MAiD because of the perceived potential of abuse to hold different views about VSED.[25] If malevolent actors can unethically pressure or coerce patients into MAiD, they can also coerce them to stop eating and drinking. As with palliative sedation, it could be argued that an important difference is that VSED can be stopped, unlike MAiD. This argument fails clinically and ethically. As with palliative sedation, the VSED process eventually results in the patient losing consciousness and decision-making capacity. The patient generally becomes unarousable for a period that could last for days or even weeks. For this reason, it is crucial for VSED patients to express their choice in writing (or preferably in video recording)[26] to ensure that they will not be given nutrition or hydration when they are no longer able to enforce their refusal (or if they begin asking for nutrition or hydration). Therefore, there is a period in which the patient cannot decide to end the process, just as with palliative sedation. To the extent that someone is so concerned with potential abuse of MAiD that they seek to ban it but have not expressed similar concerns with VSED, these positions are inconsistent. At a NYS Bar Association-sponsored conference on MAiD in 2019, David Hoffman asked a MAiD opponent whether, “as someone who is looking out for the interests of a segment of the disability population,” she supports palliative sedation and VSED.”[27] Kathryn Carroll, who represented the Center for Disability Rights (“CDR”), confirmed that CDR did not oppose palliative sedation and did not offer a position on VSED. She noted the subtle difference in intention: I don’t believe the Center for Disability Rights has taken issue with palliative sedation. And my understanding is that there is a key difference between palliative sedation and assisted suicide, particularly in that palliative sedation, the point is not to bring about the death of the person, but to relieve the pain that they are experiencing. And so the death is more of a side effect rather than the intended outcome.[28] During the questioning, she provided no explanation as to why the potential for abuse would be different among palliative sedation, VSED, and MAiD.[29] The other MAiD opponent on the panel, Dennis Vacco, of Vacco v. Quill[30] fame, interjected but could not explain any ethically significant difference between VSED and MAiD. Instead, he focused solely on palliative sedation, stating that the relevant difference is that palliative sedation can be stopped: . . . treating the pain including what you referred to as terminal sedation, is not moral and legally and ethnically the same as physician-assisted suicide . . . The fact of the matter is – the difference is you can terminate that treatment, and it’s the permanent aspect of physician-assisted suicide that goes back to what I said 20 minutes ago. You can’t put the bright line anyplace else other than where it is.[31] But, as discussed above, that difference is of little import, given that palliative sedation results in patients without the ability or capacity to make the choice to stop treatment. Vacco then reverted to his concerns about the potential for coercion and the elusive slippery slope, referencing his primary argument that the only way to ensure there is no abuse of a MAiD law is not to have one at all: The bright line that is created by the law in the state of New York, which makes physician-assisted suicide a manslaughter in the second-degree, or assisting suicide by anybody, manslaughter in the second degree . . . is unfortunately the only place that line can be. That line should not move further toward accommodation. And we see here in the context of . . . all of the so-called protections in the statute. With every protection that is not prohibition, with every protection, you raise the possibility of abuse. You raise the possibility with every protection.[32] Neither Vacco nor Carroll addressed the fact that many common practices today can be the result of coerced decisions. These practices have none of the safeguards contained in MAiD legislation. As another panelist, David Leven, stated: consider that people who want to have life-sustaining treatment withdrawn, whether it’s a ventilator or feeding tube, they can also be coerced by family members. That can happen even more often, of course, because that process takes place more and more often, and there are none of the safeguards that we’re talking about here . . . there are risks involved in any process which might result in a hastened death. But there seems to be very little risk involved with medical aid in dying based on the experience in 40 years and the nine states which now permit medical aid in dying.[33] There is an inescapable inconsistency within the disability argument: one cannot logically be so concerned about the abuse of legalized access to MAiD to justify opposing all MAiD legislation while simultaneously supporting options like palliative sedation or VSED as abuse-free alternatives. d. Argument Against Speaking for a Community with Diverse Views Finally, while some disability advocates opposing MAiD will claim terminally ill patients as part of their community, they have no right or authorization to speak for the extremely heterogeneous group of terminally ill patients or the disability community[34] as a whole. The disability community is not homogenous; while some members oppose MAiD, others support it.[35] Recent polling indicates that MAiD may have broad support across the disability community.[36] e. MAiD Opponents Hold the Rights of the Terminally Ill Subordinate to Their Personal Morality and Unsubstantiated Theoretical Concerns The argument that does not get much attention, the one that is the simplest and perhaps even the most compelling, is that all killing is wrong, and the government ought not to be in the business of enabling it. That is certainly a compelling religious and moral argument against individuals engaging in any form of acts that result in ending a human life. But such an ethical or theological position does not dictate that individuals who hold different views on personal morality should be precluded by the state from accessing the most safe, certain, and painless means of addressing an invariably terminal illness. Arguments like the one described above by Vacco (that the only way to completely avoid potential MAiD abuse is to prohibit MAiD) are essentially claiming that the safest thing to do is to subordinate the suffering of the terminally ill to avoid the more subtle task of balancing the interests of two different groups of New York state citizens. But surely, that is the role of the legislature every day. And we should expect no less from the legislature on this issue. The best way to ensure no one dies in car accidents is to prohibit driving. But instead of doing so, we implement safety regulations (like speed limits) to balance the right to travel with the right of everyone else not to be killed in the process. Evidence demonstrates that MAiD legislation can also strike a balance between the rights of the terminally ill and the need to prevent harm. It is not justifiable to support a blanket prohibition of MAiD. CONCLUSION Opponents of MAiD have had decades to cite problematic case studies or formulate a compelling moral argument against it that is grounded in data rather than an assertion of their personal morality. Plainly, no one on either side of the MAiD legislative discussion wants to see anyone subjected to involuntary euthanasia or coerced into MAiD as a better alternative to palliative care when such a plan of care is a viable alternative to “ending life care.” However, enough time has passed, and the risk of coercion has been given sufficient study and debate that we can now conclude, as a society, that the rights of the terminally ill and the rights of persons committed to living their best and longest life with a disability are wholly compatible. It is time for the legislature to strike the appropriate balance and give the terminally ill a well-regulated, responsible pathway to obtaining medication that can relieve their suffering in a manner that is safe, certain, and painless. - [1] Oregon’s Death with Dignity Act, Oregon Health Authority, https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/index.aspx [2] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [3] Medical Aid in Dying Act, A.995-A, N.Y. St. Assemb. