Voices in Bioethics

The Bioethics-CSR Divide

Caio Caesar Dib — Thu, 21 Mar 2024 00:00:00 +0000

Photo by Sean Pollock on Unsplash

ABSTRACT

Bioethics and Corporate Social Responsibility (CSR) were born out of similar concerns, such as the reaction to scandal and the restraint of irresponsible actions by individuals and organizations. However, these fields of knowledge are seldom explored together. This article attempts to explain the motives behind the gap between bioethics and CSR, while arguing that their shared agenda – combined with their contrasting principles and goals – suggests there is potential for fruitful dialogue that enables the actualization of bioethical agendas and provides a direction for CSR in health-related organizations.

INTRODUCTION

Bioethics and Corporate Social Responsibility (CSR) seem to be cut from the same cloth: the concern for human rights and the response to scandal. Both are tools for the governance of organizations, shaping how power flows and decisions are made. They have taken the shape of specialized committees, means of stakeholder inclusion at deliberative forums, compliance programs, and internal processes. It should be surprising, then, that these two fields of study and practice have developed separately, only recently re-approaching one another.

There have been displays of this reconnection both in academic and corporate spaces, with bioethics surfacing as part of the discourse of CSR and compliance initiatives. However, this is still a relatively timid effort. Even though the bioethics-CSR divide presents mostly reasonable explanations for this difficult relationship between the disciplines, current proposals suggest there is much to be gained from a stronger relationship between them.

This article explores the common history of bioethics and corporate social responsibility and identifies their common features and differences. It then explores the dispute of jurisdictions due to professional and academic “pedigree” and incompatibilities in the ideological and teleological spheres as possible causes for the divide. The discussion turns to paths for improving the reflexivity of both disciplines and, therefore, their openness to mutual contributions.

I. Cut Out of the Same Cloth

The earliest record of the word “bioethics” dates back to 1927 as a term that designates one’s ethical responsibility toward not only human beings but other lifeforms as well, such as animals and plants.^[1] Based on Kantian ethics, the term was coined as a response to the great prestige science held at its time. It remained largely forgotten until the 1970s, when it resurfaced in the United States^[2] as the body of knowledge that can be employed to ensure the responsible pursuit and application of science. The resurgence was prompted by a response to widespread irresponsible attitudes toward science and grounded in a pluralistic perspective of morality.^[3] In the second half of the twentieth century, states and the international community assumed the duty to protect human rights, and bioethics became a venue for discussing rights.^[4] There is both a semantic gap and a contextual gap between these two iterations, with some of them already being established.

Corporate social responsibility is often attributed to the Berle-Dodd debate. The discussion was characterized by diverging views on the extent of the responsibility of managers.^[5] It was later settled as positioning the company, especially the large firm, as an entity whose existence is fomented by the law due to its service to the community. The concept has evolved with time, departing from a largely philanthropic meaning to being ingrained in nearly every aspect of a company’s operations. This includes investments, entrepreneurship models, and its relationship to stakeholders, leading to an increasing operationalization and globalization of the concept.^[6]

At first sight, these two movements seem to stem from different contexts. Despite the difference, it is also possible to tell a joint history of bioethics and CSR, with their point of contact being a generalized concern with technological and social changes that surfaced in the sixties. The publishing of Silent Spring in 1962 by Rachel Carson exemplifies this growing concern over the sustainability of the ruling economic growth model of its time by commenting on the effects of large-scale agriculture and the use of pesticides in the population of bees, one of the most relevant pollinators of crops consumed by humans. The book influenced both the author responsible for the coining bioethics in the 1971^[7] and early CSR literature.^[8] By initiating a debate over the sustainability of economic models, the environmentalist discourse became a precursor to vigorous social movements for civil rights. Bioethics was part of the trend as it would be carried forward by movements such as feminism and the patients’ rights movement.^[9]

Bioethics would gradually move from a public discourse centered around the responsible use of science and technology to academic and government spaces.^[10] This evolution led to an increasing emphasis on intellectual rigor and governance. The transformation would unravel the effort to take effective action against scandal and turn bioethical discourse into governance practices,^[11] such as bioethics and research ethics committees. The publication of the Belmont Report^[12] in the aftermath of the Tuskegee Syphilis Experiment, as well as the creation of committees such as the “God Committee,”^[13] which aimed to develop and enforce criteria for allocating scarce dialysis machines, exemplify this shift. On the side of CSR, this period represents, at first, a stronger pact between businesses and society due to more stringent environmental and consumer regulations. But afterward, a joint trend emerged: on one side, the deregulation within the context of neoliberalism, and on the other, the operationalization of corporate social responsibility as a response to societal concerns.^[14]

The 1990s saw both opportunities and crises that derived from globalization. In the political arena, the end of the Cold War led to an impasse in the discourse concerning human rights,^[15] which previously had been split between the defense of civil and political rights on one side and social rights on the other. But at the same time, agendas that were previously restricted territorially became institutionalized on a global scale.^[16] Events such as the European Environment Agency (1990), ECO92 in Rio de Janeiro (1992), and the UN Global Compact (2000) are some examples of the globalization of CSR. This process of institutionalization would also mirror a crisis in CSR, given that its voluntarist core would be deemed lackluster due to the lack of corporate accountability. The business and human rights movement sought to produce new binding instruments – usually state-based – that could ensure that businesses would comply with their duties to respect human rights.^[17] This rule-creation process has been called legalization: a shift from business standards to norms of varying degrees of obligation, precision, and delegation.^[18]

Bioethics has also experienced its own renewed identity in the developed world, perhaps because of its reconnection to public and global health. Global health has been the object of study for centuries under other labels (e.g., the use of tropical medicine to assist colonial expeditions) but it resurfaced in the political agenda recently after the pandemics of AIDS and respiratory diseases.^[19] Bioethics has been accused from the inside of ignoring matters beyond the patient-provider relationship,^[20] including those related to public health and/or governance. Meanwhile, scholars claimed the need to expand the discourse to global health.^[21] In some countries, bioethics developed a tight relationship with public health, such as Brazil,^[22] due to its connections to the sanitary reform movement. The United Kingdom has also followed a different path, prioritizing governance practices and the use of pre-established institutions in a more community-oriented approach.^[23] The Universal Declaration on Bioethics and Rights followed this shift toward a social dimension of bioethics despite being subject to criticism due to its human rights-based approach in a field characterized by ethical pluralism.^[24]

This scenario suggests bioethics and CSR have developed out of similar concerns: the protection of human rights and concerns over responsible development – be it economic, scientific, or technological. However, the interaction between these two fields (as well as business and human rights) is fairly recent both in academic and business settings. There might be a divide between these fields and their practitioners.

II. A Tale of Jurisdictions

It can be argued that CSR and business and human rights did not face jurisdictional disputes. These fields owe much of their longevity to their roots in institutional economics, whose debates, such as the Berle-Dodd debate, were based on interdisciplinary dialogue and the abandonment of sectorial divisions and public-private dichotomies.^[25] There was opposition to this approach to the role of companies in society that could have implications for CSR’s interdisciplinarity, such as the understanding that corporate activities should be restricted to profit maximization.^[26] Yet, those were often oppositions to CSR or business and human rights themselves.

The birth of bioethics in the USA can be traced back to jurisdictional disputes over the realm of medicine and life sciences.^[27] The dispute unfolded between representatives of science and those of “society’s conscience,” whether through bioethics as a form of applied ethics or other areas of knowledge such as theology.^[28] Amid the civil rights movements, outsiders would gain access to the social sphere of medicine, simultaneously bringing it to the public debate and emphasizing the decision-making process as the center of the medical practice.^[29] This led to the emergence of the bioethicist as a professional whose background in philosophy, theology, or social sciences deemed the bioethicist qualified to speak on behalf of the social consciousness. In other locations this interaction would play out differently: whether as an investigation of philosophically implied issues, a communal effort with professional institutions to enhance decision-making capability, or a concern with access to healthcare.^[30] In these situations, the emergence and regulation of bioethics would be way less rooted in disputes over jurisdictions.

This contentious birth of bioethics would have several implications, most related to where the bioethicist belongs. After the civil rights movements subsided, bioethics moved from the public sphere into an ivory tower: intellectual, secular, and isolated. The scope of the bioethicist would be increasingly limited to the spaces of academia and hospitals, where it would be narrowed to the clinical environment.^[31] This would become the comfort zone of professionals, much to the detriment of social concerns. This scenario was convenient to social groups that sought to affirm their protagonism in the public arena, with conservative and progressive movements alike questioning the legitimacy of bioethics in the political discourse.^[32]

Even within the walls of hospitals and clinics, bioethics would not be excused from criticism. Afterall, the work of bioethicists is often unregulated and lacks the same kind of accountability that doctors and lawyers have. Then, is there a role to be played by the bioethicist?

This trend of isolation leads to a plausible explanation for why bioethics did not develop an extensive collaboration with corporate social responsibility nor with business and human rights. Despite stemming from similar agendas, bioethics’ orientation towards the private sphere resulted in a limited perspective on the broader implications of its decisions.

This existential crisis of the discipline led to a re-evaluation of its nature and purpose. Its relevance has been reaffirmed due to the epistemic advantage of philosophy when engaging normative issues. Proper training enables the bioethicist to avoid falling into traps of subjectivism or moralism, which are unable to address the complexity of decision-making. It also prevents the naïve seduction of “scientifying” ethics.^[33] This is the starting point of a multitude of roles that can be attributed to the bioethicists.

There are three main responsibilities that fall under bioethics: (i) activism in biopolicy, through the engagement in the creation of laws, jurisprudence, and public policies; (ii) the exercise of bioethics expertise, be it through the specialized knowledge in philosophical thought, its ability to juggle multiple languages related to various disciplines related to bioethics, or its capacity to combat and avoid misinformation and epistemic distortion; (iii) and, intellectual exchange, by exercising awareness that it is necessary to work with specialists from different backgrounds to achieve its goals.^[34]

All of those suggest the need for bioethics to improve its dialogue with CSR and business and human rights. Both CSR and business and human rights have been the arena of political disputes over the role of regulations and corporations themselves, and the absence of strong stances by bioethicists risks deepening their exclusion from the public arena. Furthermore, CSR and business and human rights are at the forefront of contemporary issues, such as the limits to sustainable development and appropriate governance structures, which may lead to the acceptance of values and accomplishment of goals cherished by bioethics. However, a gap in identifying the role and nature of bioethics and CSR may also be an obstacle for bridging the chasm between bioethics and CSR.

III. From Substance to Form: Philosophical Groundings of CSR and Bioethics

As mentioned earlier, CSR is, to some extent, a byproduct of institutionalism. Institutional economics has a philosophical footprint in the pragmatic tradition^[35], which has implications for the purpose of the movement and the typical course of the debate. The effectiveness of regulatory measures is often at the center of CSR and business and human rights debates: whatever the regulatory proposal may be, compliance, feasibility, and effectiveness are the kernel of the discussion. The axiological foundation is often the protection of human rights. But discussions over the prioritization of some human rights over others or the specific characteristics of the community to be protected are often neglected.^[36] It is worth reinforcing that adopting human rights as an ethical standard presents problems to bioethics, given its grounding in the recognition of ethical pluralism.

Pragmatism adopts an anti-essentialist view, arguing that concepts derive from their practical consequences instead of aprioristic elements.^[37] Therefore, truth is transitory and context dependent. Pragmatism embraces a form of moral relativism and may find itself in an impasse in the context of political economy and policymaking due to its tendency to be stuck between the preservation of the status quo and the defense of a technocratic perspective, which sees technical and scientific progress as the solution to many of society’s issues.^[38]

These characteristics mean that bioethics has a complicated relationship with pragmatism. Indeed, there are connections between pragmatism and the bioethics discourse. Both can be traced back to American naturalism.^[39] The early effort in bioethics to make it ecumenical, thus building on a common but transitory morality,^[40] sounds pragmatic. Therefore, scholars suggest that bioethics should rely on pragmatism's perks and characteristics to develop solutions to new ethical challenges that emerge from scientific and technological progress.

Nonetheless, ethical relativism is a problem for bioethics when it bleeds from a metaethical level into the subject matters themselves. After all, the whole point of bioethics is either descriptive, where it seeks to understand social values and conditions that pertain to its scope, or normative, where it investigates what should be done in matters related to medicine, life sciences, and social and technological change. It is a “knowledge of how to use knowledge.”

Therefore, bioethics is a product of disillusionment regarding science and technology's capacity to produce exclusively good consequences. It was built around an opposition to ethical relativism—even though the field is aware of the particularity of its answers. This is true not only for the scholarly arena, where the objective is to produce ethically sound answers but also for bioethics governance, where relativism may induce decision paralysis or open the way to points of view disconnected from facts.^[41]

But there might be a point for more pragmatic bioethics. Bioethics has become an increasingly public enterprise which seeks political persuasion and impact in the regulatory sphere. When bioethics is seen as an enterprise, achieving social transformation is its main goal. In this sense, pragmatism can provide critical tools to identify idiosyncrasies in regulation that prove change is needed. An example of how this may play out is the abortion rights movement in the global south.^[42] Despite barriers to accessing safe abortion, this movement came up with creative solutions and a public discourse focused on the consequences of its criminalization rather than its moral aspects.

IV. Bridging the Divide: Connections Between Bioethics and CSR

There have been attempts to bring bioethics and CSR closer to each other. Corporate responsibility can be a supplementary strategy for achieving the goals of bioethics. The International Bioethics Committee (IBC), an institution of the United Nations Educational, Scientific and Cultural Organization (UNESCO), highlights the concept that social responsibility regarding health falls under the provisions of the Universal Declaration on Bioethics and Human Rights (UDBHR). It is a means of achieving good health (complete physical, mental, and social well-being) through social development.^[43] Thus, it plays out as a condition for actualizing the goals dear to bioethics and general ethical standards,^[44] such as autonomy and awareness of the social consequences of an organization’s governance. On this same note, CSR is a complementary resource for healthcare organizations that already have embedded bioethics into their operations^[45] as a way of looking at the social impact of their practices.

And bioethics is also an asset of CSR. Bioethics can inform the necessary conditions for healthcare institutions achieving a positive social impact. When taken at face value, bioethics may offer guidelines for ethical and socially responsible behavior in the industry, instructing how these should play out in a particular context such as in research, and access to health.^[46] When considering the relevance of rewarding mechanisms,^[47] bioethics can guide the establishment of certification measures to restore lost trust in the pharmaceutical sector.^[48] Furthermore, recognizing that the choice is a more complex matter than the maximization of utility can offer a nuanced perspective on how organizations dealing with existentially relevant choices understand their stakeholders.^[49] However, all of those proposals might come with the challenge of proving that something can be gained from its addition to self-regulatory practices^[50] within the scope of a dominant rights-based approach to CSR and global and corporate law.

It is evident that there is room for further collaboration between bioethics and CSR. Embedding either into the corporate governance practices of an organization tends to be connected to promoting the other.^[51] While there are some incompatibilities, organizations should try to overcome them and take advantage of the synergies and similarities.

CONCLUSION

Despite their common interests and shared history, bioethics and corporate social responsibility have not produced a mature exchange. Jurisdictional issues and foundational incompatibilities have prevented a joint effort to establish a model of social responsibility that addresses issues particular to the healthcare sector.

Both bioethics and CSR should acknowledge that they hold two different pieces of a cognitive competence necessary for that task: CSR offers experience on how to turn corporate ethical obligations operational, while bioethics provides access to the prevailing practical and philosophical problem-solving tools in healthcare that were born out of social movements. Reconciling bioethics and CSR calls for greater efforts to comprehend and incorporate the social knowledge developed by each field reflexively^[52] while understanding their insights are relevant to achieving some common goals.

[1]. Fritz Jahr, “Bio-Ethik: Eine Umschau Über Die Ethischen Beziehungen Des Menschen Zu Tier Und Pflanze,” Kosmos - Handweiser Für Naturfreunde 24 (1927): 2–4.

[2]. Van Rensselaer Potter, “Bioethics, the Science of Survival,” Perspectives in Biology and Medicine 14, no. 1 (1970): 127–53, https://doi.org/10.1353/pbm.1970.0015.

[3]. Maximilian Schochow and Jonas Grygier, eds., “Tagungsbericht: 1927 – Die Geburt der Bioethik in Halle (Saale) durch den protestantischen Theologen Fritz Jahr (1895-1953),” Jahrbuch für Recht und Ethik / Annual Review of Law and Ethics 21 (June 11, 2014): 325–29, https://doi.org/10.3726/978-3-653-02807-2.

[4] George J. Annas, American Bioethics: Crossing Human Rights and Health Law Boundaries (Oxford ; New York: Oxford University Press, 2005).

[5] Philip L. Cochran, “The Evolution of Corporate Social Responsibility,” Business Horizons 50, no. 6 (November 2007): 449–54, https://doi.org/10.1016/j.bushor.2007.06.004. p. 449.

[6] Mauricio Andrés Latapí Agudelo, Lára Jóhannsdóttir, and Brynhildur Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility,” International Journal of Corporate Social Responsibility 4, no. 1 (December 2019): 23, https://doi.org/10.1186/s40991-018-0039-y.

[7] Potter, “Bioethics, the Science of Survival.” p. 129.

[8] Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.” p. 4.

[9] Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 2003). p. 368-371.

[10] Jonsen. p. 372.

[11] Jonathan Montgomery, “Bioethics as a Governance Practice,” Health Care Analysis 24, no. 1 (March 2016): 3–23, https://doi.org/10.1007/s10728-015-0310-2.

[12]. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, “The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research” (Washington: Department of Health, Education, and Welfare, April 18, 1979), https://www.hhs.gov/ohrp/sites/default/files/the-belmont-report-508c_FINAL.pdf.

[13] Shana Alexander, “They Decide Who Lives, Who Dies,” in LIFE, by Time Inc, 19th ed., vol. 53 (Nova Iorque: Time Inc, 1962), 102–25.

[14]. Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.”

[15]. Boaventura de Sousa Santos, “Por Uma Concepção Multicultural Dos Direitos Humanos,” Revista Crítica de Ciências Sociais, no. 48 (June 1997): 11–32.

