research writing in the new normal

Advertisement

The “new normal” in education

• Viewpoints/ Controversies
• Published: 24 November 2020
• Volume 51 , pages 3–14, ( 2021 )

Cite this article

• José Augusto Pacheco   ORCID: orcid.org/0000-0003-4623-6898 1  

345k Accesses

47 Citations

5 Altmetric

Explore all metrics

Effects rippling from the Covid 19 emergency include changes in the personal, social, and economic spheres. Are there continuities as well? Based on a literature review (primarily of UNESCO and OECD publications and their critics), the following question is posed: How can one resist the slide into passive technologization and seize the possibility of achieving a responsive, ethical, humane, and international-transformational approach to education? Technologization, while an ongoing and evidently ever-intensifying tendency, is not without its critics, especially those associated with the humanistic tradition in education. This is more apparent now that curriculum is being conceived as a complicated conversation. In a complex and unequal world, the well-being of students requires diverse and even conflicting visions of the world, its problems, and the forms of knowledge we study to address them.

Similar content being viewed by others

Rethinking L1 Education in a Global Era: The Subject in Focus

Assuming the Future: Repurposing Education in a Volatile Age

Thinking Multidimensionally About Ambitious Educational Change

Avoid common mistakes on your manuscript.

From the past, we might find our way to a future unforeclosed by the present (Pinar 2019 , p. 12)

Texts regarding this pandemic’s consequences are appearing at an accelerating pace, with constant coverage by news outlets, as well as philosophical, historical, and sociological reflections by public intellectuals worldwide. Ripples from the current emergency have spread into the personal, social, and economic spheres. But are there continuities as well? Is the pandemic creating a “new normal” in education or simply accenting what has already become normal—an accelerating tendency toward technologization? This tendency presents an important challenge for education, requiring a critical vision of post-Covid-19 curriculum. One must pose an additional question: How can one resist the slide into passive technologization and seize the possibility of achieving a responsive, ethical, humane, and international-transformational approach to education?

The ongoing present

Unpredicted except through science fiction, movie scripts, and novels, the Covid-19 pandemic has changed everyday life, caused wide-scale illness and death, and provoked preventive measures like social distancing, confinement, and school closures. It has struck disproportionately at those who provide essential services and those unable to work remotely; in an already precarious marketplace, unemployment is having terrible consequences. The pandemic is now the chief sign of both globalization and deglobalization, as nations close borders and airports sit empty. There are no departures, no delays. Everything has changed, and no one was prepared. The pandemic has disrupted the flow of time and unraveled what was normal. It is the emergence of an event (think of Badiou 2009 ) that restarts time, creates radical ruptures and imbalances, and brings about a contingency that becomes a new necessity (Žižek 2020 ). Such events question the ongoing present.

The pandemic has reshuffled our needs, which are now based on a new order. Whether of short or medium duration, will it end in a return to the “normal” or move us into an unknown future? Žižek contends that “there is no return to normal, the new ‘normal’ will have to be constructed on the ruins of our old lives, or we will find ourselves in a new barbarism whose signs are already clearly discernible” (Žižek 2020 , p. 3).

Despite public health measures, Gil ( 2020 ) observes that the pandemic has so far generated no physical or spiritual upheaval and no universal awareness of the need to change how we live. Techno-capitalism continues to work, though perhaps not as before. Online sales increase and professionals work from home, thereby creating new digital subjectivities and economies. We will not escape the pull of self-preservation, self-regeneration, and the metamorphosis of capitalism, which will continue its permanent revolution (Wells 2020 ). In adapting subjectivities to the recent demands of digital capitalism, the pandemic can catapult us into an even more thoroughly digitalized space, a trend that artificial intelligence will accelerate. These new subjectivities will exhibit increased capacities for voluntary obedience and programmable functioning abilities, leading to a “new normal” benefiting those who are savvy in software-structured social relationships.

The Covid-19 pandemic has submerged us all in the tsunami-like economies of the Cloud. There is an intensification of the allegro rhythm of adaptation to the Internet of Things (Davies, Beauchamp, Davies, and Price 2019 ). For Latour ( 2020 ), the pandemic has become internalized as an ongoing state of emergency preparing us for the next crisis—climate change—for which we will see just how (un)prepared we are. Along with inequality, climate is one of the most pressing issues of our time (OECD 2019a , 2019b ) and therefore its representation in the curriculum is of public, not just private, interest.

Education both reflects what is now and anticipates what is next, recoding private and public responses to crises. Žižek ( 2020 , p. 117) suggests in this regard that “values and beliefs should not be simply ignored: they play an important role and should be treated as a specific mode of assemblage”. As such, education is (post)human and has its (over)determination by beliefs and values, themselves encoded in technology.