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A; see also, Medical Aid in Dying Act, S.2445-A, N.Y. St. Senate (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/S2445A. [4] Id. [5] Ronald A. Lindsay, Oregon’s Experience: Evaluating the Record, 9 The American Journal of Bioethics 19 (2009), https://doi.org/10.1080/15265160802654137; Christopher A. Riddle, Medical Aid in Dying: The Case of Disability, in New Directions in the Ethics of Assisted Suicide and Euthanasia 234 (Michael Cholbi & Jukka Varelius eds., 2nd ed. 2023), https://doi.org/10.1007/978-3-031-25315-7; Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY ST. BAR ASSOC. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/; Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1; Fact: Medical Aid in Dying Laws Work to Protect Patients. (n.d.). Compassion & Choices. Retrieved September 5, 2023, from https://compassionandchoices.org/resource/fact-medical-aid-in-dying-laws-work-to-protect-patients; Frequently Asked Questions. (2021, December 7). Death With Dignity. https://deathwithdignity.org/resources/faqs/. [6] Bob Joondeph, Letter from Disability Rights Oregon (DRO), Compassion & Choices (Feb. 14, 2019), https://www.compassionandchoices.org/docs/default-source/default-document-library/disability-rights-oregon-dwd-letter-2-14-19.pdf. [7] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [8] Id. [9] Medical Aid in Dying: Act 39: Patient Choice and Control at the End of Life, Vermont Ethics Network, https://vtethicsnetwork.org/palliative-and-end-of-life-care/medical-aid-in-dying-act-39 (last visited Sept. 21, 2023). [10] Gideonse v. Brown, No. 3:21-cv-01568-AC (D. Or.); Bluestein v. Scott, No. 2:22-cv-00160 (D. Vt.). [11] Govatos v. Murphy, No. 2:23-cv-12601(D.N.J.). [12] Medical associations, historically opponents of MAiD, have begun adopting neutral positions, reflecting changing attitudes of the medical community. E.g., California Medical Association removes opposition to physician aid in dying bill, California Medical Association (May 20, 2015), https://www.cmadocs.org/newsroom/news/view/ArticleId/27210/California-Medical-Association-removes-opposition-to-physician-aid-in-dying-bill; Board directs CMS to develop and distribute “End-of-Life Act” education to members, Colorado Medical Society (November 22, 2016), https://www.cms.org/articles/board-directs-cms-to-develop-and-distribute-end-of-life-act-education-to-me; Vermont Medical Society Policy on End-of-life-Care, Vermont Medical Society (2017), https://vtmd.org/client_media/files/vms_resolutions/2017End-of-Life-Care.pdf (last accessed Sept. 21, 2023); but see Physician-Assisted Suicide, AMA Code of Ethics, https://code-medical-ethics.ama-assn.org/ethics-opinions/physician-assisted-suicide. (5.7 provides opinion opposing MAiD; opinion 1.1.7 provides opinion on conscientious objection.); The American Medical Association could vote to change its stance on medical aid in dying, Death with Dignity (Nov. 10, 2023), https://deathwithdignity.org/news/2023/11/ama-could-vote-to-change-stance-on-maid/ (Update notes that the AMA did not change its stance from opposed to neutral at its November 2023 interim meeting in Baltimore, but referred the resolutions for further study). [13] Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1. [14] Id. [15] Id. [16] Id. (noting the laws in Netherlands, Belgium and Canada.); see also National Council on Disability, The danger of assisted suicide laws: Part of the Bioethics and Disability series (2019). https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508.pdf. [17] Sean Riley & Ben Sarbey, The unexamined benefits of the expansive legalization of medical assistance-in-dying, 19 J. Bioethical Inquiry 4, 663 (2022) (citing Oregon Health Authority Center for Health Statistics, Oregon Death with Dignity Act: 2018 Data Summary (2019), https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year21.pdf and R. Sean Morrison, et al., America’s care of serious illness: A state-by-state report card on access to palliative care in our nation’s hospitals, 14 J. Palliat. Med. 10, 1094–1096 (2011)). [18] Medical Aid in Dying Act, A.995-A, N.Y. St. Assembly. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A [19] See also, Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (cataloging research in multiple countries and concluding that “there is no evidence that assisted dying laws have a disproportionate effect on people with disabilities”). https://doi.org/10.1111/bioe.13036 [20] Eyder Peralta, As Planned, Right-To-Die Advocate Brittany Maynard Ends Her Life, NPR (Apr. 3, 2014), https://www.npr.org/sections/thetwo-way/2014/11/03/361094919/as-planned-right-to-die-advocate-brittany-maynard-ends-her-life (Activist Brittany Maynard moved to Oregon after she was diagnosed with a malignant brain tumor, because her home state did not permit MAiD at the time). [21] Ending life care is defined as the final stage of the end-of-life care continuum, where the patient chooses to end their life as a means to end their suffering or unacceptable quality of life. [22] Palliative sedation is defined as “the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life,” and it carries a risk of hastening death. Molly L. Olsen, Keith M. Swetz & Paul S. Mueller, Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments, 85 Mayo Clin Proc 949 (2010). https://doi.org/10.4065/mcp.2010.0201 [23] E.g. Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide, Not Dead Yet, https://notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide (last visited Dec. 8, 2023) (describing palliative sedation as “a legal solution to any remaining painful and uncomfortable deaths; one that does not raise the very serious hazards of legalizing assisted suicide”); Testimony of CDR’s Kathryn Carroll, Esq. Opposing NY Assisted Suicide Bill A2383A, Not Dead Yet (Apr. 23, 2018), https://notdeadyet.org/testimony-of-cdrs-kathryn-carroll-esq-opposing-ny-assisted-suicide-bill-a2383a. [24] Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [25] This is not to say that MAiD and VSED are ethically identical. Different writers have articulated various reasons why MAiD and VSED are meaningfully different and meaningfully similar. Here we distinguish the potential for abuse, as this is the argument that persists among MAiD opponents, For a broader discussion on the ethics of VSED and how it compares to MAiD, see Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [26] Id.; see also David N. Hoffman and Judy Schwarz, Can Patients Choose to Stop Eating–Even If They Have Dementia–and Can Health Care Facilities Get Paid for Taking Care of Them? Ethics and Reimbursement at the End of Life (Am. Health L. Ass’n Conf. on Long Term Care and the Law 2020). [27] Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY St. Bar Assoc. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/. [28] Id. [29] CDR still does not appear to have articulated a position on VSED. CDR is a major and vocal opponent of MAiD legislation in NY with considerable resources (they state their projected 2010 budget was approximately $29,000,000). About Us, Center for Disability Rights, https://cdrnys.org/about/. [30] Vacco v. Quill, 521 U.S. 793 (1997) (holding that there is no equal protection violation when N.Y. law criminalized assisted-suicide but permitted removal of life-support systems). [31] Health Law Section: Duties, Rights & the Law at the End of Life (2019), supra note 5. [32] Id. [33] Id. [34] Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (providing evidence that “that people with disabilities, and disability rights organizations, have diverse views on the question of whether assisted dying should be legal”). https://doi.org/10.1111/bioe.13036 [35] Us for Autonomy, https://www.usforautonomy.org (last visited Sep 10, 2023); see also, Kathryn L. Tucker, Building Bridges Between the Civil Rights Movements of People with Disabilities and Those with Terminal Illness, 78 U. of Pitt. L. Rev. 329 (2017) (collecting and describing amici participation by disability advocates supporting end-of-life liberty). https://doi.org/10.5195/lawreview.2017.473 [36] E.g., USA/National Public Opinion Survey, Susquehanna Polling & Research, Inc. (Feb. 2023),https://d31hzlhk6di2h5.cloudfront.net/20230307/2e/9e/21/14/d37db7887f3f349202ae6f31/Raben_Crosstabulation_Report_2023.FINAL%20(1).pdf ).