[16] Latapí Agudelo, Jóhannsdóttir, and Davídsdóttir, “A Literature Review of the History and Evolution of Corporate Social Responsibility.”

[17]. Anita Ramasastry, “Corporate Social Responsibility Versus Business and Human Rights: Bridging the Gap Between Responsibility and Accountability,” Journal of Human Rights 14, no. 2 (April 3, 2015): 237–59, https://doi.org/10.1080/14754835.2015.1037953.

[18]. Kenneth W Abbott et al., “The Concept of Legalization,” International Organization, Legalization and World Politics, 54, no. 3 (2000): 401–4019.

[19]. Jens Holst, “Global Health – Emergence, Hegemonic Trends and Biomedical Reductionism,” Globalization and Health 16, no. 1 (December 2020): 42–52, https://doi.org/10.1186/s12992-020-00573-4.

[20]. Albert R. Jonsen, “Social Responsibilities of Bioethics,” Journal of Urban Health: Bulletin of the New York Academy of Medicine 78, no. 1 (March 1, 2001): 21–28, https://doi.org/10.1093/jurban/78.1.21.

[21]. Solomon R Benatar, Abdallah S Daar, and Peter A Singer, “Global Health Challenges: The Need for an Expanded Discourse on Bioethics,” PLoS Medicine 2, no. 7 (July 26, 2005): e143, https://doi.org/10.1371/journal.pmed.0020143.

[22]. Márcio Fabri dos Anjos and José Eduardo de Siqueira, eds., Bioética No Brasil: Tendências e Perspectivas, 1st ed., Bio & Ética (São Paulo: Sociedade Brasileira de Bioética, 2007).

[23]. Montgomery, “Bioethics as a Governance Practice.” p. 8-9.

[24]. Aline Albuquerque S. de Oliveira, “A Declaração Universal Sobre Bioética e Direitos Humanos e a Análise de Sua Repercussão Teórica Na Comunidade Bioética,” Revista Redbioética/UNESCO 1, no. 1 (2010): 124–39.

[25] John R. Commons, “Law and Economics,” The Yale Law Journal 34, no. 4 (February 1925): 371, https://doi.org/10.2307/788562; Robert L. Hale, “Bargaining, Duress, and Economic Liberty,” Columbia Law Review 43, no. 5 (July 1943): 603–28, https://doi.org/10.2307/1117229; Karl N. Llewellyn, “The Effect of Legal Institutions Upon Economics,” The American Economic Review 15, no. 4 (1925): 665–83; Carlos Portugal Gouvêa, Análise Dos Custos Da Desigualdade: Efeitos Institucionais Do Círculo Vicioso de Desigualdade e Corrupção, 1st ed. (São Paulo: Quartier Latin, 2021). p. 84-94.

[26] Milton Friedman, “A Friedman Doctrine‐- The Social Responsibility of Business Is to Increase Its Profits,” The New York Times, September 13, 1970, sec. Archives, https://www.nytimes.com/1970/09/13/archives/a-friedman-doctrine-the-social-responsibility-of-business-is-to.html.

[27] Montgomery, “Bioethics as a Governance Practice.” p. 8.

[28] John Hyde Evans, The History and Future of Bioethics: A Sociological View, 1st ed. (New York: Oxford University Press, 2012).

[29] David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making, 2nd pbk. ed, Social Institutions and Social Change (New York: Aldine de Gruyter, 2003). p. 3.

[30] Volnei Garrafa, Thiago Rocha Da Cunha, and Camilo Manchola, “Access to Healthcare: A Central Question within Brazilian Bioethics,” Cambridge Quarterly of Healthcare Ethics 27, no. 3 (July 2018): 431–39, https://doi.org/10.1017/S0963180117000810.

[31] Jonsen, “Social Responsibilities of Bioethics.”

[32] Evans, The History and Future of Bioethics. p. 75-79, 94-96.

[33] Julian Savulescu, “Bioethics: Why Philosophy Is Essential for Progress,” Journal of Medical Ethics 41, no. 1 (January 2015): 28–33, https://doi.org/10.1136/medethics-2014-102284.

[34] Silvia Camporesi and Giulia Cavaliere, “Can Bioethics Be an Honest Way of Making a Living? A Reflection on Normativity, Governance and Expertise,” Journal of Medical Ethics 47, no. 3 (March 2021): 159–63, https://doi.org/10.1136/medethics-2019-105954; Jackie Leach Scully, “The Responsibilities of the Engaged Bioethicist: Scholar, Advocate, Activist,” Bioethics 33, no. 8 (October 2019): 872–80, https://doi.org/10.1111/bioe.12659.

[35] Philip Mirowski, “The Philosophical Bases of Institutionalist Economics,” Journal of Economic Issues, Evolutionary Economics I: Foundations of Institutional Thought, 21, no. 3 (September 1987): 1001–38.

[36] David Kennedy, “The International Human Rights Movement: Part of the Problem?,” Harvard Human Rights Journal 15 (2002): 101–25.

[37] Richard Rorty, “Pragmatism, Relativism, and Irrationalism,” Proceedings and Addresses of the American Philosophical Association 53, no. 6 (August 1980): 717+719-738.

[38]. Mirowski, “The Philosophical Bases of Institutionalist Economics.”

[39]. Glenn McGee, ed., Pragmatic Bioethics, 2nd ed, Basic Bioethics (Cambridge, Mass: MIT Press, 2003).

[40]. Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 7th ed (New York: Oxford University Press, 2013).

[41]. Montgomery, “Bioethics as a Governance Practice.”

[42]. Debora Diniz and Giselle Carino, “What Can Be Learned from the Global South on Abortion and How We Can Learn?,” Developing World Bioethics 23, no. 1 (March 2023): 3–4, https://doi.org/10.1111/dewb.12385.

[43]. International Bioethics Committee, On Social Responsibility and Health Report (Paris: Unesco, 2010).

[44]. Cristina Brandão et al., “Social Responsibility: A New Paradigm of Hospital Governance?,” Health Care Analysis 21, no. 4 (December 2013): 390–402, https://doi.org/10.1007/s10728-012-0206-3.

[45] Intissar Haddiya, Taha Janfi, and Mohamed Guedira, “Application of the Concepts of Social Responsibility, Sustainability, and Ethics to Healthcare Organizations,” Risk Management and Healthcare Policy Volume 13 (August 2020): 1029–33, https://doi.org/10.2147/RMHP.S258984.

[46]The Biopharmaceutical Bioethics Working Group et al., “Considerations for Applying Bioethics Norms to a Biopharmaceutical Industry Setting,” BMC Medical Ethics 22, no. 1 (December 2021): 31–41, https://doi.org/10.1186/s12910-021-00600-y.

[47] Anne Van Aaken and Betül Simsek, “Rewarding in International Law,” American Journal of International Law 115, no. 2 (April 2021): 195–241, https://doi.org/10.1017/ajil.2021.2.

[48] Jennifer E. Miller, “Bioethical Accreditation or Rating Needed to Restore Trust in Pharma,” Nature Medicine 19, no. 3 (March 2013): 261–261, https://doi.org/10.1038/nm0313-261.

[49] John Hardwig, “The Stockholder – A Lesson for Business Ethics from Bioethics?,” Journal of Business Ethics 91, no. 3 (February 2010): 329–41, https://doi.org/10.1007/s10551-009-0086-0.

[50] Stefan van Uden, “Taking up Bioethical Responsibility?: The Role of Global Bioethics in the Social Responsibility of Pharmaceutical Corporations Operating in Developing Countries” (Mestrado, Coimbra, Coimbra University, 2012).

[51] María Peana Chivite and Sara Gallardo, “La bioética en la empresa: el caso particular de la Responsabilidad Social Corporativa,” Revista Internacional de Organizaciones, no. 13 (January 12, 2015): 55–81, https://doi.org/10.17345/rio13.55-81.

[52] Teubner argues that social spheres tend to develop solutions autonomously, but one sphere interfering in the way other spheres govern themselves tends to result in ineffective regulation and demobilization of their autonomous rule-making capabilities. These spheres should develop “reflexion mechanisms” that enable the exchange of their social knowledge and provide effective, non-damaging solutions to social issues. See Gunther Teubner, “Substantive and Reflexive Elements in Modern Law,” Law & Society Review 17, no. 2 (1983): 239–85, https://doi.org/10.2307/3053348.

What COVID-19 Vaccine Distribution Disparity Reveals About Solidarity

Cornelius Ewuoso — Fri, 02 Feb 2024 00:00:00 +0000

Photo by Spencer Davis on Unsplash

ABSTRACT

Current conceptions of solidarity impose a morality and sacrifice that did not prevail in the case of COVID-19 vaccine distribution. Notably, the vaccine distribution disparity revealed that when push came to shove, in the case of global distribution, self-interested persons reached inward rather than reaching out, prioritized their needs, and acted to realize their self-interest. Self-interest and loyalty to one’s own group are natural moral tendencies. For solidarity to be normatively relevant in difficult and emergency circumstances, solidarity scholars ought to leverage the knowledge of the human natural tendency to prioritize one’s own group. This paper recommends a nonexclusive approach to solidarity that reflects an understanding of rational self-interest but highlights commonalities among all people. A recommended task for future studies is to articulate what the account of solidarity informed by loyalty to the group would look like.

INTRODUCTION

The distribution of COVID-19 vaccines raises concerns about the normative relevance of the current conceptions of solidarity. Current conceptions of solidarity require individuals to make sacrifices they will reject in difficult and extreme situations. To make it more relevant in difficult situations, there is a need to rethink solidarity in ways that align with natural human dispositions. The natural human disposition or tendency is to have loyalty to those to whom one relates, to those in one’s own group (by race, ethnicity, neighborhood, socioeconomic status, etc.), or to those in one’s location or country. While some may contend that such natural dispositions should be overcome through moral enhancement,^[1] knowledge about self-interest ought to be leveraged to reconceptualize solidarity. Notably, for solidarity to be more relevant in emergencies characterized by shortages, solidarity ought to take natural human behaviors seriously. This paper argues that rather than seeing solidarity as a collective agreement to help others out of a common interest or purpose, solidarity literature must capitalize on human nature’s tendency toward loyalty to the group. One way to do this is by expanding the group to the global community and redefining solidarity to include helping the human race when emergencies or disasters are global.

The first section describes the current conception of solidarity, altruism, and rational self-interest. The second section discusses how the moral imperative to cooperate by reaching out to others did not lead to equitable COVID-19 vaccine distribution. The third section argues that solidarity should be rethought to align with natural human dispositions toward loyalty to groups and rational self-interest. The final section briefly suggests the global community be the group for nonexclusive solidarity.

I. Solidarity: Understanding Its Normative Imperatives

Solidarity literature is vast and complex, attracting contributions from authors from countries of all income levels.^[2] Notably, the literature addresses how solidarity develops from interpersonal, then group to institutional, and how it is motivated and maintained at different levels.^[3] Solidarity is unity among people with a shared interest or goal.^[4] The term was popularized during an anti-communist labor movement in Poland.^[5] While a show of solidarity traditionally meant solidarity within a group, for example, workers agreeing with and supporting union objectives and leaders,^[6] it has come to include sympathy/empathy and action by those outside the group who stand with those in need. In bioethics, the Nuffield Council defines solidarity as “shared practices reflecting a collective commitment to carry financial, social, emotional, and or other ‘costs’ to assist others.”^[7] As conceptualized currently, solidarity prescribes a morality of cooperation and may incorporate altruism.

Solidaristic actions like aiding others or acting to enhance the quality of others’ lives are often motivated by emotive connections/relations. For this reason, Barbara Prainsack and Alena Buyx define solidarity as “a practice by which people accept some form of financial, practical, or emotional cost to support others to whom they consider themselves connected in some relevant respect.”^[8] Although this description has been critiqued, the critics^[9] do not deny that sympathy and understanding are the bases for “standing up beside” or relating to others. Political solidarity is a “response to injustice, oppression, or social vulnerability”^[10] and it entails a commitment to the betterment of the group.

“Rational self-interest” describes when parties behave in ways that make both parties better off.^[11] They may be partly motivated by their own economic outcome. It may be that when some regions or groups act solidaristically, they are also motivated by shared economic goals.^[12] Rational self-interest is not always opposed to the commitment to collectively work for the group’s good. Rational self-interest can intersect with collective action when parties behave in ways that make both parties better off. For example, one study found that individuals are willing to bear the burden of higher taxes in favor of good education policies that significantly increase their opportunities to have a good life.^[13] Rationally self-interested persons may be partly motivated by their own economic outcome. It may be that when some regions or groups act solidaristically, they are also motivated by shared economic goals.^[14] Specifically, individuals, organizations, and governments are driven to positively identify with or aid others because they feel connected to them, share the same interest, or would benefit from the same action. Cooperating with others on this basis guarantees their interests. Individuals will be less likely to help those with whom they do not feel connected. Respect, loyalty, and trust among solidary partners are equally grounded in this belief. “[S]olidarity involves commitment, and work as well as the recognition that even if we do not have the same feeling, or the same lives, or the same bodies, we do live on common grounds.”^[15] Although individuals are more likely to exhibit solidarity with those to whom they feel connected, their lives and interests are still different.

Some African philosophers describe solidarity as entailing reciprocal relations and collective responsibility.^[16] The bases for positively acting to benefit others are communal relations and individual flourishing, similar to solidarity as it is described in the global literature. Common motifs and maxims typify this belief: the West African motifs like the Siamese Crocodile and the African maxims like “the right arm washes the left hand and the left arm washes the right arm”, and the Shona phrases “Kukura Kurerwa” and “Chirere chichazo kurerawo” – both meaning the group’s development is vital for the individual’s development.^[17] As a reciprocal relation, solidaristic actions are instrumentalized for one’s self-affirmation or self-emergence. This view underlies practices in Africa like letsema, which is an agricultural practice where individuals assist each other in harvesting their farm produce. It is also the animating force underlying a favorable disposition towards joint ventures like the ajo (an African contributing saving scheme whereby savings are shared among contributors by rotation).^[18] Furthermore, as entailing collective ownership, solidaristic actions become ways of affirming each other’s destiny because it is in one’s best interest to cooperate with them this way or help others realize their life goals given the interconnectedness of lives. One advantage of forming solidary union that reaches out to others is that they possess qualities and skills that one lacks. This application of solidarity is more localized than solidarity among countries or global institutions.

Furthermore, solidarity also entails altruism, an idea that is particularly common in the philosophical literature of low-income countries. On this account, solidarity implies a voluntary decision to behave in ways that make individuals better off for their own sake. Here, it matters only that some have thought about solidarity this way. Moreover, this belief informs pro-social behaviors – altruism is acting solely for the good of others.^[19] Altruistic behaviors are motivated by empathy, which is an acknowledgement of individuals who require aid, and sensitivity, which is a thoughtful response to individuals in need of help. Solidarity can seem to be a call to help strangers rather than a genuine feeling of uniting with people for a common cause. Altruism and solidarity appear similar although they are distinct in that solidarity is not merely helping others. It is helping others out of a feeling of unity. In some cultures in Africa, an indifference to the needs of others or a failure to act solely in ways that benefit others or society are often considered an exhibition of ill will.^[20] Precisely, the phrases “Kukura Kurerwa” and “Chirere chichazo kurerawo” among the Shona people in Southern Africa morally compel one to play an active role in the growth and improvement of others. “The core of improving others’ well-being,” as explained, “is a matter of meeting their needs, not merely basic ones but also those relevant to higher levels of flourishing, e.g. being creative, athletic, theoretical.”^[21] On this basis, self-withdrawal, self-isolation, and unilateralism, would be failures to be solidaristic.

II. COVID-19 Vaccine Distribution Disparity And The Imperative To Reach Out

The strength and benefits of cooperation are well documented. COVID-19 vaccine distribution did not reflect solidarity despite the use of rhetoric suggesting it. COVID-19 vaccine distribution disparity exemplifies how solidarity requires individuals to make sacrifices that they will refuse under challenging circumstances.

Solidaristic rhetoric was not uncommon during the COVID-19 pandemic. This was expressed through maxims like “Stronger together”, “No one is safe until everyone is safe”, “We are all in this together”, and “Flatten the curve”, as well as cemented through actions like physical distancing, mask-wearing, travel restrictions, and limits on social gatherings. Before the pandemic, solidarity rhetoric informed alliances like the Black Health Alliance that was created to enable Black people in Canada to access health resources.

This rhetoric and the global recognition of the vital importance of exhibiting solidarity had little if any impact on preventing vaccine distribution disparity. Notably, the World Health Organization set a goal of global vaccination coverage of 70 percent. The 70 percent figure was recognized as key for ending the pandemic, preventing the emergence of new variants, and facilitating global economic recovery.^[22] The solidaristic rhetoric that no country was safe until all countries were safe did not result in enough vaccine distribution. Nor did the rational self-interest of common economic goals. The economic impact of the pandemic has been huge for most nations, costing the global community more than $2 trillion.^[23] Vaccine distribution disparity across countries and regions undermined international efforts to end the COVID-19 pandemic.

The disparity revealed that self-interested persons, organizations, and countries reached inward, prioritized their needs, and acted to realize their own self-interest. Empirical studies confirmed the disparity at the macro and micro levels. Some of the findings are worth highlighting. The number of vaccine doses injected in high-income countries was 69 times higher than that in low-income countries.^[24] In fact, the UK had doubly vaccinated about 75 percent of its adult population by February 2022, while more than 80 percent of African nations had not received a single dose of the vaccine.^[25] Precisely, the national uptake of vaccines in Uganda (which is a low-income economy without COVID-19 production capacity) was “6 percent by September 2021 and 63 percent by June 2022. The vaccination coverage in the country was 2 percent by September 2021 and 42 percent by June 2022. Yet both the national COVID-19 vaccination uptake and coverage were far below WHO targets for these dates.^[26] Although a report which assessed the impact of COVID-19 vaccines in the first of year of vaccination showed that about 19 million COVID-19-related deaths were averted, they were mainly in the high-income countries rather than in countries that failed to reach the vaccine coverage threshold for preventing the emergence of new variants.^[27] There were more than 250,000 COVID-related deaths in African countries.^[28] Though this figure is significantly lower than reported COVID-19 deaths in North America (1.6 million), the report and other studies confirm that many of the deaths in Africa could have been prevented if the vaccines had been widely distributed in the region.^[29]

Still at the macro level, whereas 78 percent of individuals in high-income countries were vaccinated by February 15, 2022, only 11 percent of persons in low-income countries were vaccinated by the same date.^[30] By February 15, 2022, high-income countries like Lithuania and Gibraltar (a UK territory) had more than 300 percent of doses required for vaccinating their population, while low-income countries in Africa had only managed to secure about 10 percent of the necessary vaccine doses for their people. Burundi had vaccinated less than 1 percent of its population by December 2022.