Will the pandemic detoxify our addiction to technology, or will it cement that addiction? Pinar ( 2019 , pp. 14–15) suggests that “this idea—that technological advance can overcome cultural, economic, educational crises—has faded into the background. It is our assumption. Our faith prompts the purchase of new technology and assures we can cure climate change”. While waiting for technology to rescue us, we might also remember to look at ourselves. In this way, the pandemic could be a starting point for a more sustainable environment. An intelligent response to climate change, reactivating the humanistic tradition in education, would reaffirm the right to such an education as a global common good (UNESCO 2015a , p. 10):

This approach emphasizes the inclusion of people who are often subject to discrimination – women and girls, indigenous people, persons with disabilities, migrants, the elderly and people living in countries affected by conflict. It requires an open and flexible approach to learning that is both lifelong and life-wide: an approach that provides the opportunity for all to realize their potential for a sustainable future and a life of dignity”.

Pinar ( 2004 , 2009 , 2019 ) concevies of curriculum as a complicated conversation. Central to that complicated conversation is climate change, which drives the need for education for sustainable development and the grooming of new global citizens with sustainable lifestyles and exemplary environmental custodianship (Marope 2017 ).

The new normal

The pandemic ushers in a “new” normal, in which digitization enforces ways of working and learning. It forces education further into technologization, a development already well underway, fueled by commercialism and the reigning market ideology. Daniel ( 2020 , p. 1) notes that “many institutions had plans to make greater use of technology in teaching, but the outbreak of Covid-19 has meant that changes intended to occur over months or years had to be implemented in a few days”.

Is this “new normal” really new or is it a reiteration of the old?

Digital technologies are the visible face of the immediate changes taking place in society—the commercial society—and schools. The immediate solution to the closure of schools is distance learning, with platforms proliferating and knowledge demoted to information to be exchanged (Koopman 2019 ), like a product, a phenomenon predicted decades ago by Lyotard ( 1984 , pp. 4-5):

Knowledge is and will be produced in order to be sold, it is and will be consumed in order to be valued in a new production: in both cases, the goal is exchange. Knowledge ceases to be an end in itself, it loses its use-value.

Digital technologies and economic rationality based on performance are significant determinants of the commercialization of learning. Moving from physical face-to-face presence to virtual contact (synchronous and asynchronous), the learning space becomes disembodied, virtual not actual, impacting both student learning and the organization of schools, which are no longer buildings but websites. Such change is not only coterminous with the pandemic, as the Education 2030 Agenda (UNESCO 2015b ) testified; preceding that was the Delors Report (Delors 1996 ), which recoded education as lifelong learning that included learning to know, learning to do, learning to be, and learning to live together.

Transnational organizations have specified competences for the 21st century and, in the process, have defined disciplinary and interdisciplinary knowledge that encourages global citizenship, through “the supra curriculum at the global, regional, or international comparative level” (Marope 2017 , p. 10). According to UNESCO ( 2017 ):

While the world may be increasingly interconnected, human rights violations, inequality and poverty still threaten peace and sustainability. Global Citizenship Education (GCED) is UNESCO’s response to these challenges. It works by empowering learners of all ages to understand that these are global, not local issues and to become active promoters of more peaceful, tolerant, inclusive, secure and sustainable societies.

These transnational initiatives have not only acknowledged traditional school subjects but have also shifted the curriculum toward timely topics dedicated to understanding the emergencies of the day (Spiller 2017 ). However, for the OECD ( 2019a ), the “new normal” accentuates two ideas: competence-based education, which includes the knowledges identified in the Delors Report , and a new learning framework structured by digital technologies. The Covid-19 pandemic does not change this logic. Indeed, the interdisciplinary skills framework, content and standardized testing associated with the Programme for International Student Assessment of the OECD has become the most powerful tool for prescribing the curriculum. Educationally, “the universal homogenous ‘state’ exists already. Globalization of standardized testing—the most prominent instance of threatening to restructure schools into technological sites of political socialization, conditioning children for compliance to a universal homogeneous state of mind” (Pinar 2019 , p. 2).

In addition to cognitive and practical skills, this “homogenous state of mind” rests on so-called social and emotional skills in the service of learning to live together, affirming global citizenship, and presumably returning agency to students and teachers (OECD 2019a ). According to Marope ( 2017 , p. 22), “this calls for higher flexibility in curriculum development, and for the need to leave space for curricula interpretation, contextualization, and creativity at the micro level of teachers and classrooms”. Heterogeneity is thus enlisted in the service of both economic homogeneity and disciplinary knowledge. Disciplinary knowledge is presented as universal and endowed with social, moral, and cognitive authority. Operational and effective knowledge becomes central, due to the influence of financial lobbies, thereby ensuring that the logic of the market is brought into the practices of schools. As Pestre ( 2013 , p. 21) observed, “the nature of this knowledge is new: what matters is that it makes hic et nunc the action, its effect and not its understanding”. Its functionality follows (presumably) data and evidence-based management.