APA, Harvard, Vancouver, ISO, and other styles
15
Bowers, Olivia, and Mifrah Hayath. "Cultural Relativity and Acceptance of Embryonic Stem Cell Research." Voices in Bioethics 10 (May16, 2024). http://dx.doi.org/10.52214/vib.v10i.12685.
Full textAbstract:
Photo ID 158378414 © Eduard Muzhevskyi | Dreamstime.com ABSTRACT There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities. INTRODUCTION Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve. BACKGROUND Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes.[1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research.[2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.”[3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops.[4] Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture. I. Global Cultural Perspective of Embryonic Stem Cells Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense,[5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research.[6] Consequently, global engagement in ESC research depends on social-cultural acceptability. a. US and Rights-Based Cultures In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism,[7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.”[8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed.[9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field.[10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture.[11] b. Ubuntu and Collective Cultures African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama, which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,”[12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth.[13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value.[14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society. Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.”[15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail. Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable.[16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus[17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines.[18] Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim.[19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research.[20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF. Their use is conditioned on consent, and available only to married couples.[21] The community's receptiveness to stem cell research depends on including communitarian African ethics. c. Asia Some Asian countries also have a collective model of ethics and decision making.[22] In China, the ethics model promotes a sincere respect for life or human dignity,[23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life.[25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research.[26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions.[27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency.[28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021.[29] However, issues still need to be addressed in implementing effective IRB review and approval procedures. The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy,[30] research ethics should also adapt to ensure respect for the values of its represented peoples. Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies.[31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells.[32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval,[33] and in another instance, the oocyte source was unclear and possibly violated ethical standards.[34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust. d. Middle East Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells,[35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research.[36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors.[37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so.[38] Jordan has a positive research ethics culture.[39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial.[40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation.[41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.”[42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes. e. Europe In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected.[43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44] For example, in Germany, Lebenzusammenhang, or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.”[45] Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount.[46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007.[47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization.[48] Spain’s approach differs still, with a comprehensive regulatory framework.[49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility.[50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices.[51] II. Religious Perspectives on ESC Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives. The Qur'an states: “And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.”[52] Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception.[53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible.[54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research.[55] In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided.[56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden.[57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all.[58] Acceptance varies on applied beliefs and interpretations. Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero,[59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all.[60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime.[61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit.[62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets.[63] Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life.[64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception:[65] “If she is found pregnant, until the fortieth day it is mere fluid,”[66] Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation.[67] Stem cell research is accepted due to application of these religious laws. We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory, which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions.[68] We only wish to show that the interaction with morality varies between cultures and countries. III. A Flexible Ethical Approach The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities. While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe.[69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation. For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent.[70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context,[71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders. This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research. Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values.[72] An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions.[73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion. IV. Concerns Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values.[74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions. Other concerns include medical tourism, which may promote health inequities.[75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments.[76] For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.”[77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices.[78] The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.”[79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds.[80] CONCLUSION While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research. For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society. This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model. - [1] Poliwoda, S., Noor, N., Downs, E., Schaaf, A., Cantwell, A., Ganti, L., Kaye, A. D., Mosel, L. I., Carroll, C. B., Viswanath, O., & Urits, I. (2022). Stem cells: a comprehensive review of origins and emerging clinical roles in medical practice. Orthopedic reviews, 14(3), 37498. https://doi.org/10.52965/001c.37498 [2] Poliwoda, S., Noor, N., Downs, E., Schaaf, A., Cantwell, A., Ganti, L., Kaye, A. D., Mosel, L. I., Carroll, C. B., Viswanath, O., & Urits, I. (2022). Stem cells: a comprehensive review of origins and emerging clinical roles in medical practice. Orthopedic reviews, 14(3), 37498. https://doi.org/10.52965/001c.37498 [3] International Society for Stem Cell Research. (2023). Laboratory-based human embryonic stem cell research, embryo research, and related research activities. International Society for Stem Cell Research. https://www.isscr.org/guidelines/blog-post-title-one-ed2td-6fcdk; Kimmelman, J., Hyun, I., Benvenisty, N. et al. Policy: Global standards for stem-cell research. Nature 533, 311–313 (2016). https://doi.org/10.1038/533311a [4] International Society for Stem Cell Research. (2023). Laboratory-based human embryonic stem cell research, embryo research, and related research activities. International Society for Stem Cell Research. https://www.isscr.org/guidelines/blog-post-title-one-ed2td-6fcdk [5] Concerning the moral philosophies of stem cell research, our paper does not posit a personal moral stance nor delve into the “when” of human life begins. To read further about the philosophical debate, consider the following sources: Sandel M. J. (2004). Embryo ethics--the moral logic of stem-cell research. The New England journal of medicine, 351(3), 207–209. https://doi.org/10.1056/NEJMp048145; George, R. P., & Lee, P. (2020, September 26). Acorns and Embryos. The New Atlantis. https://www.thenewatlantis.com/publications/acorns-and-embryos; Sagan, A., & Singer, P. (2007). The moral status of stem cells. Metaphilosophy, 38(2/3), 264–284. http://www.jstor.org/stable/24439776; McHugh P. R. (2004). Zygote and "clonote"--the ethical use of embryonic stem cells. The New England journal of medicine, 351(3), 209–211. https://doi.org/10.1056/NEJMp048147; Kurjak, A., & Tripalo, A. (2004). The facts and doubts about beginning of the human life and personality. Bosnian journal of basic medical sciences, 4(1), 5–14. https://doi.org/10.17305/bjbms.2004.3453 [6] Vazin, T., & Freed, W. J. (2010). Human embryonic stem cells: derivation, culture, and differentiation: a review. Restorative neurology and neuroscience, 28(4), 589–603. https://doi.org/10.3233/RNN-2010-0543 [7] Socially, at its core, the Western approach to ethics is widely principle-based, autonomy being one of the key factors to ensure a fundamental respect for persons within research. For information regarding autonomy in research, see: Department of Health, Education, and Welfare, & National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978). The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research.; For a more in-depth review of autonomy within the US, see: Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics. Oxford University Press. [8] Sherley v. Sebelius, 644 F.3d 388 (D.C. Cir. 2011), citing 45 C.F.R. 46.204(b) and [42 U.S.C. § 289g(b)]. https://www.cadc.uscourts.gov/internet/opinions.nsf/6c690438a9b43dd685257a64004ebf99/$file/11-5241-1391178.pdf [9] Stem Cell Research Enhancement Act of 2005, H. R. 810, 109th Cong. (2001). https://www.govtrack.us/congress/bills/109/hr810/text; Bush, G. W. (2006, July 19). Message to the House of Representatives. National Archives and Records Administration. https://georgewbush-whitehouse.archives.gov/news/releases/2006/07/20060719-5.html [10] National Archives and Records Administration. (2009, March 9). Executive order 13505 -- removing barriers to responsible scientific research involving human stem cells. National Archives and Records Administration. https://obamawhitehouse.archives.gov/the-press-office/removing-barriers-responsible-scientific-research-involving-human-stem-cells [11] Hurlbut, W. B. (2006). Science, Religion, and the Politics of Stem Cells. Social Research, 73(3), 819–834. http://www.jstor.org/stable/40971854 [12] Akpa-Inyang, Francis & Chima, Sylvester. (2021). South African traditional values and beliefs regarding informed consent and limitations of the principle of respect for autonomy in African communities: a cross-cultural qualitative study. BMC Medical Ethics. 22. 10.1186/s12910-021-00678-4. [13] Source for further reading: Tangwa G. B. (2007). Moral status of embryonic stem cells: perspective of an African villager. Bioethics, 21(8), 449–457. https://doi.org/10.1111/j.1467-8519.2007.00582.x , see also Mnisi, F. M. (2020). An African analysis based on ethics of Ubuntu - are human embryonic stem cell patents morally justifiable? African Insight, 49(4). [14] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324 [15] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324 [16] Jackson, C.S., Pepper, M.S. Opportunities and barriers to establishing a cell therapy programme in South Africa. Stem Cell Res Ther 4, 54 (2013). https://doi.org/10.1186/scrt204; Pew Research Center. (2014, May 1). Public health a major priority in African nations. Pew Research Center’s Global Attitudes Project. https://www.pewresearch.org/global/2014/05/01/public-health-a-major-priority-in-african-nations/ [17] Department of Health Republic of South Africa. (2021). Health Research Priorities (revised) for South Africa 2021-2024. National Health Research Strategy. https://www.health.gov.za/wp-content/uploads/2022/05/National-Health-Research-Priorities-2021-2024.pdf [18] Oosthuizen, H. (2013). Legal and Ethical Issues in Stem Cell Research in South Africa. In: Beran, R. (eds) Legal and Forensic Medicine. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32338-6_80, see also: Gaobotse G (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142 [19] United States Bureau of Citizenship and Immigration Services. (1998). Tunisia: Information on the status of Christian conversions in Tunisia. UNHCR Web Archive. https://webarchive.archive.unhcr.org/20230522142618/https://www.refworld.org/docid/3df0be9a2.html [20] Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142 [21] Kooli, C. Review of assisted reproduction techniques, laws, and regulations in Muslim countries. Middle East Fertil Soc J 24, 8 (2020). https://doi.org/10.1186/s43043-019-0011-0; Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142 [22] Pang M. C. (1999). Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Journal of medical ethics, 25(3), 247–253. https://doi.org/10.1136/jme.25.3.247 [23] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences, 8(1). https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199 [24] Wang, Y., Xue, Y., & Guo, H. D. (2022). Intervention effects of traditional Chinese medicine on stem cell therapy of myocardial infarction. Frontiers in pharmacology, 13, 1013740. https://doi.org/10.3389/fphar.2022.1013740 [25] Li, X.