The disparity between countries of similar income levels was also evident. For example, among 75 low- and middle-income countries, only about 14 countries reported vaccinating at least 50 percent of their population. And, while high-income countries like Qatar had secured more than 105 percent of doses for their people, other high-income countries like Liechtenstein had only managed about 67 percent vaccination coverage by December 2022.^[31] Within countries, vaccination coverage gaps were also evident between urban and rural areas, with the former having higher vaccination coverage than the latter.^[32]

There were many tangible solidaristic efforts to cooperate or reach out through schemes like the COVID-19 Vaccines Global Access (COVAX), African Vaccine Acquisition Trust (AVAT) and Technology Access Pool (C-TAP). Notably, the schemes were testaments of the global recognition to lift others as we rise and not leave anyone behind. Both high-income and low- and middle-income countries supported the programs as an expression of solidarity. Indeed, many low- and middle-income countries secured about 800 million doses through these schemes by the end of December 2021. Nonetheless, this was still far below these countries’ two-billion-dose target by the same date. The wealthier countries’ rhetoric of support did not lead to delivery of enough vaccines. The support by high-income countries seems disingenuous. While high-income countries at first allocated vaccines carefully and faced shortages, they had plentiful supplies before many countries had enough for their most vulnerable people. Thus, these schemes did very little to ensure the well-being of people in low- and middle-income countries that relied on them.

These schemes had many shortcomings. For example, COVAX relied on donations and philanthropy to meet its delivery targets. In addition, despite their support for these schemes, many high-income countries hardly relied on them for their COVID-19 vaccine procurement. Instead, these high-income countries made their own private arrangements. In fact, high-income countries relied on multilateral agreements and direct purchases to secure about 91 percent of their vaccines.^[33] These solidaristic underfunded schemes had to compete to procure vaccines with the more highly resourced countries.

Arguably, many factors were responsible for the uneven distribution of COVID-19 vaccines. For example, vaccine production sites facilitated vaccine nationalism whereby countries prioritized their needs and enabled host states like the UK to stockpile vaccines quickly. Regions without production hubs, like many places in Africa, experienced supply insecurity.^[34] The J & J-Aspen Pharmacare deal under which a South African facility would produce the J&J COVID vaccine did not improve the local supply.^[35] Companies sold vaccines at higher than the cost of production despite pledges by many companies to sell COVID-19 vaccines at production cost. AstraZeneca was the only company reported to have initially sold vaccines at cost until it replaced this with tiered pricing in late 2021.^[36] Moderna estimated a $19 billion net profit from COVID-19 vaccine sales by the end of 2021. Pricing practices undermined solidaristic schemes designed to help low-income countries access the doses required for their populations.^[37]

The unwillingness of Western pharmaceutical companies like Johnson and Johnson, Pfizer-BioNTech, and Moderna to temporarily relinquish intellectual property rights or transfer technology that would have eased vaccine production in low-income countries that lacked production capabilities even when taxpayers’ money or public funding accelerated about 97 percent of vaccine discovery is another example of acting without solidarity. South Africa and India proposed the transfer of essential technological information about COVID-19 vaccines to them to increase local production.^[38] The EU, UK, and Germany, which host many of these pharmaceutical companies, opposed the technology transfers.^[39] Corporations protected their intellectual property and technology for profits.

There were many other factors, like vaccine hoarding. Although the solidaristic rhetoric suggested a global community united to help distribute the vaccine, COVID-19 vaccine distribution demonstrates that individuals, institutions, regions, or states will prioritize their needs and interests. This leads to the question, “What sort of behaviors can reasonably be expected of individuals in difficult situations? In what ways can solidarity be re-imagined to accommodate such behaviors? Ought solidarity be re-imagined to accommodate such actions?

III. COVID-19 Vaccine Disparity: Lessons For Solidarity Literature

COVID-19 vaccine distribution disparity has been described as inequitable and immoral.^[40] One justification for the negative depiction is that it is irresponsible of individual states or nations to prioritize their own needs over the global good, especially when realizing the global interest is necessary for ensuring individual good. Although such contributions to the ethical discourse on COVID-19 vaccine disparity are essential, they could also distract attention from vital conversations concerning how and why current solidarity conceptions can better reflect core human dispositions.

To clarify, the contestation is not that solidaristic acts of reaching out to others are morally unrealistic or non-realizable. There are historical examples of solidarity, particularly to end a common affliction or marginalization. An example is the LGBT support of HIV/AIDS-infected persons based on their shared identities to confront and end the stigma, apathy, and homophobia that accompanied the early years of the crisis.^[41] Equally, during the apartheid years in South Africa, Black students formed solidarity groups as a crucial racial response to racism and oppression by the predominantly White government.^[42] Additionally, the World Health Organization’s (WHO) director, Tedros Ghebreyesus cited solidarity and its rhetoric as the reason for the resilience of societies that safely and efficiently implemented restrictive policies that limited COVID-19 transmission.

To improve its relevance to emergencies, solidarity ought to be reconceptualized considering COVID-19 vaccine distribution. As demonstrated by the COVID-19 vaccine distribution disparity, individuals find it difficult to help others in emergencies and share resources given their internal pressing needs. Moreover, humans have a natural tendency to take care of those with whom they identify. That may be by country or region, race, ethnicity, socioeconomic status, type of employment, or other grouping. By extension, the morality that arises from the tendency towards “the tribe” is sometimes loyalty to one’s broader group. Evidence from human evolutionary history, political science, and psychology yields the claim that “tribal [morality] is a natural and nearly ineradicable feature of human cognition, and that no group—not even one’s own—is immune.”^[43] Tribal morality influences mantras like America First, South Africans Above Others, or (arguably) Brexit. These conflict with solidarity.

As another global example, climate change concerns are not a priority of carbon’s worst emitters like the US, China, and Russia. In fact, in 2017, the US pulled out of the Paris Agreement, a tangible effort to rectify the climate crisis.^[44] Droughts experienced by indigenous people in Turkana, the melting ice experienced by the Inuit, the burning bush experienced by the aboriginal Australians, and the rise in ocean levels that remain a constant threat to the Guna are examples of the harm of the changing climate. In the case of climate action, it appears that governments prioritize their self-interests or the interests of their people, over cooperation with governments of places negatively impacted. In the instance of COVID-19 vaccine distribution disparity, loyalty to the group was evident as states and countries kept vaccines for their own residents.

Solidarity has a focus on shared interests and purpose, but in its current conceptions it ignores human nature’s loyalty to groups. In emergencies that involve scarcity, solidarity needs to be redefined to address the impulse to keep vaccines for one’s own country’s population and the choice to sell vaccines to the highest bidder. For solidarity to be normatively relevant in difficult and emergency circumstances, solidarity scholars ought to leverage the knowledge of human natural tendency to prioritize one’s own group to rethink this concept.

IV. Rethinking Solidarity For Challenging Circumstances

In the globalized world, exhibiting solidarity with one another remains intrinsically valuable. It makes the world better off. But the challenge remains ensuring that individuals can exhibit solidarity in ways that align with their natural instincts. Rather than helping those seen as other, or behaving altruistically without solidarity, people, governments, and organizations should engage in solidarity to help others and themselves as part of the global community. A rational self-interest approach to solidarity is similar, while altruism is distinguishable.

Solidarity can be expanded to apply when the human race as a whole is threatened and common interests prevail, sometimes called nonexclusive solidarity.^[45] That is distinguished from altruism as solidarity involves seeing each other as having shared interests and goals – the success of others would lead to the success of all. For example, cleaner air or limiting the drivers of human-made climate change would benefit all. Warning the public, implementing social distancing and masking, and restricting travel are examples of global goals that required solidaristic actions to benefit the human race.^[46]

Arguably, this conception of solidarity could apply to a scarce resource, like the COVID-19 vaccine. Notably, the solidarity rhetoric that this gives rise to is that COVID-19 vaccine equitable distribution is a fight for the human race. Solidarity has been applied to scarcity and used to overcome deprivation due to scarcity. In the case AIDS/HIV, there were many arguments and then programs to reduce drug prices and to allocate and condoms to countries where the epidemic was more pronounced and continuing to infect people. Similarly, a solidarity-inspired effort led to treatments for resistant tuberculosis.^[47]

Summarily, I suggest that we cannot tackle global health problems without exhibiting solidarity with one another. Humans can exhibit solidarity in ways that align with their natural instincts. To do this, nonexclusive solidarity described in this section, is required. Although the nonexclusive solidarity recognizes difference, it avoids the “logic of competition that makes difference toxic.”^[48] Without necessarily requiring every country's leaders to prioritize global citizens equally, the nonexclusive solidarity at least, prohibits forms of competition that undermine initiatives like COVAX from securing the required vaccines to reach the vaccine coverage target.

CONCLUSION

COVID-19 vaccine distribution disparity does not create a new problem. Instead, it reveals an existing concern. This is the disconnect between dominant human psychological makeup and the sort of solidarity expounded in current literature or solidaristic actions. Notably, it reveals a failure of current solidarity conceptions to reflect the natural human tendency to prioritize the interests of one’s own group. As such, the disparity requires rethinking or reconceptualization of solidarity in ways that align with the dominant human tendency. As conceptualized currently, solidarity enjoins a form of morality that many found very difficult to adhere to during the COVID-19 pandemic. Notably, they perceived solidarity as a call to help strangers. Humans are linked by something that is far more important than a relationship between strangers. The unbreakable bond among humans that this idea gives rise to would necessitate genuine concern for each other’s well-being since we are implicated in one another's lives. The exact ways a conception of solidarity that applies to the global community can inform guidelines and policies in emergencies and difficult situations when individuals are expected to be solidaristic is a recommended task for future studies.

[1] Ingmar Persson & Julian Savulescu 2019. The Duty to be Morally Enhanced. Topoi, 38, 7-14.

[2] M. Inouye 2023. On Solidarity, Cambridge, MA, Boston Review.

[3] Barbara Prainsack & Alena Buyx 2011. Solidarity. Reflections on an Emerging Concept in Bioethics. Summary.

[4] Oxford Languages (“unity or agreement of feeling or action, especially among individuals with a common interest; mutual support within a group.”)

[5] Mikolaj Glinski. 2015. The Solidarity Movement: Anti-Communist, Or Most Communist Thing Ever? The Solidarity Movement: Anti-Communist, Or Most Communist Thing Ever?. https://culture.pl/en/article/the-solidarity-movement-anti-communist-or-most-communist-thing-ever.

[6] Carola Frege, Edmund Heery & Lowell Turner 2004. 137The New Solidarity? Trade Union Coalition-Building in Five Countries. In: FREGE, C. & KELLY, J. (eds.) Varieties of Unionism: Strategies for Union Revitalization in a Globalizing Economy. Oxford University Press.

[7] Barbara Prainsack & Alena Buyx 2011. Solidarity. Reflections on an Emerging Concept in Bioethics. Summary.

[8] Prainsack & Buyx, 2017.

[9] Angus Dawson & Bruce Jennings 2012. The Place of Solidarity in Public Health Ethics. Public Health Reviews, 34, 4.

[10] Sally J. Scholz 2008. Political Solidarity, Penn State University Press.

[11] Emanuele Bertusi. 2017. An analysis of Adam Smith's concept of self-interest: From Selfish behavior to social interest. Libera Universita Internazionale Degli Studi Sociali.

[12] Sally J. Scholz 2008. Political Solidarity, Penn State University Press.

[13] Marius R. Busemeyer & Dominik Lober 2020. Between Solidarity and Self-Interest: The Elderly and Support for Public Education Revisited. Journal of Social Policy, 49, 425-444.

[14] Scholz, 2008.

[15] Sara Ahmed 2004. The Cultural Politics of Emotion, New York, Routledge.

[16] C. Ewuoso, T. Obengo & C. Atuire 2022. Solidarity, Afro-communitarianism, and COVID-19 vaccination. J Glob Health, 12, 03046.

[17] J Mugumbate 2013. Exploring African philosophy: The value of ubuntu in social work. Afri J Soc W 3, 82-100.

[18] Salewa Olawoye-Mann 2023. 55Beyond Coping: The Use of Ajo Culture among Nigerian Immigrants to Counter Racial Capitalism in North America. In: HOSSEIN, C. S., AUSTIN, S. D. W. & EDMONDS, K. (eds.) Beyond Racial Capitalism: Co-operatives in the African Diaspora. Oxford University Press.

[19] Estrella Gualda 2022. Altruism, Solidarity and Responsibility from a Committed Sociology: Contributions to Society. The American Sociologist, 53, 29-43.

[20] Ewuoso, Obengo & Atuire 2022.

[21] T. Metz 2015. An African theory of social justice. In: BIOSEN, C. & MURRAY, M. (eds.) Distributive Justice Debates in Political and Social Thought: Perspectives on Finding a Fair Share. New York: Routledge.

[22] Victoria Pilkington, Sarai Mirjam Keestra & Andrew Hill 2022. Global COVID-19 Vaccine Inequity: Failures in the First Year of Distribution and Potential Solutions for the Future. Frontiers in Public Health, 10.

[23] M. Hafner, E. Yerushalmi, C. Fays, E. Dufresne & C. Van Stolk 2022. COVID-19 and the Cost of Vaccine Nationalism. Rand Health Q, 9, 1.

[24] Mohsen Bayati, Rayehe Noroozi, Mohadeseh Ghanbari-Jahromi & Faride Sadat Jalali 2022. Inequality in the distribution of Covid-19 vaccine: a systematic review. International Journal for Equity in Health, 21, 122.

[25] Graham Dutfield, Siva Thambisetty, Aisling Mcmahon, Luke Mcdonagh & Hyo Kang 2022. Addressing Vaccine Inequity During the COVID-19 Pandemic: The TRIPS Intellectual Property Waiver Proposal and Beyond. Cambridge Law Journal, 81.

[26] Patrick King, Mercy Wendy Wanyana, Richard Migisha, Daniel Kadobera, Benon Kwesiga, Biribawa Claire, Michael Baganizi & Alfred Driwale. 2023. Covid 19 vaccine uptake and coverage, Uganda 2021-2022. UNIPH Bulletin, 8. https://uniph.go.ug/covid-19-vaccine-uptake-and-coverage-uganda-2021-2022/#:

[27] O. J. Watson, G. Barnsley, J. Toor, A. B. Hogan, P. Winskill & A. C. Ghani 2022. Global impact of the first year of COVID-19 vaccination: a mathematical modelling study. Lancet Infect Dis, 22, 1293-1302.

[28] Arcgis January 21, 2024. African dashboard for tracking the COVID-19 in real-time. https://www.arcgis.com/apps/dashboards/b959be51c0014845ad44142bce1b68fe

[29] Jai K. Das, Hsien Yao Chee, Sohail Lakhani, Maryam Hameed Khan, Muhammad Islam, Sajid Muhammad & Zulfiqar A. Bhutta 2023. COVID-19 Vaccines: How Efficient and Equitable Was the Initial Vaccination Process? Vaccines, 11, 11. O. J. Watson, G. Barnsley, J. Toor, A. B. Hogan, P. Winskill & A. C. Ghani 2022. Global impact of the first year of COVID-19 vaccination: a mathematical modelling study. Lancet Infect Dis, 22, 1293-1302.

[30] Pilkington, Keestra & Hill 2022.

[31] Kunyenje, et al. 2023.

[32] Pilkington, Keestra & Hill 2022.

[33] Jai K. Das, Hsien Yao Chee, Sohail Lakhani, Maryam Hameed Khan, Muhammad Islam, Sajid Muhammad & Zulfiqar A. Bhutta 2023. COVID-19 Vaccines: How Efficient and Equitable Was the Initial Vaccination Process? Vaccines, 11, 11.

[34] Kunyenje, et al. 2023.

[35] Lynsey Chutel. 2022. Africa's first COVID-19 vaccine factory hasn't received a single order. Africa's first COVID-19 vaccine factory hasn't received a single order. https://www.nytimes.com/2022/05/12/world/africa/south-africa-covid-vaccine-factory.html

[36] Graham Dutfield, Siva Thambisetty, Aisling Mcmahon, Luke Mcdonagh & Hyo Kang 2022. Addressing Vaccine Inequity During the COVID-19 Pandemic: The TRIPS Intellectual Property Waiver Proposal and Beyond. Cambridge Law Journal, 81.

[37] Dutfield, et al.

[38] Hannah Balfour. June 17, 2022 2022. WTO waives intellectual property rights for COVID-19 vaccines. European Pharmaceutical Review https://www.europeanpharmaceuticalreview.com/news/172329/breaking-news-wto-waives-intellectual-property-rights-for-covid-19-vaccines/

[39] Government Uk. 2021. UK statements to the TRIPS Council: Item 15 waiver proposal for COVID-19. UK statements to the TRIPS Council: Item 15 waiver proposal for COVID-19 . https://www.gov.uk/government/news/uk-statement-to-the-trips-council-item-15

[40] Victoria Pilkington, Sarai Mirjam Keestra & Andrew Hill 2022. Global COVID-19 Vaccine Inequity: Failures in the First Year of Distribution and Potential Solutions for the Future. Frontiers in Public Health, 10.

[41] Benjamin Klassen 2021. ‘Facing it Together’: Early Caregiving Responses to Vancouver's HIV/AIDS Epidemic. Gender & History, 33, 774-789.

[42] Mabogo P. More 2009. Black solidarity: A philosophical defense. Theoria: J Soc and Pol Theory, 56, 20-43.

[43] Cory J. Clark, Brittany S. Liu, Bo M. Winegard & Peter H. Ditto 2019. Tribalism Is Human Nature. Current Directions in Psychological Science, 28, 587-592.