A new language is thus imposed on education and the curriculum. Such enforced installation of performative language and Big Data lead to effective and profitable operations in a vast market concerned with competence in operational skills (Lyotard 1984 ). This “new normal” curriculum is said to be more horizontal and less hierarchical and radically polycentric with problem-solving produced through social networks, NGOs, transnational organizations, and think tanks (Pestre 2013 ; Williamson 2013 , 2017 ). Untouched by the pandemic, the “new (old) normal” remains based on disciplinary knowledge and enmeshed in the discourse of standards and accountability in education.

Such enforced commercialism reflects and reinforces economic globalization. Pinar ( 2011 , p. 30) worries that “the globalization of instrumental rationality in education threatens the very existence of education itself”. In his theory, commercialism and the technical instrumentality by which homogenization advances erase education as an embodied experience and the curriculum as a humanistic project. It is a time in which the humanities are devalued as well, as acknowledged by Pinar ( 2019 , p. 19): “In the United States [and in the world] not only does economics replace education—STEM replace the liberal arts as central to the curriculum—there are even politicians who attack the liberal arts as subversive and irrelevant…it can be more precisely characterized as reckless rhetoric of a know-nothing populism”. Replacing in-person dialogical encounters and the educational cultivation of the person (via Bildung and currere ), digital technologies are creating uniformity of learning spaces, in spite of their individualistic tendencies. Of course, education occurs outside schools—and on occasion in schools—but this causal displacement of the centrality of the school implies a devaluation of academic knowledge in the name of diversification of learning spaces.

In society, education, and specifically in the curriculum, the pandemic has brought nothing new but rather has accelerated already existing trends that can be summarized as technologization. Those who can work “remotely” exercise their privilege, since they can exploit an increasingly digital society. They themselves are changed in the process, as their own subjectivities are digitalized, thus predisposing them to a “curriculum of things” (a term coined by Laist ( 2016 ) to describe an object-oriented pedagogical approach), which is organized not around knowledge but information (Koopman 2019 ; Couldry and Mejias 2019 ). This (old) “new normal” was advanced by the OECD, among other international organizations, thus precipitating what some see as “a dynamic and transformative articulation of collective expectations of the purpose, quality, and relevance of education and learning to holistic, inclusive, just, peaceful, and sustainable development, and to the well-being and fulfilment of current and future generations” (Marope 2017 , p. 13). Covid-19, illiberal democracy, economic nationalism, and inaction on climate change, all upend this promise.

Understanding the psychological and cultural complexity of the curriculum is crucial. Without appreciating the infinity of responses students have to what they study, one cannot engage in the complicated conversation that is the curriculum. There must be an affirmation of “not only the individualism of a person’s experience but [of what is] underlining the significance of a person’s response to a course of study that has been designed to ignore individuality in order to buttress nation, religion, ethnicity, family, and gender” (Grumet 2017 , p. 77). Rather than promoting neuroscience as the answer to the problems of curriculum and pedagogy, it is long-past time for rethinking curriculum development and addressing the canonical curriculum question: What knowledge is of most worth from a humanistic perspective that is structured by complicated conversation (UNESCO 2015a ; Pinar 2004 , 2019 )? It promotes respect for diversity and rejection of all forms of (cultural) hegemony, stereotypes, and biases (Pacheco 2009 , 2017 ).

Revisiting the curriculum in the Covid-19 era then expresses the fallacy of the “new normal” but also represents a particular opportunity to promote a different path forward.

Looking to the post-Covid-19 curriculum

Based on the notion of curriculum as a complicated conversation, as proposed by Pinar ( 2004 ), the post-Covid-19 curriculum can seize the possibility of achieving a responsive, ethical, humane education, one which requires a humanistic and internationally aware reconceptualization of curriculum.

While beliefs and values are anchored in social and individual practices (Pinar 2019 , p. 15), education extracts them for critique and reconsideration. For example, freedom and tolerance are not neutral but normative practices, however ideology-free policymakers imagine them to be.

That same sleight-of-hand—value neutrality in the service of a certain normativity—is evident in a digital concept of society as a relationship between humans and non-humans (or posthumans), a relationship not only mediated by but encapsulated within technology: machines interfacing with other machines. This is not merely a technological change, as if it were a quarantined domain severed from society. Technologization is a totalizing digitalization of human experience that includes the structures of society. It is less social than economic, with social bonds now recoded as financial transactions sutured by software. Now that subjectivity is digitalized, the human face has become an exclusively economic one that fabricates the fantasy of rational and free agents—always self-interested—operating in supposedly free markets. Oddly enough, there is no place for a vision of humanistic and internationally aware change. The technological dimension of curriculum is assumed to be the primary area of change, which has been deeply and totally imposed by global standards. The worldwide pandemic supports arguments for imposing forms of control (Žižek 2020 ), including the geolocation of infected people and the suspension—in a state of exception—of civil liberties.

By destroying democracy, the technology of control leads to totalitarianism and barbarism, ending tolerance, difference, and diversity. Remembrance and memory are needed so that historical fascisms (Eley 2020 ) are not repeated, albeit in new disguises (Adorno 2011 ). Technologized education enhances efficiency and ensures uniformity, while presuming objectivity to the detriment of human reflection and singularity. It imposes the running data of the Curriculum of Things and eschews intellectual endeavor, critical attitude, and self-reflexivity.