-T., & Zhao, J. (2012). Chapter 4: An Approach to the Nature of Qi in TCM- Qi and Bioenergy. In Recent Advances in Theories and Practice of Chinese Medicine (p. 79). InTech. [26] Luo, D., Xu, Z., Wang, Z., & Ran, W. (2021). China's Stem Cell Research and Knowledge Levels of Medical Practitioners and Students. Stem cells international, 2021, 6667743. https://doi.org/10.1155/2021/6667743 [27] Luo, D., Xu, Z., Wang, Z., & Ran, W. (2021). China's Stem Cell Research and Knowledge Levels of Medical Practitioners and Students. Stem cells international, 2021, 6667743. https://doi.org/10.1155/2021/6667743 [28] Zhang, J. Y. (2017). Lost in translation? accountability and governance of Clinical Stem Cell Research in China. Regenerative Medicine, 12(6), 647–656. https://doi.org/10.2217/rme-2017-0035 [29] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences, 8(1). https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199 [30] Chen, H., Wei, T., Wang, H. et al. Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017. BMC Public Health 22, 434 (2022). https://doi.org/10.1186/s12889-022-12839-0 [31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan. Curr Stem Cell Rep 1, 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6 [32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production. NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production [33] Park, S. (2012). South Korea steps up stem-cell work. Nature. https://doi.org/10.1038/nature.2012.10565 [34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned. Accountability in research, 13(1), 101–109. https://doi.org/10.1080/08989620600634193. [35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 [36]Association for the Advancement of Blood and Biotherapies. https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia [37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 [38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics, 23(3), 260–268. https://doi.org/10.1111/dewb.12355; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know. Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know [39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics. Research Ethics, 17(2), 228-241. https://doi.org/10.1177/1747016120966779 [40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics. Research Ethics, 17(2), 228-241. https://doi.org/10.1177/1747016120966779 [41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3 [44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France. Biotechnology Law Report, 32(6), 349–356. https://doi.org/10.1089/blr.2013.9865 [45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3 [46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf [47] Regulation of Stem Cell Research in Germany. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany [48] Regulation of Stem Cell Research in Finland. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland [49] Regulation of Stem Cell Research in Spain. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain [50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered: Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110. Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ... Revista do Colegio Brasileiro de Cirurgioes, 41(5), 374–377. https://doi.org/10.1590/0100-69912014005013 Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India. Routledge. For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe [51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights. Cultura (Iasi, Romania), 14(2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent? Research Ethics, 13(1), 23-41. https://doi.org/10.1177/1747016116650235 [52] The Qur'an (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23 [53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life. Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/ [54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics, 31:399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386 [55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association, 12(4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf. [56] Sivaraman, M. & Noor, S. (2017). Ethics of embryonic stem cell research according to Buddhist, Hindu, Catholic, and Islamic religions: perspective from Malaysia. Asian Biomedicine,8(1) 43-52. https://doi.org/10.5372/1905-7415.0801.260 [57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation. Journal of Religion and Health, 30(1), 35–41. http://www.jstor.org/stable/27510629; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva. A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm [59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. ((King James Bible. (1999). Oxford University Press. (original work published 1769)) Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…” In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David. Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…” These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth. [60] It should be noted that abortion is not supported as well. [61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day. Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html [62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells. Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology. Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf. [63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed. Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/ [64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society, (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law). Journal of assisted reproduction and genetics, 25(6), 271–276. https://doi.org/10.1007/s10815-008-9221-6 [66] Ruttenberg, D. (2020, May 5). The Torah of Abortion Justice (annotated source sheet). Sefaria. https://www.sefaria.org/sheets/234926.7?lang=bi&with=all&lang2=en [67] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [68] Gert, B. (2007). Common morality: Deciding what to do. Oxford Univ. Press. [69] World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 Declaration of Helsinki – WMA – The World Medical Association.; see also: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health and Human Services. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html [70] Zakarin Safier, L., Gumer, A., Kline, M., Egli, D., & Sauer, M. V. (2018). Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes. Journal of assisted reproduction and genetics, 35(7), 1219–1225. https://doi.org/10.1007/s10815-018-1171-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063839/ see also: Riordan, N. H., & Paz Rodríguez, J. (2021). Addressing concerns regarding associated costs, transparency, and integrity of research in recent stem cell trial. Stem Cells Translational Medicine, 10(12), 1715–1716. https://doi.org/10.1002/sctm.21-0234 [71] Klitzman, R., & Sauer, M. V. (2009). Payment of egg donors in stem cell research in the USA. Reproductive biomedicine online, 18(5), 603–608. https://doi.org/10.1016/s1472-6483(10)60002-8 [72] Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, M. L. (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa. Clinical trials (London, England), 3(3), 306–313. https://doi.org/10.1191/1740774506cn150oa [73] Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Georgetown University Press, 2012. [74] Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity. Research Ethics, 14(3), 1-17. https://doi.org/10.1177/1747016117739939 [75] Pirzada, N. (2022). The Expansion of Turkey’s Medical Tourism Industry. Voices in Bioethics, 8. https://doi.org/10.52214/vib.v8i.9894 [76] Stem Cell Tourism: False Hope for Real Money. Harvard Stem Cell Institute (HSCI). (2023). https://hsci.harvard.edu/stem-cell-tourism, See also: Bissassar, M. (2017). Transnational Stem Cell Tourism: An ethical analysis. Voices in Bioethics, 3. https://doi.org/10.7916/vib.v3i.6027 [77]Song, P. (2011) The proliferation of stem cell therapies in post-Mao China: problematizing ethical regulation, New Genetics and Society, 30:2, 141-153, DOI: 10.1080/14636778.2011.574375 [78] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [79] International Society for Stem Cell Research. (2024). Standards in stem cell research. International Society for Stem Cell Research. https://www.isscr.org/guidelines/5-standards-in-stem-cell-research [80] Benjamin, R. (2013). People’s science bodies and rights on the Stem Cell Frontier. Stanford University Press.