[44] Hai-Bin Zhang, Han-Cheng Dai, Hua-Xia Lai & Wen-Tao Wang 2017. U.S. withdrawal from the Paris Agreement: Reasons, impacts, and China's response. Advances in Climate Change Research, 8, 220-225.

[45] Arto Laitinen & Anne Birgitta Pessi 2014. Solidarity: Theory and Practice. An Introduction. In: LAITINEN, A. & PESSI, A. B. (eds.) Solidarity: Theory and Practice. Lexington Books.

[46] X. Li, W. Cui & F. Zhang 2020. Who Was the First Doctor to Report the COVID-19 Outbreak in Wuhan, China? J Nucl Med, 61, 782-783.

[47] Atuire, C. A., & Hassoun, N. 2023. Rethinking solidarity towards equity in global health: African views. International journal for equity in health, 22(1), 52. https://doi.org/10.1186/s12939-023-01830-9

[48] Samo Tomšič 2022. No Such Thing as Society? On Competition, Solidarity, and Social Bond. differences, 33, 51-71.

Fostering Medical Students’ Commitment to Beneficence in Ethics Education

Philip Reed, Joseph Caruana — Tue, 23 Jan 2024 00:00:00 +0000

PHOTO ID 121339257© Designer491| Dreamstime.com

ABSTRACT

When physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be apparent conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters future physicians’ commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. We use an ethical dilemma that was presented to a group of third-year medical students to examine how ethics education might be causing them to give undue deference to autonomy, thereby undermining their commitment to beneficence.

INTRODUCTION

The right of patients to choose which treatments they prefer is rooted in today’s social mores and taught as a principle of medical ethics as respect for autonomy. Yet, when physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be a conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters a commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy.

I. An Ethical Dilemma

The impetus for this paper arose when students who were completing their third clinical year discussed a real-life ethical dilemma. A middle-aged man developed a pulmonary hemorrhage while on blood thinners for a recently placed coronary stent. The bleeding was felt to be reversible, but the patient needed immediate intubation or he would die. The cardiologist was told that the patient previously expressed to other physicians that he never wanted to be intubated. However, the cardiologist made the decision to intubate the patient anyway, and the patient eventually recovered.^[1]

Students were asked if they believed that the cardiologist had acted ethically. Their overwhelming response was, “No, the patient should have been allowed to die.” We looked into how students applied ethical reasoning to conclude that this outcome was ethically preferred. To explore how the third-year clinical experience might have formed the students’ judgment, we presented the same case to students who were just beginning their third year. Their responses were essentially uniform in recommending intubation.

While there is likely more than one reasonable view in this case, we agree with the physician and the younger medical students that intubation was the ethically appropriate decision and will present an argument for it. But first, we explain the reasoning behind the more advanced medical students’ decision to choose patient autonomy at the expense of beneficence.

II. Medical Ethics Education and the Priority of Autonomy

Beauchamp and Childress’s Principles of Biomedical Ethics, first published in 1979 and now in its 8^th edition, is a significant part of the formal ethics education in medical school.^[2] Students learn an ethical decision-making approach based on respect for four ethical principles: autonomy, beneficence, nonmaleficence, and justice. While Beauchamp and Childress officially afford no prima facie superiority to any principle, the importance of respect for patient autonomy has increased through the editions of their book. For example, early editions of their book opposed the legalization of physician-assisted death compared to recent editions that defended it.^[3] As another example, Beauchamp and Childress make paternalism harder to justify by adding an autonomy-protecting condition to the list of conditions for acceptable paternalism.^[4] Authority, they contend, need not conflict with autonomy—provided the authority is autonomously chosen.^[5] “The main requirement,” they write, “is to respect a particular patient’s or subject’s autonomous choices, whatever they may be.^[6] In the principlism of Beauchamp and Childress, autonomy now seems to have a kind of default priority.^[7] However, the bioethics discourse has strong counternarratives, noting some movement to elevate the role of beneficence and to respect the input of stakeholders, including the family and the healthcare team.

Ethics education achieves particular relevance in the third clinical year when students become embedded in the care of patients and learn from what has been called the informal curriculum. They observe how attending physicians approach day-to-day ethical problems at the patient’s bedside. In this context, students observe the importance of informed consent for serious treatments or invasive procedures, a practice that highlights the principle of patient autonomy.

In both the formal and informal curriculum, medical students observe how, in the words of Paul Wolpe, “patient autonomy has become the central and most powerful principle in ethical decision-making in American medicine.”^[8] In short, students appear to learn a deference for patient autonomy. This curricular shift in favor of autonomy coincides with legal developments that protect patients’ rights and decision-making with respect to their healthcare choices. The priority of autonomy in medicine benefits patients by reflecting their choices and, in some cases, their fundamental liberty.

III. The Practice of Medicine and the Commitment to Beneficence

There are many critiques of the dominant place that autonomy has in biomedical ethics,^[9] especially considering that autonomy seems to be biased toward individualistic, Western, and somewhat American culture-driven values.^[10] In addition, many bioethical dilemmas are cast as a conflict between autonomy and beneficence. Our point is that medical students bring to their study of medicine a commitment to beneficence that seems to be suppressed by practical ethics education. We think this commitment is rationally defensible and should be nurtured.

It is striking that young medical students have a pre-reflective commitment to beneficence at all. For, as we mentioned, it is not just medicine but Western culture generally that prioritizes autonomy in settling ethical dilemmas. In wanting to act for the good of others (rather than simply agreeing to what others want), physicians are already swimming somewhat against the cultural tide.^[11] However, doing so makes sense, given the nature of medicine and the profession of healing. When prospective medical students are asked why they wish to become physicians, the usual answer is some variation on caring for the sick and preventing disease. It is unlikely that a reason to become a physician is to respect a patient’s autonomy.

It would be easy to dismiss medical students’ commitment to beneficence as a mere intuition and contrary to a more reasoned and deliberative approach. Beauchamp and Childress seem to minimize the value of physician intuition, stating that justifications for certain procedures are “…supported by good reasons. They need not rest merely in intuition or feeling.”^[12] Henry Richardson writes that “situational or perceptive intuition…leaves the reasons for decision unarticulated.”^[13] We think this is a crude and rather thin way of understanding intuition. Some bioethicists have defended intuition as essential to the practice of medicine and not something opposed to reason.^[14]

In the case we describe, we believe the ethical justifications s for the patient’s intubation are fundamentally sound: the patient did not have a “do not intubate” order written in the chart, the emergency intubation had not been foreseen, so the patient did not have the opportunity to consent to or reject intubation; the patient had consented to the treatment for his cardiac disease so his consent for intubation could have been assumed;^[15] and the consequences of respecting his autonomy did not justify allowing him to die.^[16] While it is possible to have more than one reasonable view on this case, we think the case for beneficence is strong and certainly should not be dismissed out of hand.

We do not deny that if a patient makes a clearly documented, well-informed decision to forgo intubation that this decision ought to be respected by the physician (even if the physician disagrees with the patient’s decision). But, in this situation, as in many others in the practice of medicine, the patient’s real wishes and preferences are not well-articulated in advance. There are many cases where a physician acts based on what she believes the patient, or the surrogate, would want, sometimes in situations that do not allow much time for reflection. An example might be resuscitation of a newborn at the borderline of viability. In their ethics education, beneficence would mean acting first to save a life. If the patient or surrogate makes an informed decision to the contrary, a beneficent physician respects that autonomous decision.

In the case presented, the patient expressed gratitude to the cardiologist when extubated. But what if he had expressed anger at the physician for violating his autonomy? There are those who could argue that not only was intubation ethically wrong but that the cardiologist put himself in legal jeopardy by his actions (especially if there had been a written refusal applicable to the specific situation). In the example we use, we point out that the cardiologist may not have escaped a lawsuit if the patient had died without intubation. His family, when hearing the circumstances, may have sued for failure to act and dereliction of the cardiologist’s duty to save him. Beyond a potential legal challenge for either action or inaction, there is an overriding ethical question the cardiologist had to address: what course would be most satisfying to his conscience? Would he rather allow a patient to die for fear of recrimination, or act to save his life, regardless of the personal consequences? In the absence of real knowledge about the patient’s considered wishes, it is most reasonable to err on the side of promoting patient well-being.

A physician’s commitment to beneficence is not necessarily a way of undermining a patient’s autonomy. In acting for the patient's good, physicians are also acting on what it is reasonable to believe a patient (or most patients, perhaps) would want, which is obviously connected to what a patient does want. Pellegrino and Thomasma argue that beneficence includes respect for a patient’s autonomy since “the best interests of the patient are intimately linked with their preferences.”^[17] Instead of conceptualizing ethical dilemmas in medicine as conflicts between autonomy and beneficence, it is possible that medical schools could teach students that truly practicing beneficence is a way of valuing patient autonomy, especially when the patient’s wishes are not specific to the situation and are not clearly expressed.

CONCLUSION

It is important for students and practicing physicians to understand the principle of respect for patient autonomy in a pluralistic society that demands personal self-determination. However, the role of the physician as a beneficent healer should not be diminished by this respect for autonomy. Respecting a patient’s autonomy is grounded in and manifested by physician beneficence.^[18] That is, seeking what is good for the patient can only be good if it respects their personhood and dignity.

We propose that a commitment to beneficence, incipient in young medical students, should be developed over time with their other clinical reasoning skills. Such a commitment need not be sacrificed on the altar of patient autonomy. Beneficence needs greater relative moral weight with students as they proceed in their ethics education.

[1] S. Jauhar, “When Doctors Need to Lie,” New York Times, February 22, 2014, https://www.nytimes.com/2014/02/23/opinion/sunday/when-doctors-need-to-lie.html.

[2] T. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY:

Oxford University Press, 2019).

[3] Louise A. Mitchell, “Major Changes in Principles of Biomedical Ethics,” The National Catholic Bioethics Quarterly 14, no. 3 (2014): 459–75, https://doi.org/10.5840/ncbq20141438.

[4] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019), 238.

[5] Beauchamp and Childress, 103.

[6] Beauchamp and Childress, p. 108.

[7] For other accounts that prioritize autonomy, see e.g. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1989), 38–39; R Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (October 2003): 307–12, https://doi.org/10.1136/jme.29.5.307. For examples of critiques of these accounts, see footnote 9.

[8] P. R. Wolpe, “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, p. 43.

[9] V. A. Entwistle et al., “Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships,” Journal of General Internal Medicine 25, no. 7 (July 2010): 741–45; C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law, 1st ed. (Oxford ; Hart Publishing, 2009); O. O’Neill, Autonomy and Trust in Bioethics, The Gifford Lectures, University of Edinburgh 2001 (Cambridge, UK: Cambridge University Press, 2002).

[10] P. Marshall and B. Koenig, “Accounting for Culture in a Globalized Bioethics,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 32, no. 2 (2004): 252–66; R. Fan, “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics 11, no. 3–4 (1997): 309–22.

[11] Arguments stressing the importance of beneficence, as ours does here, certainly approach paternalistic arguments. We set aside the complex issue of paternalism for purposes of this paper and simply note that the principle of beneficence as such does not say anything specifically about acting against the patient’s will. In the case study that focuses this paper, we do not believe the patient’s will or wishes were clearly indicated.

[12] Beauchamp and Childress, Principles of Biomedical Ethics, p. 20, see note 2 above.

[13] H. S. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 25, no. 3 (January 1, 2000): 285–307, p. 287.

[14] H. D. Braude, Intuition in Medicine a Philosophical Defense of Clinical Reasoning (Chicago ; University of Chicago Press, 2012).

[15] R. Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,” The Hastings Center Report 35, no. 2 (2005): 34–44.

[16] M. Schermer, The Different Faces of Autonomy: Patient Autonomy in Ethical Theory and Hospital Practice, vol. 13, Library of Ethics and Applied Philosophy (Dordrecht: Springer Netherlands, 2002).

[17] E. D. Pellegrino and D. C. Thomasma, For the Patient’s Good - the Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), p. 29.

[18] Pellegrino and Thomasma, For the Patient’s Good.

Consciously Choosing Unconsciousness

Yuna Lee — Mon, 11 Mar 2024 00:00:00 +0000

Photo by Olga Kononenko on Unsplash

INTRODUCTION

“Because there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal.” Dr. Timothy Quill, a professor of psychiatry, bioethics, and palliative care concisely articulates an ethical intricacy in end-of-life care. In a Washington Post article titled, “Assisted suicide is controversial, but palliative sedation is legal and offers peace,” the discussion revolves around the ethical challenges encountered by physicians when deciding to employ palliative sedation, particularly when faced with terminal illnesses causing unbearable physical and existential suffering. Palliative sedation is defined as the intentional lowering of awareness towards, and including, unconsciousness for patients with severe and refractory symptoms.[1] While assisted suicide remains embroiled in legal debates, palliative sedation emerges as a legally sanctioned alternative, thereby burdening medical practitioners with a moral quandary; while the boundary between assisted suicide and palliative sedation is arguably blurred, intent seems to distinguish the two choices– both aim to reduce suffering, but palliative sedation does not have death as the goal. This leads to the ethical question on the permissibility of hastening or causing unconsciousness in dying patients, rather than the issue of whether causing death is ethically justifiable. The absence of explicit laws governing palliative sedation places the ethical dilemma squarely on the shoulders of healthcare professionals, who must grapple with the responsibility of determining if palliative sedation is in the best interest of the patient. Evidently, the choice the clinician makes crucially impacts the patient’s quality of life moving forward, demonstrating the far-reaching consequences of palliative sedation in not just individual experiences in healthcare, but in shaping the future of how palliative care is handled. By integrating clinical and neuroscience knowledge, an argument can be made that the optimal clinical decision is reached by considering the subjective value of consciousness for each individual patient, with candor and transparency being the basis of all counseling approaches to prioritize patient advocacy.

ANALYSIS

Drawing on the precedent of assisted suicide, a major concern physicians have when debating the use of palliative sedation is the clause to “do no harm”, a principle fundamental to their profession in healthcare. A paradoxical dilemma arises when reducing the pain of a patient may come at the cost of their consciousness– which is more harmful? Having strict guidelines on when palliative seduction is even an option alleviates some responsibility on the physician to make this choice; the choice of the patient, or informed consent, is preliminary for this therapy.[2] By having the patient aware of the risks, and having that patient decide what state they value more, a physician can base their decision on what “harm” means in relation to the patient’s definition. Of course, there are additional considerations that must be contended with before this assumption can be reliably used, such as the state of mind of the patient when this decision is made, as well as the general consensus that exists among the patient, family, and staff about the therapy’s appropriateness. Another concern then seems to be the actual practice of palliative sedation– what are the side effects and unintended consequences of this therapy? So far, the academic literature seems promising in the accuracy of the therapy; according to a review of 1,807 patients, there is no direct evidence from randomized clinical trials that palliative sedation, when appropriately indicated and correctly used to relieve unbearable suffering, has detrimental effect on the survival of patients with terminal cancer, and can be considered as part of a continuum of palliative care.[3] A more cynical viewpoint should also be considered, however, for the integration of different perspectives, possibilities, and predictions that allow for a comprehensive overview of palliative sedation. One possibility, a prospect unfortunately commonly considered in healthcare, is that palliative sedation can lead to death prematurely. This is where the clinician’s knowledge comes into play, particularly their expertise in the field of neuroscience and the operational definitions of consciousness. Various medications used in palliative care may influence the brain's neurochemistry, impacting consciousness and contributing to the relief of suffering. For instance, benzodiazepines such as midazolam and lorazepam, commonly employed in palliative sedation, act as central nervous system depressants. They enhance the inhibitory effects of the neurotransmitter gamma-aminobutyric acid (GABA), leading to sedation, anxiolysis, and amnesia.[4] The neurological effects of these medications involve modulation of neurotransmitter activity, resulting in a calming effect on the brain. Midazolam, in particular, has a rapid onset of action and a short duration, making it suitable for managing acute distress in terminally ill patients.[5] As these medications induce sedation, they may contribute to the lowering of consciousness levels, while also relieving chronic suffering. Ultimately, it is up to the clinician to use their expertise to not only weigh the possible outcomes of the medications, but to also clearly communicate the potential consequences to the patients in a thoughtful manner.

The doctrine of double effect (DDE) may also help to ameliorate the ethical conundrum of whether practicing palliative sedation is ethically justifiable. In the context of palliative sedation, the application of the doctrine of double effect becomes particularly salient. According to the criteria set by the DDE, the action of administering sedative medications, such as morphine, is deemed morally permissible if certain conditions are met.[6] Firstly, the action itself, providing relief from severe and refractory symptoms through sedation, is not inherently bad—it is morally neutral or, in some cases, considered good due to its intent to alleviate suffering. The primary intention must be the relief of suffering, with the secondary and potentially adverse effect of unconsciousness or hastening death not being the desired outcome but rather an unintended consequence. The DDE thus allows healthcare professionals to navigate the ethical intricacies of palliative sedation by placing a strong emphasis on the intention behind the action. In cases where consciousness is significantly diminished, as is often the case with palliative sedation, the doctrine provides a framework for evaluating the ethical justifiability of the intervention. The principle that the good effect (relief from suffering) must outweigh the potentially adverse effect (unconsciousness or hastening death) ensures a careful and considered approach to decision-making.

The deliberation to use palliative sedation can be framed in the area of the ethics of neuroscience, as the choice to go through with palliative sedation involves the use of clinical decision-making, neuroscience, and ethical considerations related to consciousness.[7] The scientific diagnoses and definitions on how consciousness is perceived and how medications affect consciousness highlights a neuroscientific aspect; the optimal clinical decision-making process involves contemplating this variable value of consciousness. This brings in the ethical dimension, as clinicians must navigate the complexities of respecting individual perspectives and values related to consciousness, which can be influenced by neuroscientific factors such as cognitive functioning, brain health, and subjective experiences.