For those who advocate the primacy of technology and the so-called “free market”, the pandemic represents opportunities not only for profit but also for confirmation of the pervasiveness of human error and proof of the efficiency of the non-human, i.e., the inhuman technology. What may possibly protect children from this inhumanity and their commodification, as human capital, is a humane or humanistic education that contradicts their commodification.

The decontextualized technical vocabulary in use in a market society produces an undifferentiated image in which people are blinded to nuance, distinction, and subtlety. For Pestre, concepts associated with efficiency convey the primacy of economic activity to the exclusion, for instance, of ethics, since those concepts devalue historic (if unrealized) commitments to equality and fraternity by instead emphasizing economic freedom and the autonomy of self-interested individuals. Constructing education as solely economic and technological constitutes a movement toward total efficiency through the installation of uniformity of behavior, devaluing diversity and human creativity.

Erased from the screen is any image of public education as a space of freedom, or as Macdonald ( 1995 , p. 38) holds, any image or concept of “the dignity and integrity of each human”. Instead, what we face is the post-human and the undisputed reign of instrumental reality, where the ends justify the means and human realization is reduced to the consumption of goods and experiences. As Pinar ( 2019 , p. 7) observes: “In the private sphere…. freedom is recast as a choice of consumer goods; in the public sphere, it converts to control and the demand that freedom flourish, so that whatever is profitable can be pursued”. Such “negative” freedom—freedom from constraint—ignores “positive” freedom, which requires us to contemplate—in ethical and spiritual terms—what that freedom is for. To contemplate what freedom is for requires “critical and comprehensive knowledge” (Pestre 2013 , p. 39) not only instrumental and technical knowledge. The humanities and the arts would reoccupy the center of such a curriculum and not be related to its margins (Westbury 2008 ), acknowledging that what is studied within schools is a complicated conversation among those present—including oneself, one’s ancestors, and those yet to be born (Pinar 2004 ).

In an era of unconstrained technologization, the challenge facing the curriculum is coding and STEM (science, technology, engineering, and mathematics), with technology dislodging those subjects related to the human. This is not a classical curriculum (although it could be) but one focused on the emergencies of the moment–namely, climate change, the pandemic, mass migration, right-wing populism, and economic inequality. These timely topics, which in secondary school could be taught as short courses and at the elementary level as thematic units, would be informed by the traditional school subjects (yes, including STEM). Such a reorganization of the curriculum would allow students to see how academic knowledge enables them to understand what is happening to them and their parents in their own regions and globally. Such a cosmopolitan curriculum would prepare children to become citizens not only of their own nations but of the world. This citizenship would simultaneously be subjective and social, singular and universal (Marope 2020 ). Pinar ( 2019 , p. 5) reminds us that “the division between private and public was first blurred then erased by technology”:

No longer public, let alone sacred, morality becomes a matter of privately held values, sometimes monetized as commodities, statements of personal preference, often ornamental, sometimes self-servingly instrumental. Whatever their function, values were to be confined to the private sphere. The public sphere was no longer the civic square but rather, the marketplace, the site where one purchased whatever one valued.

New technological spaces are the universal center for (in)human values. The civic square is now Amazon, Alibaba, Twitter, WeChat, and other global online corporations. The facts of our human condition—a century-old phrase uncanny in its echoes today—can be studied in schools as an interdisciplinary complicated conversation about public issues that eclipse private ones (Pinar 2019 ), including social injustice, inequality, democracy, climate change, refugees, immigrants, and minority groups. Understood as a responsive, ethical, humane and transformational international educational approach, such a post-Covid-19 curriculum could be a “force for social equity, justice, cohesion, stability, and peace” (Marope 2017 , p. 32). “Unchosen” is certainly the adjective describing our obligations now, as we are surrounded by death and dying and threatened by privation or even starvation, as economies collapse and food-supply chains are broken. The pandemic may not mean deglobalization, but it surely accentuates it, as national borders are closed, international travel is suspended, and international trade is impacted by the accompanying economic crisis. On the other hand, economic globalization could return even stronger, as could the globalization of education systems. The “new normal” in education is the technological order—a passive technologization—and its expansion continues uncontested and even accelerated by the pandemic.

Two Greek concepts, kronos and kairos , allow a discussion of contrasts between the quantitative and the qualitative in education. Echoing the ancient notion of kronos are the technologically structured curriculum values of quantity and performance, which are always assessed by a standardized accountability system enforcing an “ideology of achievement”. “While kronos refers to chronological or sequential time, kairos refers to time that might require waiting patiently for a long time or immediate and rapid action; which course of action one chooses will depend on the particular situation” (Lahtinen 2009 , p. 252).

For Macdonald ( 1995 , p. 51), “the central ideology of the schools is the ideology of achievement …[It] is a quantitative ideology, for even to attempt to assess quality must be quantified under this ideology, and the educational process is perceived as a technically monitored quality control process”.