APA, Harvard, Vancouver, ISO, and other styles
16
Ricks, Thomas, Katharine Krebs, and Michael Monahan. "Introduction: Area Studies and Study Abroad in the 21st Century." Frontiers: The Interdisciplinary Journal of Study Abroad 6, no.1 (December15, 2000). http://dx.doi.org/10.36366/frontiers.v6i1.75.
Full textAbstract:
Area Studies and Study Abroad in the 21st Century The future now belongs to societies that organize themselves for learning. - Ray Marshall and Marc Tucker, Thinking for a Living, xiii Few today would argue with the conviction that nearly every phase of our daily lives is shaped and informed by global societies, corporations, events and ideas. More than ever before, it is possible to claim that we are increasingly aware of the dynamic power and penetrating effects of global flows on information, technology, the sciences, the arts, the humanities, and languages. Borderless, spaceless and timeless, such sources of knowledge, it appears, are effortlessly digested and disseminated without clocks, calendars, or physical limitations. It is, of course, a mistake to believe that packages of “instant” knowledge that appear to wing their way at megahertz speeds in and through our earthly lives account for all or nearly all that there is to know—or, more importantly, to learn—about our communities, regions and the globe itself. On the contrary: the “knowing” about how to live, to work, to prosper, or to understand ourselves and those around us is not what educators mean when they speak of intellectual achievement and practical understanding. It is the “learning” about us, our societies and our global knowledge that lies at the heart of the international educator’s life work, and it is the learning that is the most controversial aspect of education. The act of “learning,” in fact, is less objective and more subjective, is less passive and more active, and is less superficial and more profound in each of our lives. By definition, a responsible learner is one who takes on the intellectual challenge and the social and personal obligation to leave this globe a better place for those who follow, who assumes the life work of influencing the lives of others, and who is committed to making the best of every opportunity both within the reach and beyond the vision of the mind’s eye. Study abroad has traditionally been viewed as a time of seeing and viewing, however passively, the differences and similarities of other peoples, societies and cultures. The period of knowing about what others do or say can occur at any time during one’s life; however, the “knowing” of studying abroad is accomplished in the college years prior to the accumulated knowledge about practical learning and living. In this respect, study abroad has been seen as an experience which may or may not invest the students in greater or lesser insights about the peoples, societies or cultures around them. Further, when study abroad is bound up with travel or movement from place to place, it can become a passive act, so much so that travel rather than learning becomes the goal of the study abroad experience. Simply put, the more that one travels, the more, it is argued, one learns. Furthermore, while seen as desirable for “classroom learning,” some would say that no amount of academic preparation appears to be useful in the enterprise of the travel experience, since so many experiences are unpredictable, individualized and, in some cases, arbitrary. From the perspective of study abroad, it might be said that the gods of area studies no longer completely fulfill our students’ needs, while the gods of global studies have not yet fulfilled their promises. Janus-like, international educators look in one direction at a still highly intense and valued picture of local cultures and identities, and in another direction toward an increasingly common culture, economy and society. The former appears to celebrate the differences and “uncommonness” of the human experience while the latter smoothes over the differences to underscore the commonalities and sameness of our contemporary world. The choice appears to be between the particular and the universal, the local and the global. Academic preparations, such as area studies programs, appear to be unnecessary for the individualized forms of learning, such as study abroad. Indeed, since an area studies preparation may raise or strengthen stereotypical perceptions of the overseas peoples, societies and cultures, it has been argued that it best be left aside. In this context, students are viewed as a tabula rasa on which new discoveries from living and studying overseas leave an imprint or impression. It seems that sending as many students as possible in as many directions as possible has become the dominant study abroad objective. Thus, “whole world” presentations and documentation often rely on the “other” as the learning objective with little or no attempt to discriminate or distinguish the levels of learning that such “whole world” immersion entails. In recent times, additional concerns about liability, health, safety and comfort levels have been added to the “pre-departure” orientations and training programs. The “student as self-learner” continues to be viewed and treated as a “customer knowledge-consumer” within both U.S. private and public colleges and universities. In the age of “globalization,” it is the conviction of the editors of Frontiers that knowledge consumption is only a small aspect of the 21st century international educators’ arsenal. More importantly, it will be argued in this special issue on area studies and Study Abroad that the intellectual development of the U.S. undergraduate needs to be enhanced with skills of self-learning and transdisciplinary perspectives on local and regional cultures and languages. The authors contributing to this special thematic issue of Frontiers have been asked to bring their state-of-the-art thinking on area studies to bear on the key question confronting study abroad: How does specialized understanding of geographical and cultural areas of the world enhance and strengthen undergraduate learning on and beyond our campuses? In other words, in what ways do area studies inform overseas learning through the activity of study abroad? The variety of responses demonstrates two principal ways in which area studies has begun to reformulate its goals and strategies. First, area studies reaffirms a commitment to local and regional comprehensive research and teaching, and redefines its mission in terms of the need to come to grips with local knowledge and specific social and cultural practices within a globalized world. Second, area studies specialists question long-held definitions of concepts, including those of “geographical area” and “globalization,” in order to maximize contributions to U.S. undergraduate learning. David Ludden begins our issue with a review of the Social Science Research Council and the Ford Foundation’s understanding of the transition in area studies from the Sputnik era to the globalization era. Ludden notes the faculty dilemma in working in an “area.” He points out the political interests of the Cold War for public funding of such specialized academic skills, skills which, whether funded by the government or not, were and continue to be defined by the scholar first and then by finances. Drawing on his own