CONCLUSION

In summary, the ethical considerations surrounding palliative sedation compel clinicians to navigate the nuances of moral responsibility, patient advocacy, and clinical judgment. In the absence of clear legal guidelines, clinicians bear the weight of deciding the appropriateness of palliative sedation, influencing both individual patient experiences and broader palliative care practices. The doctrine of double effect provides a valuable ethical framework, emphasizing intentionality and the delicate balance between relieving suffering and unintended consequences. Ultimately, a patient-centered approach is essential to make the best decisions possible while upholding the principles of beneficence and non-maleficence, ensuring that end-of-life care aligns with the values of each individual patient.

[1] American Academy of Hospice and Palliative Medicine. 2014. “Palliative Sedation | AAHPM.” Directed by AAHPM. 2023. https://aahpm.org/positions/palliative-sedation.

[2] Young et al. 2021. “The Neuroethics of Disorders of Consciousness: A Brief History of Evolving Ideas.” Brain 144 (11): 3291–3310. https://doi.org/10.1093/brain/awab290.

[3] Maltoni et al. 2012. “Palliative Sedation in End-of-Life Care and Survival: A Systematic Review.” Journal of Clinical Oncology 30 (12): 1378–83. https://doi.org/10.1200/jco.2011.37.3795.

[4] Griffin, CE, 3rd et al. 2013. “Benzodiazepine Pharmacology and Central Nervous System-Mediated Effects.” PubMed. https://pubmed.ncbi.nlm.nih.gov/23789008.

[5] Prommer, Eric. 2020. “Midazolam: An Essential Palliative Care Drug.” Palliative Care and Social Practice 14 (January): 263235241989552. https://doi.org/10.1177/2632352419895527.

[6] Takla et al. 2020. “A Conscious Choice: Is It Ethical to Aim for Unconsciousness at the End of Life?” Bioethics 35 (3): 284–91. https://doi.org/10.1111/bioe.12838.

[7] Roskies, Adina. 2002. “Neuroethics for the New Millenium.” Neuron 35 (1): 21–23. https://doi.org/10.1016/s0896-6273(02)00763-8.

Alcohol Exclusion Laws and Its Drawbacks

William Ngo — Tue, 12 Mar 2024 00:00:00 +0000

Photo ID 143764115 © Chris Dorney | Dreamstime.com

INTRODUCTION

Since the repeal of the 18^thAmendment in 1933, alcohol consumption has become prevalent among many Americans. Alcohol intoxication is an increasing contributor to emergency room visits wherein individuals present to the emergency department (ED) in an inebriated state, often with secondary injuries or severe medical co-morbidities related to alcohol poisoning. The ED is a stressful environment with providers working under taxing conditions while triaging difficult cases. Alcohol related visits contribute to this added stress for staff given that intoxicated individuals increase wait times for the ED, use up valuable resources, and have the capacity to act violently towards providers. As one nurse puts it, some intoxicated individuals present with “an aggressive state, perhaps have been in a fight, blood everywhere, careening around the place – it can make things very difficult.”[1] To combat these circumstances, thirty-four States including the District of Columbia have implemented a countermeasure recognized as Alcohol Exclusion Laws (AELs).

AELs reduce or cut insurance coverage of certain visits to the ED if the cause of the visit is due to alcohol intoxication.[2] The vast implementation of this law is derived from the idea of individual decision making, that it is an individual’s choice to consume alcohol, and therefore they hold a personal responsibility for their intoxication. By using insurance coverage as a leverage, the law aims at reducing the number of ED visits relating to alcohol intoxication, saving resources, and deterring irresponsible drinking. While the intention behind AELs aims for positive change, it is unethical to use AELs, a form of financial leverage, to address certain problems within emergency medicine.

ANALYSIS

Stigma is prominent in almost all substance abuse cases including those seen with alcohol intoxication. Many patients feel embarrassment or shame when seeking medical attention for a condition that was brought on by alcohol misuse. A personal account by Jonathan Hunt Glassman, a former alcoholic and NBC contributor, emphasizes on this negative bias. He knows firsthand how unsettling an ED visit can be. He felt demoralized from a superficial prognosis made by a nurse on his complex alcohol abuse condition, in which the nurse said, “You need to stop drinking.”[3]

Whether it be from shame or insecurities about an individual’s condition, the stigma behind substance abuse cases in the emergency department and the daunting task of asking for help can turn a lot of patients away from seeking and receiving medical treatment. The implementation of Alcohol Exclusion Laws can amplify this already present stigma. A study conducted by the National Institute of Health (NIH) analyzed States that implemented and continued to enforce Alcohol Exclusion Laws and the stigma in those states surrounding alcohol-related ED visits. The result from the study showed that AELs correlated with an increase in stigmatization regarding medical attention for alcohol-related incidents, and that AELs “negatively impact people’s willingness to seek medical care after alcohol-related injuries or illnesses.”[4] Both the NIH study and the personal account by Hunt-Glassman go on to show that AELs have the adverse effect of reinforcing the stigma surrounding alcohol cases in the ED. While the idea behind AELs is in good faith, it contributes to the stigma. This contribution ethically challenges the idea that the emergency room is a space where the treatment of injuries is carried out without biases infringing on such medical care. The mission of EDs is to provide medical care to anyone in need. AELs have the effect of discouraging these patients from seeking help with the unintended consequence of doing them harm.

A point of argument for the implementation of AELs is that it is the individual’s choice to be intoxicated and therefore justifiable that an individual receives less insurance coverage for medical expenses from a preventable intoxication. The idea of it being an individual choice to become intoxicated is one of the strongest supports for these exclusion laws. However, it is unjust to assume that all alcohol intoxications come by choice. Instances that disprove this assumption include both the college party scene and bar scene. Spiked drinks significantly increase alcohol concentration and can cause any responsible drinker to become intoxicated without intention or against their will. Additionally, alcoholic beverages served in various social gatherings like those in or around college campuses may not have a clear percentage of alcohol determination. Liquor containing high percentages of alcohol, such as Everclear which contains up to 190 proofs, are often masked by sweeteners and flavorings. Cocktails like these can cause a person to become dangerously intoxicated without their realization or intention. Some may argue that consuming an alcoholic beverage still holds accountability, that the person should be aware of the potential for a tampered drink, and therefore AELs should remain in use to deter this. However, like any law, AELs needs to have defined restrictions and/or exemptions. If the individual choice argument is used in favor for AELs, then how far reaching can the laws be applied? An attorney who specializes in these exclusion laws believes that AELs often offer more ambiguity than clarification when it comes to insurance policy, which leads to further ways insurance claims can be denied.[5]

CONCLUSION

In summary, the idea behind the use of Alcohol Exclusion Laws aims to reduce intoxication cases in the ED, however, there are drawbacks and aspects of this law that challenge the ethics of seeking medical care from the emergency department. The present stigma surrounding going to the ED for alcohol-related emergencies is already prevalent in hospitals across the country. When applying AELs, the present stigma may be magnified and further push the idea that seeking help for alcohol-related emergencies is shameful and embarrassing for patients, and therefore should be punished via financial means. Secondly, one of the main justifications for AELs is the idea that it is a deliberate intention to become intoxicated. It isn’t always the intention of individuals to get drunk when they choose to consume alcohol. There are additional factors that may play a part to exonerate a person’s accountability. It is difficult for people to recall the specifics of a situation when they become intoxicated; in some cases, accountability cannot be determined and the used of AELs can become unjustified. Overall, Alcohol Exclusion Laws try to solve the issue of alcohol incidents in a way that produces more detriment than progress. A method to combat the issue of irresponsible drinking and intoxication in the emergency room within the US should not use AELs and financial leverage as one of its forefronts. In fact, a study that based its findings obtained from the Behavioral Risk Factor Surveillance System nationwide survey that spanned twenty-four years from 1993-2017, showed no real impact on binge drinking or increased alcohol consumption.[6] Given the downsides to AELs and its proven non-significant effects, several States have already repealed their AELs. For all these reasons, it would be beneficial to find an alternate method to address alcohol related issues within healthcare.

[1] Gregory, A. (16 Jun 2014). Nurses say drunk patients should be banned from A&E as ‘waste of resources’ UK: Mirror. https://www.mirror.co.uk/news/uk-news/nurses-say-drunk-patients-should-3706280 ²(Jan 2008).

[2] Alcohol Exclusion Laws. National Highway Traffic Safety Administration. https://www.nhtsa.gov/sites/nhtsa.gov/files/810885.pdf.

[3] Glassman, J.H. (28 Apr 2022). Why don’t alcoholics get prescribed the medication they need?. NBC. https://www.nbcnews.com/think/opinion/alcohol-related-deaths-er-visits-rose-covid-solution-use- rcna26425.

[4] Azagba, S., Ebling, T., Hall, M., (2023). Health claims denial for alcohol intoxication: State laws and structural stigma. Wiley Online Library. https://onlinelibrary.wiley.com/doi/10.1111/acer.15153.

[5] (7 Sep 2021). The Alcohol Exclusion Chart Denied Life Insurance Claim. https://www.lifeinsuranceattorney.com/blog/2021/september/the-alcohol-exclusion-state-chart-denied-life-in/.

[6] Azagba, S., Shan, L., Ebling, T., Wolfson, M., Hall, M., Chaloupka, F., (26 Nov 2022). Does state repeal of alcohol exclusion laws increase problem drinking? National Institutes of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10099925/.

Competence or Experience

Jonathan Tenenbaum — Tue, 12 Mar 2024 00:00:00 +0000

Photo ID 129550171© Katarzyna Bialasiewicz|Dreamstime.com

INTRODUCTION

One night in 2016, I fell sound asleep, then awoke to painkiller-induced, nightmarish hallucinations in the ICU. Despite being unable to identify myself or surroundings, I can clearly remember the discordant beeping of hospital monitors, acrid smell of saline wash, and taste of sickly sweet orange amoxicillin syrup. I was unaware that, the morning after I’d fallen asleep, I’d skied off an unmarked 30-foot cliff, breaking my legs, jaw, eye socket and nose, rupturing my right ear canal, and shattering nearly all of my teeth. Over the years that followed, I was fortunate enough to receive care from skilled, compassionate physicians. This not only allowed me to return to ski racing, but to dream of becoming a surgeon. Having grown older and thus more aware throughout my years as a pediatric patient, I’ve developed a nuanced understanding of what treatment made me feel heard.

In fact, I found the most radically varying aspect of my care to be the degree to which I was addressed as a conscious, capable individual versus an extension of my parents. This is unsurprising as the proper amount of authority lended to pediatric patients persists as highly disputed in bioethics. Over the course of this paper, several perspectives will be considered in order to evaluate the current position of the pediatric patient in medical decision-making. First, the ambiguity of maturity and reactions to pediatric autonomy will be considered through the Mature Minor Doctrine, especially important in the refusal of life-saving therapies. Next, the need for improved pain management, rooted in the misalignment of experienced and perceived pain in pediatric patients. Finally, this paper will prove, through the lenses of communitarianism and mosaic decision-making, the need for a more nuanced approach to pediatric care that structurally accounts for the patient’s voice without neglecting their place within a greater network. Therefore, there exists a great need for a more direct, balanced integration of pediatric patients’ as well as revisiting prevailing notions of where pediatric patients stand in relation to reason and experience.

ANALYSIS

To begin, Fleischman’s Pediatric Ethics opens with an exploration of what makes pediatric bioethics distinct.^[1] Fleischman quickly runs into the most problematic of principles in the treatment of pediatric patients– autonomy. The ethical ambiguity of the degree of autonomy to offer pediatric patients and at what point in their lives is a central point of conflict. Many in favor of expanded authority point to the neurobiological similarity between young adults and late teenagers.^[2] Furthermore, while parents are treated as natural decision-makers for their children, there are several cases of minors facing pressure to undergo medical treatment against their wishes.^[3]^,[4] In response to these concerns, the Mature Minor Doctrine was created, a common law exception to the parental consent requirement. The doctrine allows a minor “to refuse or consent to medical treatment if [they possess] sufficient maturity to understand and appreciate the benefits and risks of the proposed medical treatment.”^[5] The doctrine has spurred extensive and impassioned bioethical discourse, especially in relation to the refusal of life-saving therapies.

In “Health Care Decisionmaking by Children'', Ross draws a clear distinction between the notion of competence, often cited in psychological justifications of the Mature Minor Doctrine, and sound judgment.^[6] Her points against child liberationists can be simplified as follows: (a) children need time to develop virtues that preserve their life-time autonomy versus their present-day autonomy, (b) pediatric patients possess “limited world experience and so [their] decisions are not part of a well-conceived life plan,”^[7] and (c) it serves parents and children alike for parents to make decisions in line with their view of a good life. I find all three points convincing, but each of them to be uniquely rooted in this same, critical lack of experience possessed by pediatric patients. I can attest to this. There were times where I suffered so desperately that I longed for relief by any means. I even told my mother that I was content only hearing out of one ear, willing to do anything to prevent another surgery. Now, I am fearful to imagine a world where, at my lowest, I had full autonomy.

Hence, the broad aversion to expanded pediatric autonomy is largely rooted in potential misuse, especially in the possibility of a unilateral, misinformed decision in favor of death via refusal of life-sustaining therapy.^[8]^,[9] Yet, one might argue, the desire for death has concrete rationale beyond lack of life experience— pain and suffering. As Foley describes, “The public's fear of pain and the media's portrayal that physician-assisted suicide and euthanasia are the only reliable options for pain relief… demand that health care delivery systems commit their efforts to improve pain relief at an institutional level.”^[10] Indeed, the issue of insufficient pain management is all too common in pediatrics. One study comparing postoperative pain assessments surveyed 307 patients, 207 of whom were verbal. Across the board, nurses’ pain estimations produced significantly lower pain scores than parents and children, and were consistently closer to estimated pain scores of independent observers.^[11] In another study, a total of 356 nurses across 22 Japanese PICUs were surveyed, and despite possessing a median of 4 years of experience, a mere 32.6% expressed confidence in their ability to accurately assess pain.^[12] It is alarming and telling that even in verbal pediatric patients, pain is significantly underestimated by medical personnel, reflecting a real gap in pediatric patient-professional communication. I can, again, personally attest to this. In the children’s ward, I was offered only Tylenol for severe nerve pain in my legs that kept me awake most nights.

Relatedly, the spirited debate in response to the Mature Minor Doctrine is somewhat disproportionate. Despite the suggestion of various commentators that the law broadly recognizes the doctrine or that states are trending in its direction, only eight states have adopted a mature minor exception, and even these states condition this authority greatly.^[13] With this in mind, a crucial issue is illuminated– an aversion to the pediatric patient voice altogether. As Flesichman writes, “Children should be informed about the nature of their condition, the proposed treatment plan, and the expected outcome… appropriate to their developmental levels.”^[14] Hence, it is vital to curtail pediatric autonomy in complex and life-threatening choices, but it is worth seriously considering that the current landscape might excessively minimize or avoid pediatric patients’ expression, merely serving to inform them rather than account for their voice.

The experience that pediatric patients do possess, in the form of knowing their body, past medical experiences, and thus present pain-related needs, is systemically underrepresented. This is a pressing issue. Before considering expansion of the pediatric voice, though, it is first important to consider the manner in which the patient’s capacity is further complicated by their role within a larger community. It is worthwhile explicitly mentioning communitarianism, a prevailing school of thought in modern bioethics, defined by Callahan as “a way of… assum[ing] that human beings are social animals… and whose lives are lived out within deeply penetrating social, political, and cultural institutions and practices.”^[15] Pediatric patients present a uniquely communitarian case as the perspectives of parents and the needs of patients’ families are vital considerations in offering care. The pediatric patient’s role in a larger family unit and community should be kept in focus so long as the well-being of the patient isn’t compromised, such as in potentially life-threatening religious preferences, as the obligation of the physician is, first and foremost, to the patient.

Nonetheless, the status quo demands a more thoughtful and structural accounting of the pediatric voice to ensure that they feel heard and empowered in complex decision-making and regular care alike. Hence, it is necessary to develop and evaluate clinical models and frameworks that directly account for the pediatric voice, that integrate pediatric patients’ input as continuous, regular, and required elements of treatment. For instance, there may be promise in a model similar to that of mosaic decision-making, a means of restoring the capacity of reemergent patients following brain injury. Rather than enabling complete surrogate authority, the model would enable a pediatric patient’s emergent voice to be accommodated but to not “speak beyond its range and capabilities” via group deliberation between surrogate and patient, a medical professional, and a patient advocate.^[16] Opting for such a model would enable the active involvement of pediatric input without excessively empowering the patient in a manner that neglects their communitarian role and lack of experience.

CONCLUSION

In the heated response to the largely unenforced mature minor doctrine, one finds the invaluable and lacking factor of experience in pediatric patients, especially in decisions to withdraw or refuse life-sustaining medical treatments. In this same response, however, one finds a sharp aversion to the pediatric voice, reflected in pervasive under-medication. Deficits in pain management must be addressed to more effectively treat discomfort, an effort bolstered by a more structural accounting of the pediatric voice and thus pain-related needs. Finally, frameworks that regularly involve the pediatric patient perspective while valuing their communitarian importance and lacking experience, such as the mosaic model, hold real promise moving forward.

^[1] Fleischman, Alan. Pediatric Ethics: Protecting the Interests of Children. (Oxford: Oxford University Press, September, 2016), p. 1-16.

^[2] Coleman, Doriane & Rosoff, Philip. “The Legal Authority of Mature Minors to Consent to General Medical Treatment.” (Itasca: American Journal of Pediatrics, March 2013), p. 1.

^[3] Hawkins, Susan. “Protecting the Rights and Interests of Competent Minors in Litigated Medical Treatment Disputes.” (New York: Fordham Law Review, March 1996), p. 1.

^[4] Derish, Melinda & Heuvel, Kathleen. “Mature Minors Should Have the Right to Refuse Life-Sustaining Medical Treatment.” (Boston: The

Journal of Law, Medicine & Ethics, January 2021), p. 1-14.

^[5] Derish, Melinda & Heuvel, Kathleen. “Mature Minors Should Have the Right to Refuse Life-Sustaining Medical Treatment.” p. 7.

^[6] Ross, Lainie. “Health Care Decisionmaking by Children. Is It in Their Best Interest?” (Garrison: The Hastings Center Report, November-December 1997), p. 1-5.

^[7] Ross. “Health Care Decisionmaking by Children''. p. 5.