Self-evaluation subjectively internalizes what is useful and in conformity with the techno-economy and its so-called standards, increasingly enforcing technical (software) forms. If recoded as the Internet of Things, this remains a curriculum in allegiance with “order and control” (Doll 2013 , p. 314) School knowledge is reduced to an instrument for economic success, employing compulsory collaboration to ensure group think and conformity. Intertwined with the Internet of Things, technological subjectivity becomes embedded in software, redesigned for effectiveness, i.e., or use-value (as Lyotard predicted).

The Curriculum of Things dominates the Internet, which is simultaneously an object and a thing (see Heidegger 1967 , 1971 , 1977 ), a powerful “technological tool for the process of knowledge building” (Means 2008 , p. 137). Online learning occupies the subjective zone between the “curriculum-as-planned” and the “curriculum-as-lived” (Pinar 2019 , p. 23). The world of the curriculum-as-lived fades, as the screen shifts and children are enmeshed in an ocularcentric system of accountability and instrumentality.

In contrast to kronos , the Greek concept of kairos implies lived time or even slow time (Koepnick 2014 ), time that is “self-reflective” (Macdonald 1995 , p. 103) and autobiographical (Pinar 2009 , 2004), thus inspiring “curriculum improvisation” (Aoki 2011 , p. 375), while emphasizing “the plurality of subjectivities” (Grumet 2017 , p. 80). Kairos emphasizes singularity and acknowledges particularities; it is skeptical of similarities. For Shew ( 2013 , p. 48), “ kairos is that which opens an originary experience—of the divine, perhaps, but also of life or being. Thought as such, kairos as a formative happening—an opportune moment, crisis, circumstance, event—imposes its own sense of measure on time”. So conceived, curriculum can become a complicated conversation that occurs not in chronological time but in its own time. Such dialogue is not neutral, apolitical, or timeless. It focuses on the present and is intrinsically subjective, even in public space, as Pinar ( 2019 , p. 12) writes: “its site is subjectivity as one attunes oneself to what one is experiencing, yes to its immediacy and specificity but also to its situatedness, relatedness, including to what lies beyond it and not only spatially but temporally”.

Kairos is, then, the uniqueness of time that converts curriculum into a complicated conversation, one that includes the subjective reconstruction of learning as a consciousness of everyday life, encouraging the inner activism of quietude and disquietude. Writing about eternity, as an orientation towards the future, Pinar ( 2019 , p. 2) argues that “the second side [the first is contemplation] of such consciousness is immersion in daily life, the activism of quietude – for example, ethical engagement with others”. We add disquietude now, following the work of the Portuguese poet Fernando Pessoa. Disquietude is a moment of eternity: “Sometimes I think I’ll never leave ‘Douradores’ Street. And having written this, it seems to me eternity. Neither pleasure, nor glory, nor power. Freedom, only freedom” (Pesssoa 1991 ).

The disquietude conversation is simultaneously individual and public. It establishes an international space both deglobalized and autonomous, a source of responsive, ethical, and humane encounter. No longer entranced by the distracting dynamic stasis of image-after-image on the screen, the student can face what is his or her emplacement in the physical and natural world, as well as the technological world. The student can become present as a person, here and now, simultaneously historical and timeless.

Conclusions

Slow down and linger should be our motto now. A slogan yes, but it also represents a political, as well as a psychological resistance to the acceleration of time (Berg and Seeber 2016 )—an acceleration that the pandemic has intensified. Covid-19 has moved curriculum online, forcing children physically apart from each other and from their teachers and especially from the in-person dialogical encounters that classrooms can provide. The public space disappears into the pre-designed screen space that software allows, and the machine now becomes the material basis for a curriculum of things, not persons. Like the virus, the pandemic curriculum becomes embedded in devices that technologize our children.

Although one hundred years old, the images created in Modern Times by Charlie Chaplin return, less humorous this time than emblematic of our intensifying subjection to technological necessity. It “would seem to leave us as cogs in the machine, ourselves like moving parts, we keep functioning efficiently, increasing productivity calculating the creative destruction of what is, the human now materialized (de)vices ensnaring us in convenience, connectivity, calculation” (Pinar 2019 , p. 9). Post-human, as many would say.

Technology supports standardized testing and enforces software-designed conformity and never-ending self-evaluation, while all the time erasing lived, embodied experience and intellectual independence. Ignoring the evidence, others are sure that technology can function differently: “Given the potential of information and communication technologies, the teacher should now be a guide who enables learners, from early childhood throughout their learning trajectories, to develop and advance through the constantly expanding maze of knowledge” (UNESCO 2015a , p. 51). Would that it were so.

The canonical question—What knowledge is of most worth?—is open-ended and contentious. In a technologized world, providing for the well-being of children is not obvious, as well-being is embedded in ancient, non-neoliberal visions of the world. “Education is everybody’s business”, Pinar ( 2019 , p. 2) points out, as it fosters “responsible citizenship and solidarity in a global world” (UNESCO 2015a , p. 66), resisting inequality and the exclusion, for example, of migrant groups, refugees, and even those who live below or on the edge of poverty.