experience at the South Asia Institute at the University of Pennsylvania, Ludden takes the reader through the intellectual rationale for area studies, and how that rationale is being redefined in favor of stronger area studies in the present globalization era. Gregory Kulacki’s study of China and the Chinese experience points accurately to one approach to defining area studies; that is, in terms of the peoples and cultures studied. In a sense, Kulacki makes it clear that Chinese studies is “legitimate” and has authority as long as it reflects the Chinese themselves, their experiences and lives. Ann Curthoys, on the other hand, notes the growing importance of defining Australians and Australian studies not only in terms of the changing experiences of contemporary Australia, but also in terms of the demands of non-Australians, who ask for more precision in defining Australians, their history, society and cultures. Richard Beach and George Sherman take on a more difficult matter, at least from the viewpoint of U.S. faculty and students. Canada is rarely seen as a study abroad site for U.S. students, not only because of its geographical position but also for its cultural and historical proximity. The overall U.S. view, albeit unflattering, is that Canada and Canadians are very much like the U.S. and Americans, so why study in Canada? Beach and Sherman argue that history, languages, and borders do make a difference, both physically as well as culturally. Using the argument of the previous area studies specialists, they are interested in the ways that Canadians have shaped and informed their cultural and social identities in the teeth of U.S. economic and political domination in the region. The implications of globalization are, perhaps, more immediately evident in the Canadian case than in any other world region. U.S. students would do well to observe the processes of adaptation and acculturation first-hand by studying and living in Canada. James Petras gives us a broader vista of regional adaptation to the economic and political forces of globalization with his essay on Latin America. Indeed, Latin America has a dynamic similar to that of Canada due to its physical, cultural and historical proximity to the U.S. It would be a mistake to see Latin America only in terms of the north-south regional dynamics, since Europe, Asia and Africa have also shaped both past and present structures and institutions within that region in ways far more dramatic than has the United States. Study abroad, Petras reminds us, is an excellent way of learning directly about Latin American societies, cultures and politics from Latin Americans themselves, a learning that may be widely different from the official U.S. diplomatic and corporate perspectives. Finally, the very familiar world regions, such as England, offer in some cases more challenges to the U.S. undergraduate than might be expected. Jane Edwards looks at Britain and all that U.S. students may or may not know about that culture and society. The study of Britain lends itself, Edwards argues, to more than the usual challenges, due to the preconceived notions that U.S. students bring with them to, say, London. Understanding the “European-ness” of Britain and its historic relationship with continental Western Europe will justify the need to see Britain as less familiar and more complex, thus necessitating the need to study, visit and live in parts of Britain and Western Europe. In this case, the area does define the country, its identity and culture in a historical interplay of social, cultural and economic forces. David Lloyd, Philip Khoury and Russell Bova invite the reader to return to large regional perspectives through African, Middle Eastern and Russian area studies. David Lloyd presents an analysis of the broad and immediate contexts of African studies. While recognizing the difficulty of establishing consistently causal links between African studies and study abroad in Africa, he delineates the significance of local, experience-based study for the development of collaborative African studies research. Lloyd argues that the benefits of study abroad in Africa to African studies belie the relatively small number of students involved. Further, assessment for funding and other purposes needs to utilize criteria that take into account the challenges of on-site study in Africa and the depth of post-study abroad participation not just in African studies per se, but in other related areas as well. Considering the recent past of Middle East studies, Philip Khoury charts its response to post-Cold War criticism. He illustrates new directions the field is taking towards including different geographic areas, and new emphasis in organizational priorities, noting the importance of funding for providing first-hand contact for students in Middle Eastern studies with scholars from the Middle East. Khoury assesses the impact of recent historical and political events in the area on Middle Eastern studies, and looks toward more inclusive research efforts. Russell Bova examines another region that has undergone considerable political, social and economic change in the 20th century. Having moved from empire to soviet socialist states and now to a confederation of nation states, Russia and, naturally, Russian area studies, offer an excellent example of local and regional complexities both in the nomenclature of the region and in the changes in Russian studies programs. Bova illustrates the need to understand the specific dynamics of local communities in their relationship to larger administrative units such as provinces, states and national capitals. In referring to the “double transition” of contemporary Russia, Bova reminds us that globalization is both a grass roots and elite process with many unlikely “bedfellows” that is also changing more rapidly each decade than had been the case fifty years ago. Finally, Richard Falk and Nancy Kanach collaborate to discuss the ways in which globalization and study abroad are emerging in the post-Cold War period. The sudden shifts of economic and political power make our world more fragile and more difficult to comprehend without considering the “computer gap” that is rapidly leaving whole communities and even nations in a more uneven relationship with the power brokers than ever before. The need to reflect with care and precision through area studies is complemented by the additional pressing need to study, see and learn outside of the U.S. Globalization means promoting study abroad and reaffirming the strengths of local and regional studies. Taken together, these essays invite international educators to reconsider notions of learning before, during and after study abroad. The writers view study abroad as an opportunity for social and intellectual engagement with other peoples and with oneself. The essays point to a variety of ways of intellectually preparing our students for their initial encounters with sets of real-life global experiences. Reflecting on such engagement and encounters allows students to begin to formulate, with increasing sophistication, specific and general concepts about individual differences, local and regional commonalities, and the global transformations of our present era. In light of the current area studies debates, we might also reconsider approaches to pre-departure preparations, create