^[8] Penkower, Jessica. “The Potential Right of Chronically Ill Adolescents to Refuse Life-Saving Medical Treatment - Fatal Misuse of the Mature Minor Doctrine.” (Chicago: DePaul Law Review, 1996), p. 1-8.

^[9] Burk, Josh. “Mature Minors, Medical Choice, and the Constitutional Right to Martyrdom.” (Charlottesville: Virginia Law Review, September 2016), p. 1-15.

^[10] Foley, Kathleen. “Pain Relief Into Practice: Rhetoric Without Reform.” (Alexandria: Journal of Clinical Oncology, 1995), p. 1-3

^[11] Hla et. al. “Perception of Pediatric Pain: A Comparison of Postoperative Pain Assessments Between Child, Parent, Nurse, and Independent Observer.” (Melbourne: Pediatric Anesthesia. 2014) p. 1-5.

^[12] Tsuboi et. al. “Nurses' perception of pediatric pain and pain assessment in the Japanese PICU.” (Tokyo: Pediatrics International, February 2023), p. 1-3, 10-12.

^[13] Coleman, Doriane & Rosoff, Philip. “The Legal Authority of Mature Minors”. p. 1-3.

^[14] Fleischman, Alan. Pediatric Ethics. p. 115.

^[15] Callahan, Daniel. “Principlism and communitarianism.” (Garrison: The Hastings Center Report, October 2003), p. 2.

^[16] Fins, Joseph. “Mosaic Decisionmaking and Reemergent Agency after Severe Brain Injury”. (Cambridge: Cambridge University Press, September 2017), p. 6.

Shifting Paradigms

Amanda Pisciotta — Tue, 12 Mar 2024 00:00:00 +0000

Photo ID 117847165© Mohamad Faizal Ramli|Dreamstime.com

INTRODUCTION

In our cosmic narrative, for centuries we believed the Earth held the universe's center, a belief that shifted with evidence and transformed our understanding of our cosmic place. Correspondingly, paradigms surrounding autism have been shaped by medical assumptions that label it a condition, a disorder, or even a tragedy. Just as our understanding of celestial perceptions evolved, that Earth was not at the center of the universe, it is time for a seismic shift in how we perceive and address autism.

ANALYSIS

Venturing into autism research, we see the prevailing medical paradigm that defines Autism Spectrum Disorder (ASD) as a developmental disability caused by neurological differences.^[1] Social communication, repetitive behaviors, language, movement skills, cognitive abilities, and emotional reactions—all cast as deficits.¹ This narrative, embraced by researchers, medical professionals, and society, serves as the foundation of our current understanding.

Yet, delving deeper unveils a counter-narrative—one not etched by researchers but articulated by those living with autism. This narrative introduces us to the neurodiversity paradigm, a revolutionary lens that sees autism as a part of the rich tapestry of human neurological development, fostering a stable cognitive landscape.^[2] It posits that there is no singular "healthy" brain; and no definitive way of neurocognitive functioning.² Shockingly, although this perspective is more inclusive, portraying autistic people as crucial contributors to humanity, it remains the more controversial model in society.

Contrasting with the classical medical view that treats autism as a disease to be eradicated, the neurodiversity paradigm challenges the notion of normalizing society and underscores the importance of recognizing autism as an advancement. Without it, we would lose invaluable perspectives, strengths in attention to detail, visual perception, creative and artistic talents, mathematical and technical abilities, and expertise in ‘niche’ areas.^[3] Asserting that every form of neurological development holds equal validity, deserving of respect and human rights, the neurodiversity paradigm counters the deficit mindset perpetuated by the traditional medical view.

The repercussions of our medical-centric assumptions extend beyond perception; they infiltrate the very fabric of societal structures. Autism is labeled a disability. But is it autism that disables individuals, or is it the societal environment that excludes and alienates cognitive diversity? The traditional medical model points fingers at individuals, placing the onus on the differently abled person, not the disabling environments.

For example, our societal perspective on disability is largely framed by the medical model, which views disability as an individual problem. According to this model, the disability is located within the person experiencing it—within individuals like me.^[4] For instance, I often find myself becoming excessively overstimulated in places like department stores. The bustling environment—loud, brightly lit, unpredictable, and crowded—is a sensory challenge. Following the medical model attributes my struggle in department stores to a perceived problem with the way my brain processes sensory inputs, attributing it to my autism.

The consequences of the medical model are far-reaching and profound, particularly in shaping our understanding of autism. This perspective places undue blame on those with autism and directs the focus of research toward "curing" autism rather than addressing societal structures that contribute to exclusion and alienation.

One glaring example of this misguided approach is the predominant focus of autism research on finding a cure, as seen in 2020 with a major research theme centered around gene therapies aimed at altering the genetic factors associated with autism-related conditions.^[5] Even influential organizations like Autism Speaks, until 2016, subscribed to the notion of seeking a cure.^[6] Their evolution, acknowledging the need to listen to the lived experiences of autistic individuals, led to a shift in their mission—from searching for a cure to promoting advocacy, support, understanding, and acceptance.⁶

This shift highlights the importance of moving away from the medical model. Instead, we should adopt more inclusive models like the neurodiversity or social model of disability, which are rooted in the idea that neurological differences, including autism, are natural variations of the human brain. Listening to the voices of those with autism and embracing the social model of disability allows us to recognize that disabling factors often reside in societal structures, not within the individuals themselves. This paradigm shift is crucial for fostering an inclusive society that values and accommodates cognitive diversity.

For instance, when we enter the social model of disability—an alternative lens that shifts the blame from the individual to the environment, it views disability not as a characteristic but as an action done to individuals by society⁴. In this model, going to a department store is not a struggle for me because there is something inherently wrong with me, but it is a struggle because the environment around me does not cater to my diverse needs. Imagine if our world, including department stores, were designed with neurodiversity in mind—quiet, dimly lit, predictable, and spacious. Neurodivergent individuals would still be cognitively different, but their surroundings would not disable them.

Adopting the social model of disability would catalyze shifts in research and attitudes toward autism, reflecting the transformative changes observed in the department store examples. Rather than focusing on changing autistic individuals to fit societal norms, the emphasis would shift to enhancing the lives of neurodivergent people by advocating for structural changes in society. This shift aims to foster inclusivity while preserving individuals' authenticity and embracing their unique differences.

Autistic individuals are not seeking a cure for autism because our neurodivergent way of thinking is integral to our identity. Yet, the considerable funding directed toward researching autism's causes for prevention or a "cure" underscores a lack of consideration for our voices in deciding how research funds are utilized. The emphasis on normalization, a cornerstone of the medical model's view of autism, prioritizes societal desires over the well-being of autistic individuals already part of our society. It is imperative to recognize this flaw in research that aims to cure autism, as it risks genetic research for eugenic purposes, necessitating regulation by the autistic community.^[7] Redirecting resources from the pursuit of an unwanted cure to research supporting and empowering autistic people to lead fulfilling lives is essential.

This redirection involves investing in communication research, offering tools such as communication boards, picture exchange communication systems, speech-generating devices, or sign language for nonverbal or speech-challenged autistic individuals, giving them a voice in our society.^[8] Community living research, centered on community inclusion programs, not only provides services but also educates and reinforces accommodations for daily activities such as in schools, workplaces, or even in department stores as stated in the example.^[9] Attention to support services for autistic individuals and their families, including residential and day support programs, respite, recreation, and transportation, is crucial.^[10] A commitment to promoting lifelong support for autistic individuals necessitates advocating for caregiver support, home and community-based services, financial planning resources, and more.¹⁰ Additionally, research aiming to identify qualitative results of adaptation and modification strategies to support inclusive education for autistic students is paramount at school and classroom levels.^[11] Research to improve healthcare quality and the healthcare system for autistic individuals is also essential, as they face shorter lifespans and worse health than non-autistics.^[12] All these research initiatives align with the principles of the social model of disability.

However, as a society that does not follow the social model; the bulk of our understanding of autism is rooted in research driven by medical assumptions and paradigms. In 2022, the United States allocated $306 million to autism research^[13]. However, a considerable portion of this research approaches autism as a problem to be solved.

An examination of a comprehensive study focused on the allocation of NIH autism research funding from 2008 to 2018 reveals a striking trend. In this distribution, 49.7% of the total funds were allocated to treatment development and evaluation, which represented 53.6% of all projects.^[14] This statistic underscores a predominant emphasis on genetic and biological research. However, the goal of such research is not only to understand the underlying reasons for autism so we can cure it. But this research also explores ways of prevention or management of autism through pharmacological treatment or behavioral therapies like intervention or Applied Behavioral Analysis, both of which are intervention models focused on changing the external behaviors of autistic individuals, with the goal of making an autistic person look and act non-autistic.^14,[15]

Contrastingly, only a minimal fraction of NIH funding—9.1%, approximately $225 million out of nearly $2.5 billion dedicated to ASD research—was channeled towards services-related research.¹⁴ This includes critical areas such as improving accessibility and quality of services in the community, characterizing understudied groups, policy development, dissemination, and implementation.¹⁴ This glaring discrepancy highlights a diminished emphasis on services research in funding decisions, revealing an imbalanced focus on biological and risk factor research, aiming to eliminate differences rather than seeking ways to integrate accommodations that allow autistic individuals to authentically express themselves within societal structures.

The consequence of this skewed prioritization is evident in distressing statistics. Autism affects about 1 in 100 children worldwide, and yet 85% of college-educated adults on the autism spectrum face unemployment—twice the rate of their non-autistic peers.^[16]^,[17] 7 out of 10 autistic individuals wrestle with mental health conditions, including anxiety, depression, ADHD, or OCD.^[18] Alarmingly, the suicide rate among autistic individuals is three times higher than the general population.^[19] Similarly, individuals with autism have an average life expectancy of 54 years, a staggering 16 years less than the average age of mortality for the general population.^[20] And we deserve better.

These disheartening realities underscore the urgent need for a paradigm shift in our approach to autism within society. It is crucial to recognize that masking autistic traits is not the optimal outcome for individuals with autism. In fact, hiding autistic traits has been linked to worse mental health outcomes and increased suicidality in autistic adults.¹⁵ Services and support systems are required to enable autistic individuals to lead long, happy, and fulfilling lives while respecting their right to be authentically autistic. Embracing neurodiversity is not only a matter of ethical consideration and benefit for autistic individuals but also cultivates progress, acceptance, and overall societal growth for all.

CONCLUSION

The call for change is clear—we need research initiatives led by autistic individuals, addressing the questions that matter most to the community. We need more autistic individuals in the medical profession to advocate for improvements in the medical perspective. Having only 1% of autistic individuals in the medical profession is no longer enough.^[21] Just as the sun is not the center of our universe, individuals with autism are not a tragedy. They deserve a future built on understanding, inclusion, and support.

^[1] “Signs and Symptoms of Autism Spectrum Disorders.” Centers for Disease Control and Prevention. Last modified, 28 Mar. 2022, www.cdc.gov/ncbddd/autism/signs.html#:~:text=Autism%20spectrum%20disorder%20 (ASD)%20is ,%2C%20moving%2C%20or%20paying%20attention.

^[2] Robinson, John Elder. “What Is Neurodiversity?” Psychology Today, Sussex Publishers, 7 Oct. 2013, www.psychologytoday.com/us/blog/my-life-aspergers/201310/what-is-neurodiversity.

^[3] “Focus on Strengths as Well as Challenges.” Autistica, 17 Oct. 2019, www.autistica.org.uk/news/focus-on-strengths-and-challenges.

^[4] “Office of Developmental Primary Care.” Medical and Social Models of Disability | Office of Developmental Primary Care. Accessed 26 Oct. 2023, https://odpc.ucsf.edu/clinical/patient-centered-care/medical-and-social-models-of-disability.

^[5] “Hot Topics in Autism Research, 2020.” Spectrum, 3 Mar. 2023, www.spectrumnews.org/features/hot-topics-in-autism-research-2020/#:~:text=Gene%20scene,be%20administered%20early%20in%20life.

^[6] “Questions and Answers.” Autism Speaks. Accessed 26 Oct. 2023, www.autismspeaks.org/autism-speaks-questions-answers-facts#:~:text=It%20was%20the%20right%20decision ,research%20for%20the%20autistic%20community.

^[7] “Research.” Autistic Self Advocacy Network, 31 Aug. 2023, autisticadvocacy.org/research.

^[8] “7 Autism Behavior and Communication Strategies.” National University, 23 Sept. 2021, www.nu.edu/blog/7-autism-behavior-and-communication-strategies/#:~:text=Strategy%20%231%3A%20Using%20Communication%20Boards,photographs%2C%20illustrations%2C%20or%20symbols.

^[9] “Inclusion: Ensuring Access for Everyone.” Autism Speaks. Accessed 26 Oct. 2023, www.autismspeaks.org/tool-kit-excerpt/inclusion-ensuring-access-everyone.

^[10] “Support for Family Members.” Autism Speaks. Accessed 26 Oct. 2023, www.autismspeaks.org/autism-support-family-help#:~:text=People%20with%20autism%20and%20the,%2C%20recreation%2C%20transportation%20and%20others.

^[11] Petersson-Bloom, Linda, and Mona Holmqvist. “Strategies in Supporting Inclusive Education for Autistic Students-A Systematic Review of Qualitative Research Results.” Autism & Developmental Language Impairments, U.S. National Library of Medicine, 21 Sept. 2022, www.ncbi.nlm.nih.gov/pmc/articles/PMC9620685/.

^[12] Weir, Elizabeth, et al. “Autistic Adults Have Poorer Quality Healthcare and Worse Health Based on Self-Report Data - Molecular Autism.” BioMed Central, BioMed Central, 26 May 2022, molecularautism.biomedcentral.com/articles/10.1186/s13229-022-00501-w.

^[13] Mikulic, Matej. “Research Funding for Autism by U.S. NIH 2011-2024.” Statista, 2 June 2023, https://www.statista.com/statistics/1237464/autism-research-funding-united-states-by-nih/#:~:text=In%20fiscal%20year%202022%2C%20research,U.S.%20dollars%20back%20in%202016.

^[14] Cervantes, Paige E, et al. “Trends over a Decade in NIH Funding for Autism Spectrum Disorder Services Research.” Journal of Autism and Developmental Disorders, U.S. National Library of Medicine, 10 Oct. 2020, www.ncbi.nlm.nih.gov/pmc/articles/PMC8035332/#:~:text=Funding%20for%20treatment%20development%2Fevaluation ,averaging%20%2410.2%20million%20per%20year.

^[15] For Whose Benefit? - Autistic Self Advocacy Network. Accessed 26 Oct. 2023, https://autisticadvocacy.org/wp-content/uploads/2021/12/ACWP-Ethics-of-Intervention.pdf.

^[16] “Data & Statistics on Autism Spectrum Disorder.” Centers for Disease Control and Prevention. 4 Apr. 2023, www.cdc.gov/ncbddd/autism/data.html.

^[17] Peralta, Paola. “85% of Adults on the Autism Spectrum Are Unemployed - and Hiring Practices May Be to Blame.” Employee Benefit News. 10 Aug. 2023, www.benefitnews.com/news/how-to-create-equitable-workplace-experiences-for-autistic-talent#:~:text=85%25%20of%20adults%20on%20the,practices%20may%20be%20to%20blame.

^[18] “Autism and Mental Health.” Mental Health Foundation. Accessed 26 Oct. 2023, www.mentalhealth.org.uk/explore-mental-health/a-z-topics/autism-and-mental-health#:~:text=Just%20like%20everyone%2C%20autistic%20people ,%2Dcompulsive%20disorder%20 (OCD).

^[19] Welch, Ashley. “Rate of Suicide 3 Times Higher for Autistic People.” Healthline, Healthline Media, 2021, www.healthline.com/health-news/rate-of-suicide-3-times-higher-for-autistic-people.

^[20] Elemy. “Why Do People with Autism Have a Lower Average Lifespan?” Elemy, 2021, https://elemy.wpengine.com/autism/average-lifespan.

^[21] “Doctors with Autism Speak out against Stigma.” Spectrum, 10 Mar. 2023, www.spectrumnews.org/news/doctors-with-autism-speak-out-against-stigma/#:~:text=The%20condition%20is%20typically%20diagnosed ,worry%20they%20will%20be%20stigmatized.

Brain Organoids, the Path Forward?

Ashley Diloreto — Tue, 12 Mar 2024 00:00:00 +0000

Photo by Maxim Berg on Unsplash

INTRODUCTION

The brain is one of the most foundational parts of being human, and we are still learning about what makes humans unique. Advancements in technology have allowed for the creation of miniature brain structures using pluripotent stem cells to mimic the embryonic human brain. These stem cells randomly accumulate into brain-like structures, consisting of tens of millions of cells spanning a few millimeters wide.[1] As brain organogenesis becomes more complex, these models may begin to exhibit consciousness, pain, and sentience. If these organoids become more complex, it is necessary to question the rights of brain organoids and the ethics of working with brain-like structures that begin to mirror our own identities. Overall, brain organoid usage has remarkable benefits that outweigh the negative outcomes. However, there must be continued exploration of the moral ramifications of greater levels of consciousness that brain organoids may exhibit in the future.

ANALYSIS

Knowing whether brain organoids should be used in research requires understanding what constitutes a conscious brain and how to classify a brain organoid. Due to its modeling of a human embryonic brain, it is helpful to explore the ethical considerations researchers should take both currently and as this field of research progresses. This philosophical question concerns the concept of self-identification and what it means to be human. It is also important to explore the levels of autonomy the brain should have due to its core role in how humans define themselves. As brain organogenesis technologies advance and facilitate the development of more complex brain organoids, this question becomes especially relevant. It blurs the line of ethical human subject research and has the power to alter the decisions that the scientific community makes about human-based research. In the brain organoid's current relatively undeveloped state, large bodies of evidence suggest that brain organoids are suitable and viable alternatives for research. Brain organogenesis research aids in various brain-based medical conditions, such as neurodegenerative diseases, developmental disorders, and Zika virus-infected fetuses.[2] Additionally, it allows for an alternative and potentially ethical approach to animal testing in research.[3]

I. Brain Organoids

Brain organoids are created from randomized self-clustering pluripotent stem cells using signaling factors, essentially modeling the human brain during its embryonic stage.[4] These models can aid in the understanding of both brain development and disorders. This includes a more comprehensive understanding of hereditary brain abnormalities, human evolution, neurological diseases, and psychiatric disorders.[5] Brain organoids replicate many features of human brain development during the embryonic stage, both structurally and functionally however, gyrification, cerebral cortex formation, and neuronal wiring are not fully developed.[6] This creates a relatively accurate novel model that is helping forge the field of neuroscience and strives toward a more accurate representation of the human brain.