In this fast-moving digital world, education needs to be inclusive but not conformist. As the United Nations ( 2015 ) declares, education should ensure inclusive and equitable quality education and promote lifelong learning opportunities for all. “The coming years will be a vital period to save the planet and to achieve sustainable, inclusive human development” (United Nations 2019 , p. 64). Is such sustainable, inclusive human development achievable through technologization? Can technology succeed where religion has failed?

Despite its contradictions and economic emphases, public education has one clear obligation—to create embodied encounters of learning through curriculum conceived as a complicated conversation. Such a conception acknowledges the worldliness of a cosmopolitan curriculum as it affirms the personification of the individual (Pinar 2011 ). As noted by Grumet ( 2017 , p. 89), “as a form of ethics, there is a responsibility to participate in conversation”. Certainly, it is necessary to ask over and over again the canonical curriculum question: What knowledge is of most worth?

If time, technology and teaching are moving images of eternity, curriculum and pedagogy are also, both ‘moving’ and ‘images’ but not an explicit, empirical, or exact representation of eternity…if reality is an endless series of ‘moving images’, the canonical curriculum question—What knowledge is of most worth?—cannot be settled for all time by declaring one set of subjects eternally important” (Pinar 2019 , p. 12).

In a complicated conversation, the curriculum is not a fixed image sliding into a passive technologization. As a “moving image”, the curriculum constitutes a politics of presence, an ongoing expression of subjectivity (Grumet 2017 ) that affirms the infinity of reality: “Shifting one’s attitude from ‘reducing’ complexity to ‘embracing’ what is always already present in relations and interactions may lead to thinking complexly, abiding happily with mystery” (Doll 2012 , p. 172). Describing the dialogical encounter characterizing conceived curriculum, as a complicated conversation, Pinar explains that this moment of dialogue “is not only place-sensitive (perhaps classroom centered) but also within oneself”, because “the educational significance of subject matter is that it enables the student to learn from actual embodied experience, an outcome that cannot always be engineered” (Pinar 2019 , pp. 12–13). Lived experience is not technological. So, “the curriculum of the future is not just a matter of defining content and official knowledge. It is about creating, sculpting, and finessing minds, mentalities, and identities, promoting style of thought about humans, or ‘mashing up’ and ‘making up’ the future of people” (Williamson 2013 , p. 113).

Yes, we need to linger and take time to contemplate the curriculum question. Only in this way will we share what is common and distinctive in our experience of the current pandemic by changing our time and our learning to foreclose on our future. Curriculum conceived as a complicated conversation restarts historical not screen time; it enacts the private and public as distinguishable, not fused in a computer screen. That is the “new normal”.

Adorno, T. W. (2011). Educação e emancipação [Education and emancipation]. São Paulo: Paz e Terra.

Aoki, T. T. (2011). Sonare and videre: A story, three echoes and a lingering note. In W. F. W. Pinar & R. L. Irwin (Eds.), Curriculum in a new key. The collected works of Ted T. Aoki (pp. 368–376). New York, NY: Routledge.

Badiou, A. (2009). Theory of the subject . London: Continuum.

Book   Google Scholar  

Berg, M., & Seeber, B. (2016). The slow professor: Challenging the culture of speed in the academy . Toronto: University of Toronto Press.

Couldry, N., & Mejias, U. (2019). The costs of connection: How data is colonizing human life and appropriating it for capitalism . Stanford, CA: Stanford University Press.

Google Scholar  

Daniel, S. J. (2020). Education and the Covid-19 pandemic. Prospects . https://doi.org/10.1007/s11125-020-09464-3 .

Article   Google Scholar  

Davies, D., Beauchamp, G., Davies, J., & Price, R. (2019). The potential of the ‘Internet of Things’ to enhance inquiry in Singapore schools. Research in Science & Technological Education . https://doi.org/10.1080/02635143.2019.1629896 .

Delors, J. (1996). Learning: The treasure within . Paris: UNESCO.

Doll, W. E. (2012). Thinking complexly. In D. Trueit (Ed.), Pragmatism, post-modernism, and complexity theory: The “fascinating imaginative realm” of William E. Doll, Jr. (pp. 172–187). New York, NY: Routledge.

Doll, W. E. (2013). Curriculum and concepts of control. In W. F. Pinar (Ed.), Curriculum: Toward new identities (pp. 295–324). New York, NY: Routledge.

Eley, G. (2020). Conclusion. In J. A. Thomas & G. Eley (Eds.), Visualizing fascism: The twentieth-century rise of the global Right (pp. 284–292). Durham, NC: Duke University Press.

Chapter   Google Scholar  

Gil, J. (2020). A pandemia e o capitalismo numérico [The pandemic and numerical capitalism]. Público . https://www.publico.pt/2020/04/12/sociedade/ensaio/pandemia-capitalismo-numerico-1911986 .