onsite projects, and reorganize the overseas curricula of study abroad programs themselves. In particular, students can continue to benefit from area and global studies programs back on the home campus upon their return, where they can enter effectively into scholarly debates and continue the learning and personal growth that began while they were abroad. Frontiers welcomes comments and suggestions for future special issues. We see ourselves and our field of international education in greater need of close cooperation with our faculty colleagues both in terms of defining the work of international learning, and in terms of formulating and designing international or global programs. We thus invite our readers to see Frontiers as a forum for such academic exchanges, and promise that Frontiers will respond to articles, essays, book reviews and reviews of resources for study abroad with collegial interest and enthusiasm. We wish to thank especially Brian Whalen, Rhoda Borcherding and our other colleagues on the Editorial Board for their support, encouragement and assistance in completing this special issue. We are particularly pleased with the authors and their willingness to listen to our requests and comments. Thomas Ricks, Villanova University Katharine Krebs, SUNY Binghamton Michael Monahan, Macalester College Suggestions for Further Reading Altbach, Philip G. and Patti McGill Peterson, eds. Higher Education in the 21st Century: Global Challenge and National Response. IIE Research Report Number 29. Annapolis, MD: IIE Books, 1999. This slim volume focuses on principal topics for colleges and universities to consider both locally and globally. Philip Altbach and Todd Davis set the tone of the volume with their “notes for an international dialogue on higher education.” Stressing the need for practical education, the authors also raise issues about the role of technology, the increase in “internationally mobile students,” the global role of graduate education, privatization of higher education, committed faculty and the threats of “managerialized” universities. The eight responses to the opening themes address specific issues for China, India, Africa and South Africa, Latin America, Japan and Europe. The work is a very good discussion text for international educators and their area studies faculty colleagues, and also provides a theoretical basis for the design and development of overseas programs. Stephen R. Graubard, ed. “Education Yesterday, Education Tomorrow.” Daedalus. Vol. 127, No. 4 (Fall, 1998). The eleven authors of this issue of the Journal of the American Academy of Arts and Sciences build off the Fall 1995 issue of Daedalus and its topic of “American Education: Still Separate, Still Unequal.” While neither accepting nor rejecting the thrust of A Nation at Risk, the authors look both at what has occurred over the past three decades, and at what is on the horizon for the next decade. In stressing reforms of systems and innovative ways of learning, the authors’ discussions invite the international educator to address a variety of ways in which students learn and to challenge the system in which they thrive. WWW. NAFSA.ORG/SECUSSA.WHYSTUDY In 1989, NAFSA and COUNCIL created the Whole World Committee (WWC). Initially chaired by John Sommers and now chaired by Mick Vandenberg, the WWC set out to find ways by which U.S. students could and would choose non-European overseas sites for a semester of study and learning. One of the tasks that the WWC accomplished was the creation of four area study essays on Africa, Asia, South America and the Middle East. Each essay, entitled “Why Study in …,” addresses basic fears and stereotyping of the non-European world regions. The essays then focus on benefits, health and safety, “getting started,” housing, and practical learning in each of these regions. In newly-attached longer versions, the essays also have a bibliography and more informative texts. The shorter versions were published serially in Transitions Abroad. NAFSA has added two additional important essays to this website, on “Class and Study Abroad” and “An African-American in South Africa.” Overall, the readers of Frontiers will be well-advised to access the articles at the website and consider using all the essays in their pre-departure orientation training, faculty area studies discussion groups, and in welcome-back sessions for returning students. Richard Falk. Predatory Globalization: A Critique. Cambridge, UK: Polity Press, 1999. The thesis of Richard Falk’s critique is that “predatory globalization’ has eroded, if not altogether broken, the former social contract that was forged between state and society during the last century or so” (p. 3). The breaking of that contract resulted from the state’s “deference to the discipline of global capital” and the neglect of the common good. Falk argues that only the “massing of strong transnational social pressures on the states of the world could alter the political equation to the point where the state could sufficiently recover its autonomy in relation to the world economy.” He demonstrates the emergence of a new kind of transnational politics referred to as “globalization-from-below.” In restoring “global civil society,” this new politics will need to move forward with the project of cosmopolitan democracy, including the protection of human rights. For the international educator, creating overseas programs that allow for a better understanding of the interconnectedness of regional and global levels is an admirable goal. More important, however, are those programs that offer U.S. undergraduates insights into “world order priorities” such as global poverty, protection of the planet, the sources of transnational violence, and “responsible sovereignty” in ways rarely found in traditional classroom learning on our campuses. Mark Tessler, Jodi Nachtwey and Anne Banda. Eds. Area Studies and Social Science: Strategies for Understanding Middle East Politics. Bloomington and Indianapolis, IN: Indiana University Press, 1999. This edited work addresses a wide range of issues involved in the “rational choice” versus area studies debate that is so well elucidated by David Ludden in the opening article of our special issue. Looking at the “area studies controversy” from the perspective of political scientists, the editors’ Introduction underscores questions that we international educators need to address ourselves. It is valuable to wonder about the “uses and abuses” of area studies in planning our overseas programs, or discussing the “internationalization” of our curricula. It is also critical to understand the Eurocentric and overly-simplistic approaches of the social science “rational choice” models. While agreeing that both area studies and the social science theories and methodologies are necessary for a global understanding, the present work places such questions within the context of the Middle East as a stimulus and a model for increasing the value of research about any country or region.
APA, Harvard, Vancouver, ISO, and other styles
You might also be interested in the bibliographies on the topic 'United States. Merit Systems Protection Board' for other source types:
Books
We offer discounts on all premium plans for authors whose works are included in thematic literature selections. Contact us to get a unique promo code!