II. Brain Organoids Deficiencies

Brain organoids provide an innovative way to enhance current neuroscience; however, opposing viewpoints would argue about the brain organoids deficiencies such as the several major differences between organoids and an embryonic brain. Firstly, this includes a lack of vascularization, causing cells to eventually die in the center.[7] Additionally, current methods only allow for the growth of neurons, excluding microglia, endothelial cells, blood cells, and immune cells, further altering an accurate neural environment.[8] Lastly, there is a significant amount of variation between the brain organoids based on the laboratory procedure and stem line used.[9] While brain organoids are excellent models, they are unable to accurately represent the adult human brain, and current research methods introduce a high level of mutations.[10]

III. Benefits of Brain Organoid Research

Brain organoid research should be pursued because it serves as an alternative to animal-based research, helps us understand the differences between hominid-like species, and advances the study of neurodegenerative diseases.[11] Moreover, while the formation of the brain is representative of the human brain, it lacks full complexity, including networking and complete vascularization.[12] This evidence suggests that brain organoids are not yet sentient, making them important replicas and alternatives to animal testing. Modern medicine research routinely uses animals as test subjects which is problematic because animals cannot provide informed consent, and guidelines often focus on harm minimization with little regard for animal welfare as long as it benefits human research.[13] Seeking alternatives, such as the development of brain organoids, could greatly minimize animal suffering and serve as ethical alternatives.

Brain organoids provide a way to study neurological disorders and diseases with a more physiologically accurate model. Currently, in the field of neurodegenerative diseases, many preclinical models fail to accurately represent the diseases they work with.[14] For instance, mouse models of Alzheimer's disease are genetically modified to overexpress high levels of human genetic mutations, however, the Alzheimer's phenotype is not expressed as expected.[15] Therefore, brain organoids have been considered the most ideal model for Alzheimer’s disease because they allow researchers to observe Aβ deposits, Tau tangles, and neuronal degeneration.[16] Brain organoids have been far more accurate representations than both the mice and two-dimensional neuron models.[17] In addition to Alzheimer’s studies, investigations about the Zika virus are better understood by examining the mechanisms in the brain organoids that resulted in microcephaly.[18] These studies more effectively capture the structure of the fetal brain during the first and second trimesters of pregnancy and more efficiently deconstruct the formation of microcephaly through the observation of neural progenitor cells and other cellular structures.[19]

Furthermore, studying brain organoids enhances our understanding of human brain development in comparison to other hominid-like species, such as one of our closest relatives – Neanderthals. It reveals some of the underpinnings of human evolution and the brain-based advantages that gave humans survival advantages over other hominid-like species. Neanderthal brain organoid research has shown that Neanderthal organoids have an irregular "popcorn-like" shape compared to the spherical shape of human brain organoids.[20] The differences in organoid shape suggest contrasts in their neuronal networks, potentially altering social abilities.[21] This research solidifies the role of the NOVA1 gene in socialization and provides further insight into both autism and schizophrenia.[22]

IV. Brain Organoids Consciousness

As technology becomes more advanced, brain organoids may eventually exhibit a higher level of consciousness, intelligence, and sentience. Currently, the use of brain organoids is regulated by the Embryonic/Human Stem Cell Research Oversight Committee (E/HSCRO) due to the stem cells used to generate them.[23] If brain organoids become more complex, ethical considerations will need to be expanded.[24] It can be inferred that researchers currently treat brain organoids similar to animal research, as both have reduced abilities to consent to research, allowing greater research freedom. Recent studies indicate that human cerebral organoids exhibit the same brain neuron connectivity and electroencephalogram (EEG) patterns as those collected from preterm babies.[25] This data supports the idea that brain organoids may eventually experience pain or even basic forms of consciousness.[26]Those in opposition to brain organoid research would argue that research supports the claim that brain organoids have achieved a high level of sentience and that experimental research, even at this stage, may be considered unethical.

Defining the concept of self is crucial for classifying brain organoids and distinguishing the line between ethical and unethical research. Examining how we perceive self allows us to understand how research will be conducted with brain organoids. In Being and Nothingness, Jean-Paul Sartre states that when someone looks at him, it supports the idea of his existence and sense of self.[27] Since the body would need to be seen within the gaze of another person, it also suggests that people would need to have a body to have an existence or an identity. Therefore, while this primitive brain state may have rudimentary consciousness, it does not have true existence due to a lack of a body. This would exclude the regulations imposed on human and animal research and allow for a laissez-faire approach to the research aside from stem cell regulation. In opposition, Schermer argues that “When we give up mind, as if that is even possible, we are nothing and nowhere.”[28] The creation of a brain organoid is the creation of a mind and therefore even the potential creation of the human self. Human research regulations would then be responsible for brain organoids in their more developed states.

CONCLUSION

The use of brain organoids is promising and expands our understanding of the brain and how it is affected by other neurological factors, such as disease or genetics. There are significant benefits in advancing our comprehension of neurodegenerative diseases such as Alzheimer’s, the Zika virus, and its effect on the fetus, and gaining a better understanding of our prehistorical brain evolution and development. Moreover, creating brain organoids is an efficient and potentially ethical alternative to animal testing. However, further research into brain organoids has suggested that there is a baseline level of consciousness that mirrors a human embryo, and there are still deficiencies in brain organoids that don’t perfectly replicate the human brain. Considering the rapidly progressing technology, ethical principles must also be evaluated to determine what it means to be human and where to draw the line of ethical research on more developed brain-like models. Overall, in the current state of brain organoids, researchers should work to harness brain organoids to their fullest potential to further contribute to the fields of neuroscience.

[1] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3; Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y

[2] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3

[3] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707

[4] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y

[5] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3

[6] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3

[7] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3

[8] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3

[9] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3

[10] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653

[11] Chan, W. K., Griffiths, R., Price, D. J., & Mason, J. O. (2020). Cerebral organoids as tools to identify the developmental roots of autism. Molecular autism, 11(1), 58. https://doi.org/10.1186/s13229-020-00360-3

[12] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y

[13] Gerakis, Y. (2019). Hetz, C. Brain organoids: a next step for humanized Alzheimer’s disease models?. Mol Psychiatry 24, 474–478. https://doi.org/10.1038/s41380-018-0343-7

[14] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707

[15] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707

[16] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707

[17] Gerakis, Y. (2019). Hetz, C. Brain organoids: a next step for humanized Alzheimer’s disease models?. Mol Psychiatry 24, 474–478. https://doi.org/10.1038/s41380-018-0343-7

[18] Cohen J. (2018),Neanderthal brain organoids come to life. Science, 360,1284-1284.DOI:10.1126/science.360.6395.1284

[19] Qian, X., Nguyen, H. N., Jacob, F., Song, H., & Ming, G. L. (2017). Using brain organoids to understand Zika virus-induced microcephaly. Development (Cambridge, England), 144(6), 952–957. https://doi.org/10.1242/dev.140707

[20] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653

[21] Cohen J. (2018),Neanderthal brain organoids come to life. Science, 360,1284-1284.DOI:10.1126/science.360.6395.1284

[22] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653

[23] Sartre, Jean Paul. Being and Nothingness, 1943. https://dx.doi.org/10.4324/9780203827123.

[24] Hyun, I., Scharf-Deering, J. C., & Lunshof, J. E. (2020). Ethical issues related to brain organoid research. Brain research, 1732, 146653. https://doi.org/10.1016/j.brainres.2020.146653

[25] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y

[26] Lavazza A. (2020). Human cerebral organoids and consciousness: a double-edged sword. Monash bioethics review, 38(2), 105–128. https://doi.org/10.1007/s40592-020-00116-y

[27] Sartre, Jean Paul. Being and Nothingness, 1943. https://dx.doi.org/10.4324/9780203827123.

[28] Schermer, V. I. (2002). Spirit and psyche: A new paradigm for psychology, psychoanalysis and psychotherapy. Jessica Kingsley Publishers

Protecting Confidentiality in the Digital Ecosystem of Humanitarian Aid

Cara Lewis — Tue, 12 Mar 2024 00:00:00 +0000

Photo by AbsolutVision on Unsplash

INTRODUCTION

Social media, news headlines, and podcasts implicitly and explicitly remind us of the digital misinformation maelstrom we navigate every day to understand the truth of current events. Misinformation feeds off the topics that impact our lives and draw our attention – war, health, politics, identity, fear, and empathy. Misinformation has a digital reach faster and wider than true information based on its nature of novelty and emotional instigation.^[1] It draws from data leakages, twists the truth, incites emotional responses, and can undermine real efforts to protect and aid vulnerable communities. Many of the places and events targeted by misinformation are sites of humanitarian crises such as Gaza, Yamen, and Ukraine among many others. Humanitarian groups conceived to provide relief to vulnerable communities are susceptible to personal harm and impeded aid because the organizational structure is not equipped for misinformation and data security breaches. While propaganda and misinformation did not emerge in the contemporary, their scope, speed, and impact have exponentially increased as the world’s use of digital media for communication developed. The current state of misinformation and data leakages are threats to humanitarian efforts, especially the vital and nuanced task of humanitarian medical aid that now simultaneously relies on the digital information ecosystem.

ANALYSIS

Humanitarian efforts center on the four main principles of humanity, neutrality, impartiality, and operational independence. The United Nations Refugee Agency specifies that ‘humanity’ refers to addressing human suffering wherever it is found to ensure health and respect, ‘neutrality’ is to not engage in political, racial, religious, or ideological controversies, ‘impartiality’ is to provide aid based on need alone without bias and priority, and ‘operational independence’ is to conduct aid autonomous from agendas or actors in sectors such as political, economic, or military.^[2] Medecins Sans Frontieres explicitly states neutrality, impartiality, independence, bearing witness, and accountability in their code of principles. Their statement on medical ethics is much more vague. It aims to “carry out our work with respect for the rules of medical ethics, in particular the duty to provide care without causing harm to individuals or groups. We respect patients’ autonomy, patient confidentiality, and their right to informed consent.”^[3] Confidentiality is mentioned, but in the nondescript sense that could refer to confidentiality outlined in any number of medical ethics contexts.

Three most commonly referred to ethical codes in Western medicine are the Declaration of Helsinki, the Belmont Report, and the Code of the American Medical Association (AMA). The Declaration of Helsinki places confidentiality in the context of research and was written pre-digital age in the 1960s.^[4] The Belmont Report does not mention confidentiality or patient privacy in its summation of medical ethics from 1978.^[5] Lastly, the AMA’s Code of Medical Principles upholds that physicians “shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy within the constraints of the law.”^[6] This AMA principle was adopted in 1957 and revised in 2001, still before the onset of widely accessible digital media. These three medical ethics codes are the standard of Western medicine, and yet they are decades obsolete when facing the harm of digital misinformation and data leakages. Humanitarian aid organizations cannot afford to rely on outdated medical ethical codes amid digital misinformation and data leakages.

Medical humanitarian relief groups such as Medecins Sans Frontiers, the International Medical Corps, the WHO Global Health and Peace Initiative, and the International Committee of the Red Cross, rely on the medical ethics defined in the aforementioned guides in addition to their humanitarian foundation. These codes, while useful, were written prior to the digital age. And, as our methods of communication, medical delivery, and global action have evolved and digitized, the ethics guiding medical practice should be updated to reflect this dramatic change. Humanitarian medical organizations need the digital ecosystem to store metadata for medical services such as patient history, blood type, metrics on locations in need of aid, missing person searches, and funding. The levels of data vulnerable to misconstruction and hacking exist on the personal and organizational levels. Individual providers and the organizational body should prioritize confidentiality. Thus humanitarian medical ethics should adapt to the reality of the digital age to not endanger the populations receiving aid and to not propagate harm.

Misinformation and data leakage can lead to microtargeting, defamation, provider endangerment, and other harms preventing medical service. The European Data Protection Supervisor details how the personal information collected by organizations, such as medical, can be stolen or misconstrued to affect microtargeting, placing individuals in the direct path of echo chambers, digital tracking, and manipulation.^[7] The International Broadcasting Trust released a report in 2018 detailing the extent to which misinformation was impacting the humanitarian aid groups it broadcasts to.^[8] For example, the report shared that rumors spread by right-wing political groups in 2017 falsely circulated that humanitarian groups in the Mediterranean were collaborating with child trafficking rings.^[9] After causing defamation, the right-wing group sent a boat to block and detain the humanitarian group’s search and rescue boat. This was one incident among many where providers and patients were put in harm’s way through misinformation and the misuse of location data. Other disinformation campaigns can be carried out by governments as well; in Syria and Ukraine, the Russian government has been specifically targeting Red ross and White Helmets.^[10] Beneficial medical services cannot be delivered if providers and patients are targeted. In January of 2022, the International Association of the Red Cross was hacked. Approximately 515,000 vulnerable persons’ data was leaked and became inaccessible to the IARC providers.^[11] If an organization cannot protect access to its digital ecosystem, humanitarian medical aid efforts can be rendered ineffective.

Additionally, misinformation and breached data cause the less immediate but more widely impactful harm of distrust. Stakeholders and funding sources can withdraw from supporting medical humanitarian aid organizations. Beneficial medical services cannot be offered if there is no monetary backing. Providers and patients also have their own digital devices and means of communication which can lead to sensitive information being shared online or with non-neutral parties. If a patient cannot trust their provider or the organization a provider acts in the name of, medical services can be refused. Beneficial medical service cannot be conducted if the trust of the patient is compromised by humanitarian groups failing to prioritize patient confidentiality. Confidentiality should be prioritized in humanitarian medical aid to safeguard against the extended harms of data leakage, misinformation, and malintent.

Some critiques may postulate that due to the uniqueness of each community aided by medical humanitarian organizations, over-standardization from rigid ethical codes may occur, that standardization can lead to inflexibility with communities and render aid strategies ineffective. However, the reality is that ethical frameworks make sure that individual actors are not monolithic – they allow for collaboration and joint work. The WHO Global Health and Peace Initiative’s recent adoption of conflict sensitivity, along with other organizations’ additions of similar language, ensure that there is a feedback loop incorporated into the ethical code to mitigate unintended harm. Thus, ethical codes are helping providers to respond in unprecedented situations with consciousness to harm propagation. In events of limited time and of crisis, comprehensive ethical codes are especially beneficial because we rely on habits and pre-established information banks.

CONCLUSION

Humanitarian medical ethics should include a specific guide for confidentiality. Without forethought and the integration of traditional and digital confidentiality as a main tenant, medical humanitarian organizations will continue to act retrospectively. Trust in stakeholder-provider-patient relationships will continue to disintegrate. The current status quo of medical ethics in the humanitarian aid sector poses multiple risks for providers and patients whereas adopting stronger confidentiality language is a tangible step towards the protection of vulnerable communities from the harms of digital misinformation and data leakage.

^[1] Vosoughi, Soroush, Deb Roy, and Sinan Aral. “The Spread of True and False News Online.” Science 359, no. 6380 (2018): 1146–51. https://doi.org/10.1126/science.aap9559.

^[2] “Conflict Sensitivity and the Centrality of Protection.” The Global Portection Cluster , March 2022. https://www.globalprotectioncluster.org/sites/default/files/2023-03/220318_gpc_-_conflict_sens.pdf.

^[3] “Our Charter and Principles.” MEDECINS SANS FRONTIERES - MIDDLE EAST. Accessed December 24, 2023. https://www.msf-me.org/about-us/principles/our-charter-and-principles#:~:text=We%20give%20priority%20to%20those,of%20governments%20or%20warring%20parties.&text=The%20principles%20of%20impartiality%20and%20neutrality%20are%20not%20synonymous%20with%20silence.

^[4] “WMA - The World Medical Association-WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects.” The World Medical Association. Accessed December 24, 2023. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/.

^[5] Office for Human Research Protections (OHRP). “ The Belmont Report.” United States Department of Health and Human Services , September 27, 2022. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html.

^[6] American Medical Association . “The Code .” AMA principles of Medical Ethics. Accessed December 24, 2023. https://code-medical-ethics.ama-assn.org/principles.

^[7] “EDPS Opinion on Online Manipulation and Personal Data .” European Data Protection Supervisor. Accessed December 24, 2023. https://edps.europa.eu/sites/edp/files/publication/18-03-19_online_manipulation_en.pdf.

^[8] Robin. “Faking It: Fake News and How It Impacts on the Charity Sector.” International Broadcasting Trust, March 13, 2020. https://www.ibt.org.uk/reports/faking-it/.

^[9] Reed, B. “Charities Colluding with Traffickers? Fake News.” The Guardian, February 15, 2018. https://www.theguardian.com/global-development/2018/feb/15/charities-aid-agencies-fake-news-says-report.

^[10] Sant, Shannon Van. “Russian Propaganda Is Targeting Aid Workers.” Foreign Policy, August 1, 2022. https://foreignpolicy.com/2022/08/01/russia-disinformation-ukraine-syria-humanitarian-aid-workers/ .

^[11] International Committee of the Red Cross. “Hacking the Data of the World’s Most Vulnerable Is an Outrage.” International Committee of the Red Cross, October 27, 2022. https://www.icrc.org/en/document/hacking-data-outrage.

The United States Healthcare System

Jacob Pollock — Tue, 12 Mar 2024 00:00:00 +0000

INTRODUCTION

Today, United States citizens live in a society guided by a false consciousness.^[1] The presiding culture of the United States (US) has painted a picture – a distorted and surreal mythology – that continues to be admired. This picture is characterized by conservative dogma and intolerance within the political, economic, and ideological spheres of society, leaving individuals unable to ascertain truth. US citizens are provided the inability to see reality for what it is, and instead encouraged to live by a means of pseudo-reality as described by Debord.^[2] As a result, many US institutions, including the prison system and the healthcare system, have become platforms of masked discriminatory and racist practices within today’s world of “colorblindness.” The right to universal health care represents yet another opportunity for US institutions to deploy covert and underlying racist and discriminatory tactics, and continues to remain largely unacknowledged by non-minority citizens of the US, contributing to significantly higher rates of untreated health concerns and concomitant higher death rates in US minority populations.