Grumet, M.G. (2017). The politics of presence. In M. A. Doll (Ed.), The reconceptualization of curriculum studies. A Festschrift in honor of William F. Pinar (pp. 76–83). New York, NY: Routledge.

Heidegger, M. (1967). What is a thing? South Bend, IN: Gateway Editions.

Heidegger, M. (1971). Poetry, language, thought . New York, NY: Harper and Row.

Heidegger, M. (1977). The question concerning technology and other essays . New York, NY: Harper and Row.

Koepnick, L. (2014). On slowness: Toward an aesthetic of the contemporary . New York, NY: Columbia University Press.

Koopman, C. (2019). How we became our data: A genealogy of the informational person . Chicago, IL: University of Chicago Press.

Lahtinen, M. (2009). Politics and curriculum . Leiden: Brill.

Laist, R. (2016). A curriculum of things: Exploring an object-oriented pedagogy. The National Teaching & Learning, 25 (3), 1–4.

Latour, B. (2020). Is this a dress rehearsal? Critical Inquiry . https://critinq.wordpress.com/2020/03/26/is-this-a-dress-rehearsal

Lyotard, J. (1984). The postmodern condition: A report on knowledge . Manchester: Manchester University Press.

Macdonald, B. J. (1995). Theory as a prayerful act . New York, NY: Peter Lang.

Marope, P. T. M. (2017). Reconceptualizing and repositioning curriculum in the 21st century: A global paradigm shift . Geneva: UNESCO IBE.

Marope, P. T. M. (2020). Preventing violent extremism through universal values in curriculum. Prospects, 48 (1), 1–5.

Means, B. (2008). Technology’s role in curriculum and instruction. In F. M. Connelly (Ed.), The Sage handbook of curriculum and instruction (pp. 123–144). Los Angeles, CA: Sage.

OECD (2019a). OECD learning compass 2030 . Paris: OECD.

OECD (2019b). Trends shaping education 2019 . Paris: OECD.

Pacheco, J. A. (2009). Whole, bright, deep with understanding: Life story and politics of curriculum studies. In-between William Pinar and Ivor Goodson . Roterdam/Taipei: Sense Publishers.

Pacheco, J. A. (2017). Pinar’s influence on the consolidation of Portuguese curriculum studies. In M. A. Doll (Ed.), The reconceptualization of curriculum studies. A Festschrift in honor of William F. Pinar (pp. 130–136). New York, NY: Routledge.

Pestre, D. (2013). Science, technologie et société. La politique des savoirs aujourd’hui [Science, technology, and society: Politics of knowledge today]. Paris: Foundation Calouste Gulbenkian.

Pesssoa, F. (1991). The book of disquietude . Manchester: Carcanet Press.

Pinar, W. F. (2004). What is curriculum theory? Mahwah, NJ: Lawrence Erlbaum Associates.

Pinar, W. F. (2009). The worldliness of a cosmopolitan education: Passionate lives in public service . New York, NY: Routledge.

Pinar, W. F. (2011). “A lingering note”: An introduction to the collected work of Ted T. Aoki. In W. F. Pinar & R. L. Irwin (Eds.), Curriculum in a new key. The collected works of Ted T. Aoki (pp. 1–85). New York, NY: Routledge.

Pinar, W. F. (2019). Moving images of eternity: George Grant’s critique of time, teaching, and technology . Ottawa: The University of Ottawa Press.

Shew, M. (2013). The Kairos philosophy. The Journal of Speculative Philosophy, 27 (1), 47–66.

Spiller, P. (2017). Could subjects soon be a thing of the past in Finland? BBC News . https://www.bbc.com/news/world-europe-39889523 .

UNESCO (2015a). Rethinking education. Towards a global common global? Paris: UNESCO.

UNESCO (2015b). Education 2030. Framework for action . Paris: UNESCO. https://www.sdg4education2030.org/sdg-education-2030-steering-committee-resources .

UNESCO (2017). Global citizenship education . Paris: UNESCO. https://en.unesco.org/themes/gced .

United Nations (2015). The sustainable development goals . New York, NY: United Nations.

United Nations (2019). The sustainable development goals report . New York, NY: United Nations.

Wells, W. (2020). Permanent revolution: Reflections on capitalism . Stanford, CA: Stanford University Press.

Westbury, I. (2008). Making curricula. Why do states make curricula, and how? In F. M. Connelly (Ed.), The Sage handbook of curriculum and instruction (pp. 45–65). Los Angeles, CA: Sage.

Williamson, B. (2013). The future of the curriculum. School knowledge in the digital age . Cambridge, MA: MIT Press.

Williamson, B. (2017). Big data in education. The digital future of learning, policy and practice . London: Sage.

Žižek, S. (2020). PANDEMIC! Covid-19 shakes the world . New York, NY: Or Books.

Download references

Author information

Authors and affiliations.