ANALYSIS

To understand this assertion, it is important to start by examining the ways in which the US prison system acts as a discriminatory and racist institution. Today, African Americans, Hispanics, and other minorities account for roughly 40% of the US population, yet they comprise around 60% of the US’ total incarcerated population.^[3] That is, they are disproportionately represented amongst the incarcerated. To put this in perspective, according to the American Civil Liberties Union, nearly “one in every 15 African American men [become] incarcerated, as opposed to only one in every 106 white men.”^[4] Looking back to the early 1970s when Black Americans were making progress in obtaining civil rights, there was a substantial increase in the number of incarcerated Black individuals, acting as a “stealth counterweight to political and economic progress.”^[5] Thus, prisons were used as a means to suppress the growing success of Black individuals, furthering the disproportionate number of incarcerated minorities.

The prison system is not the only institution within the US that deploys underlying discriminatory, exploitative, and racist tactics towards American minorities. For example, there have been mortgage lending procedures that have “disproportionately exposed minority borrowers to the risky subprime loans that triggered the financial collapse of 2008 and widespread foreclosures in minority communities.”^[6] Also discovered have been numerous obscure tax and insurance policies that have targeted neighborhoods with substantial minority populations.^[7] There are many more examples of US institutions exploiting and discriminating based upon race, yet minority groups cannot simply avoid these tactics; that is, taking out loans and paying taxes can be essential life tasks for most individuals. Thus, as society continues to be governed by a false consciousness, true reality will indefinitely remain uncertain. This becomes clear, as even today there have been minimal studies regarding the exploration of this institutionalized racism.^[8]

As it is clear numerous institutions have and continue to behave in discriminatory ways, it must be considered that the US’ lack of a nationwide right to health insurance represents another means of discrimination based upon race. While at this point in the essay a discussion of the history of slavery within the US may seem extraneous, the lasting effects of slavery continue to play a key role in discrimination towards minorities, contributing to diminished resources for health insurance for minorities in the US. To understand the role of slavery in decreased access to nationwide health insurance, one must come to see the foremost factor as to why individuals do not carry it. That is, “in 2022, 64.2% of uninsured nonelderly adults said they were uninsured because coverage is not affordable, making it the most common reason cited for being uninsured.”^[9] As for the role of long-term effects of slavery, minorities, especially Black Americans, face far greater poverty than their counterparts, predominantly in places where there is a stronger connection to slavery in the past.^[10] Thus, as it is commonly understood the southern half of the US to have experienced the largest impact from slavery, this would indicate the largest impact on poverty struggles as a result of slavery would be in the south. Coincidentally, as one might say, “reflecting geographic variation in income and the availability of public coverage, most uninsured people live in the South.”^[11]

As Black Americans have faced substantial struggles with poverty due to the lasting effects of slavery and previously exploitative southern economies, bearing in mind the primary reason for not carrying health insurance is a lack of funds, it is plain that past discrimination and racism of yesterday has set the stage for wealth and health disparities and discrimination today. That is, the “average wealth of white households in the United States [has become] 13 times as high as that of Black households.”^[12] To further put this problem into context, minorities “made up 45.7% of the nonelderly US population but accounted for 62.3% of the total nonelderly uninsured population.”^[13] Looking at minorities other than Black Americans, the uninsured rate for “nonelderly Hispanic (18.0%) and American Indian and Alaska Native people (19.1%) are more than 2.5 times the uninsured rates for white people (6.6%)”^[14] Moreover, of the uninsured population, most of the 25.6 million nonelderly uninsured adults were from minority groups.^[15]

As posited, Black Americans and other minority groups’ inability to afford health insurance has been created by US citizens themselves, through past legality and support of slavery, leaving lasting effects that have made health insurance unaffordable. In return, some US citizens and their government have failed to remedy the situation, choosing instead to endorse the idea that minorities lack funds to carry health insurance by arguing they are ‘lazy,’ ‘unmotivated,’ or ‘irresponsible.’ In doing so, US citizens have further engaged in the stereotyping of minority groups as inferior through their inability to obtain health insurance. Consequently, through an unfair health insurance access system, US society has maintained a discriminatory attitude towards minority groups. Once there is a determination of a belief of inferiority, a blind eye will indefinitely turn away from discrimination within society’s governance of the false consciousness, leaving its citizens unable to ascertain reality, chiefly developing and supporting their own self interests. Thus, through the contribution and failure to remedy the poverty struggles inflicted on minority groups, including those inflicted on Black Americans largely through the past slavery in the southern US, minority groups, making up 62.3% of all uninsured nonelderly adults, have been made into the problem by society. These individuals have been labeled, ideologically transformed into ‘inferior beings’ per conservative dogma, and thus become further discriminated against with respect to their inability to obtain health insurance in the US.

Considering the ethicality of the lack of a nationwide right to health insurance, one must take the stance of Mill’s Utilitarianism, which revolves around providing the greatest amount of good for the greatest number of people through consequence of action.^[16] First, it is clear by failing to provide a national right to health insurance, the U.S. is leaving indigent, uninsured groups, largely consisting of minorities, to find the means to fund their own insurance. This may contribute to higher and disproportionate crime rates of minority groups out of need for survival and fulfillment of basic human needs; to institutionalized racism; to false ideologies; to stereotypes wrongly placed upon minority groups; and to untreated illness. The resulting human tragedy is seen in myriad situations: minority woman facing high maternal death rates in childbirth, uninsured minority individuals being turned away from hospitals who only take those with insurance, silent suffering and untreated illnesses including high rates of diabetes and heart disease, and more recently, higher death rates and worse outcomes for minorities as a result of the COVID-19 pandemic.^[17]

CONCLUSION

Thus, as the result of a non-existent nationwide right to health insurance, the US is plainly failing to provide the greatest amount of good for the greatest number of people and therefore, per Mill, the failure to provide a national right to health insurance is clearly unethical. The lack of national access for all individuals to health insurance is not only an underlying form of racism and discrimination towards American minorities, but it is unethical as well. To address this, American society must alter its picture of the distorted and surreal reality that has been painted, and shatter its lens of the pseudo-reality that shapes many individuals’ view of the world. That is, there becomes the need for a higher form, or a deeper level, of collective experiential consciousness in order for a symbiotic relationship to occur – a relationship advantageous to all simultaneously – in the biological and sociological realms. Only then can the trend of institutionalized racism and discrimination be broken, and as a part of this, only then can all individuals receive access to health insurance and related healthcare that would improve their quality of life.

^[1] Little, Daniel. “False Consciousness.” False Consciousness, www-personal.umd.umich.edu/~delittle/iess%20false%20consciousness%20V2.htm.

^[2] Debord, Guy. The Society of the Spectacle. Translated by Donald Nicholson-Smith, Zone Books, 1995.

^[3] Harris, Fredrick C., and Robert C. Lieberman. “Racial Inequality After Racism: How Institutions Hold Back African Americans.” Foreign Affairs, vol. 94, no. 2, 2015, pp. 9–20. JSTOR, http://www.jstor.org/stable/24483477.

^[4] Harris, Fredrick C., and Robert C. Lieberman. “Racial Inequality After Racism: How Institutions Hold Back African Americans.”

^[5] Ibid.

^[6] Ibid.

^[7] Ibid.

^[8] Ibid.

^[9] Drake, Patrick, and Jennifer Tolbert. “Key Facts about the Uninsured Population.” KFF, www.kff.org/uninsured/issue-brief/key-facts-about-the-uninsured-population/.

^[10] O’Connell, Heather A. “The Impact of Slavery on Racial Inequality in Poverty in the Contemporary U.S. South.” Social Forces, vol. 90, no. 3, 2012, pp. 713–34. JSTOR, http://www.jstor.org/stable/41682675.

^[11] Drake, Patrick, and Jennifer Tolbert. “Key Facts about the Uninsured Population.”

^[12] Harris, Fredrick C., and Robert C. Lieberman. “Racial Inequality After Racism: How Institutions Hold Back African Americans.

^[13] Drake, Patrick, and Jennifer Tolbert. “Key Facts about the Uninsured Population.”

^[14] Ibid.

^[15] Ibid.

^[16] Mill, John Stuart. Utilitarianism. London, Parker, Son, and Bourn, 1863. Pdf. Retrieved from the Library of Congress, <www.loc.gov/item/11015966/>.

^[17] Tai, Don Bambino Geno, et al. “Disproportionate Impact of Covid-19 on Racial and Ethnic Minority Groups in the United States: A 2021 Update.” Journal of Racial and Ethnic Health Disparities, U.S. National Library of Medicine, Dec. 2022, www.ncbi.nlm.nih.gov/pmc/articles/PMC8513546/#:~:text=Black%2C%20Latinx%2C%20and%20American%20Indian,children%20in%20a%20worrying%20trend.

Autonomy and Its Limits

Maxwell Fry — Tue, 12 Mar 2024 00:00:00 +0000

INTRODUCTION

Medicine is intertwined with promotion of positive health while prioritizing a patient’s diagnosis, prognosis, and treatment. The prioritization of a patient’s needs stems from a branch of morality called biomedical ethics, which focuses on moral principles that arise in healthcare, medical research.^[1] Biomedical ethics serves to provide a framework for addressing complex medical questions while safeguarding the rights, dignity, and well-being of individuals.¹ Often times in healthcare, decisions made by physicians and patients result in beneficence and/or maleficence. Beneficence implies that healthcare professionals and institutions have a moral duty to act in a patient’s best interest by providing positive health outcomes while minimizing harm (maleficence).¹ As a result of biomedical ethics’ emphasis on beneficence and maleficence, healthcare is designed to respect a patient’s needs, beliefs, and decisions. The practice of allowing patients to make their own medical decisions is called autonomy, and it is vital to biomedical ethics because it emphasizes the concerns of the patient.^[2] However, it is difficult to ensure that a person has autonomy over their medical decision-making if they are not fully informed about the circumstances of their health or treatment options.

ANALYSIS

Thus, an important aspect of biomedical ethics is informed consent. Informed consent is a practice in healthcare and research where individuals must voluntarily agree to or decline medical care after being educated about their medical condition.^[3] Informed consent protects an individual’s right to express their beliefs and make educated decisions about their health. Furthermore, there is an important distinction to be made between voluntary consent and informed consent. While informed consent emphasizes that individuals are fully educated and comprehend information about a procedure, voluntary consent maintains that a person must freely and willingly make decisions without any form of pressure or coercion.³ While a patient might be educated or informed about their health, they might not have the power to voluntarily make medical choices. Thus, consent must be both informed and voluntary to ensure that a patient is fully educated while preserving the right to make medical decisions. Without autonomy and (voluntary) informed consent, individuals would be deprived of their freedom to make educated medical choices, leading to interventions that do not align with their wishes or desires. However, autonomy and informed consent also have severe limitations and barriers, specifically when it comes to the informedness gap, cognitive capacity, and underestimation or overestimation of treatment risks.

According to author Onora O’Neill, the informedness gap occurs when patients may not fully understand the complex medical information provided to them by their physician.^[4] The informedness gap is especially prevalent when medical professionals discuss complex procedures or treatments, as the patients may feel overwhelmed by the information and not make truly informed decisions. In addition to the informedness gap, limited cognitive capacity and mental health can hinder effective communication and informed consent.^[5] When patients are unable to provide informed consent due to factors like dementia, mental illness, or unconsciousness, ensuring thorough communication and education becomes extremely challenging.⁴

Additionally, it is important to consider how informed consent is limited by underestimation or overestimation of treatment risks. Patients may be overly optimistic about the success of a treatment or procedure, thereby underestimating the likelihood of complications or adverse outcomes. On the other hand, patients may possess fear and anxiety, causing them to overestimate the effects of treatment. Anxiety can cause a heightened perception of risk, which can lead to refusal of beneficial treatments, despite the presence of objective medical evidence.^[6] Overall, these limitations of informed consent demonstrate that even when a patient is educated about their health, they still might not be fully knowledgeable when making medical decisions. In fact, while patients have the power of autonomy to make medical choices, the limitations of informed consent can have fatal effects. This becomes abundantly clear when looking at the case study of the world-famous musician, Michael Jackson.

Michael Jackson’s death was the result of acute propofol and benzodiazepine intoxication. Propofol and benzodiazepine are extremely powerful medications commonly used for ICU sedation.^[7] Dr. Conrad Murray, Michael Jackson's personal physician, was involved in Jackson’s care leading up to his death and played a central role in the events surrounding it. To briefly summarize the case, Michael Jackson was experiencing chronic insomnia and sought medical treatment after struggling to sleep for months.^[8] Initially, Dr. Murray prescribed conventional anti-anxiety medications to help the artist sleep, but he was unsuccessful in resolving Jackson’s symptoms.⁷ Without coercing the artist, Dr. Murray offered to administer the powerful anesthetics, propofol and benzodiazepine. After Dr. Murray’s brief description of the effects of propofol and benzodiazepine, Jackson voluntarily agreed to this treatment.⁷Initially, the treatment was a success, but Jackson was unaware of the significant toll these sedatives had on his health. On June 25th, 2009, after 2 and a half months of treatment, Jackson experienced severe propofol intoxication, causing him to die from cardiac arrest.^[9]

Clearly, this case highlights how limitations of informed consent, specifically the informedness gap and underestimation of treatment risks, can have fatal consequences. Michael Jackson was granted the autonomy to make medical decisions about treatments for his insomnia, and he was briefly informed that propofol and benzodiazepine are potent sedatives.⁷ However, according to the artist’s family, Jackson wasn’t fully educated about the level of addictivity and long-term ramifications of the drugs he was administered.⁸ The Jackson family cited that while the artist voluntarily agreed to treatment, his chronic sleep deprivation caused him to underestimate the effects of his medication. The family explained that Jackson lacked the mental capacity to make informed decisions about his health.⁸ Perhaps the outcome of this case may have been different if Dr. Murray had fully explored alternatives for treatment or made a thorough effort to fully educate Jackson about the effects of propofol. Additionally, it is difficult to discredit how sleep deprivation hindered Jackson’s ability to make rational decisions about his health.⁸ While it is true that Dr. Murray informed Michael Jackson about the strength of the sedatives he was administered, that doesn’t mean Jackson fully understood the treatment’s consequences or the weight of his decision.

Furthermore, Michael Jackson didn’t suffer from the limitations of informed consent because of his unique status as a celebrity; Jackson is not an exception from the norm. Research suggests that factors such as limited interaction time between patients and physicians causes an informedness gap in about 1 out of every 3 people.^[10] Michael Jackson had the wealth and resources to be informed about his health; he could have employed any doctor to provide his treatment. Yet, the average person does not have the resources to employ their own doctor or be thoroughly educated about their health.¹⁰ If Michael Jackson wasn’t fully informed about his medical condition or treatment, it is likely that the average person is uninformed as well.

CONCLUSION

To put it simply, autonomy and informed consent ensure that individuals can express their personal beliefs while making educated decisions about their health. However, it is crucial to consider the limitations of informed consent such as the informedness gap, cognitive capacity, and misjudgment of treatment risks. How useful is autonomy and informed consent if patients lack the ability to think clearly, logically, and holistically about their health?^[11] The tragic case of Michael Jackson exemplifies how limitations of informed consent have profound consequences. Although Jackson was informed about the risks associated with propofol and voluntarily agreed to his treatment, he was not fully aware of the drug’s long-term ramifications. If healthcare seeks to achieve positive health outcomes, there is an ongoing need for effective communication and patient education to address the limitations of autonomy and informed consent.

[1]Tom L. Beaucham, Standing on Principles: Collected Essay p, European Journal of Health Law 19, no. 5 (2012): 544–51.

[2] Daniel Callahan, “Autonomy: A Moral Good, Not a Moral Obsession,” The Hastings Center Report 14, no. 5 (1984): 40–42, https://doi.org/10.2307/3561098.

[3] Onora O’Neill, “Between Consenting Adults,” Philosophy & Public Affairs 14, no. 3 (1985): 252–77.

[4] Onora O’Neill, “Some Limits of Informed Consent,” Journal of Medical Ethics 29, no. 1 (February 1, 2003): 4–7, https://doi.org/10.1136/jme.29.1.4.

[5] Antoine Aoun, Sibelle Al Hayek, and Flora El Jabbour, “The Need for a New Model of the Physician–Patient Relationship: A Challenge for Modern Medical Practice,” Family Medicine & Primary Care Review 20, no. 4 (2018): 379–84, https://doi.org/10.5114/fmpcr.2018.79351.

[6] Rebecca Dresser. "Sunday Dialogue: Conversations Between Doctor and Patient,” The New York Times, August 25, 2012, sec. Opinion, https://www.nytimes.com/2012/08/26/opinion/sunday/sunday-dialogue-conversations-between-doctor-and-patient.html.

[7] Katherine Harmon, “What Is Propofol--and How Could It Have Killed Michael Jackson?” Scientific American, accessed October 15, 2023, https://www.scientificamerican.com/article/propofol-michael-jackson-doctor/.

[8] “Doctor Is Guilty in Michael Jackson’s Death - The New York Times,” accessed October 15, 2023, https://www.nytimes.com/2011/11/08/us/doctor-found-guilty-in-michael-jacksons-death.html.

[9] B. Lyons, “Medical Manslaughter,” Irish Medical Journal 106, no. 1 (January 2013): 26–27.

[10] D. R. Hansberry et al., “Are We Effectively Informing Patients? A Quantitative Analysis of On-Line Patient Education Resources from the American Society of Neuroradiology,” American Journal of Neuroradiology 35, no. 7 (July 1, 2014): 1270–75, https://doi.org/10.3174/ajnr.A3854.

[11] Rebecca Kukla, “How Do Patients Know?,” Hastings Center Report 37, no. 5 (2007): 27–35.