Research Centre on Education (CIEd), Institute of Education, University of Minho, Campus de Gualtar, 4710-057, Braga, Portugal

José Augusto Pacheco

You can also search for this author in PubMed   Google Scholar

Corresponding author

Correspondence to José Augusto Pacheco .

Additional information

Publisher's note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

My thanks to William F. Pinar. Friendship is another moving image of eternity. I am grateful to the anonymous reviewer. This work is financed by national funds through the FCT - Foundation for Science and Technology, under the project PTDC / CED-EDG / 30410/2017, Centre for Research in Education, Institute of Education, University of Minho.

About this article

Pacheco, J.A. The “new normal” in education. Prospects 51 , 3–14 (2021). https://doi.org/10.1007/s11125-020-09521-x

Download citation

Accepted : 23 September 2020

Published : 24 November 2020

Issue Date : October 2021

DOI : https://doi.org/10.1007/s11125-020-09521-x

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Humanistic tradition
• Find a journal
• Publish with us
• Track your research

• Search Menu
• Advance articles
• Editor's Choice
• Supplements
• Author Guidelines
• Submission Site
• Open Access
• About Journal of Public Health
• About the Faculty of Public Health of the Royal Colleges of Physicians of the United Kingdom
• Editorial Board
• Self-Archiving Policy
• Dispatch Dates
• Advertising and Corporate Services
• Journals Career Network
• Journals on Oxford Academic
• Books on Oxford Academic

Article Contents

• < Previous

Adapting to the culture of ‘new normal’: an emerging response to COVID-19

• Article contents
• Figures & tables
• Supplementary Data

Jeff Clyde G Corpuz, Adapting to the culture of ‘new normal’: an emerging response to COVID-19, Journal of Public Health , Volume 43, Issue 2, June 2021, Pages e344–e345, https://doi.org/10.1093/pubmed/fdab057

• Permissions Icon Permissions

A year after COVID-19 pandemic has emerged, we have suddenly been forced to adapt to the ‘new normal’: work-from-home setting, parents home-schooling their children in a new blended learning setting, lockdown and quarantine, and the mandatory wearing of face mask and face shields in public. For many, 2020 has already been earmarked as ‘the worst’ year in the 21st century. Ripples from the current situation have spread into the personal, social, economic and spiritual spheres. Is this new normal really new or is it a reiteration of the old? A recent correspondence published in this journal rightly pointed out the involvement of a ‘supportive’ government, ‘creative’ church and an ‘adaptive’ public in the so-called culture. However, I argue that adapting to the ‘new normal’ can greatly affect the future. I would carefully suggest that we examine the context and the location of culture in which adaptations are needed.

To live in the world is to adapt constantly. A year after COVID-19 pandemic has emerged, we have suddenly been forced to adapt to the ‘new normal’: work-from-home setting, parents home-schooling their children in a new blended learning setting, lockdown and quarantine, and the mandatory wearing of face mask and face shields in public. For many, 2020 has already been earmarked as ‘the worst’ year in the 21st century. 1 Ripples from the current situation have spread into the personal, social, economic and spiritual spheres. Is this new normal really new or is it a reiteration of the old? A recent correspondence published in this journal rightly pointed out the involvement of a ‘supportive’ government, ‘creative’ church and an ‘adaptive’ public in the so-called culture. 2 However, I argue that adapting to the ‘new normal’ can greatly affect the future. I would carefully suggest that we examine the context and the location of culture in which adaptations are needed.

The term ‘new normal’ first appeared during the 2008 financial crisis to refer to the dramatic economic, cultural and social transformations that caused precariousness and social unrest, impacting collective perceptions and individual lifestyles. 3 This term has been used again during the COVID-19 pandemic to point out how it has transformed essential aspects of human life. Cultural theorists argue that there is an interplay between culture and both personal feelings (powerlessness) and information consumption (conspiracy theories) during times of crisis. 4 Nonetheless, it is up to us to adapt to the challenges of current pandemic and similar crises, and whether we respond positively or negatively can greatly affect our personal and social lives. Indeed, there are many lessons we can learn from this crisis that can be used in building a better society. How we open to change will depend our capacity to adapt, to manage resilience in the face of adversity, flexibility and creativity without forcing us to make changes. As long as the world has not found a safe and effective vaccine, we may have to adjust to a new normal as people get back to work, school and a more normal life. As such, ‘we have reached the end of the beginning. New conventions, rituals, images and narratives will no doubt emerge, so there will be more work for cultural sociology before we get to the beginning of the end’. 5

Now, a year after COVID-19, we are starting to see a way to restore health, economies and societies together despite the new coronavirus strain. In the face of global crisis, we need to improvise, adapt and overcome. The new normal is still emerging, so I think that our immediate focus should be to tackle the complex problems that have emerged from the pandemic by highlighting resilience, recovery and restructuring (the new three Rs). The World Health Organization states that ‘recognizing that the virus will be with us for a long time, governments should also use this opportunity to invest in health systems, which can benefit all populations beyond COVID-19, as well as prepare for future public health emergencies’. 6 There may be little to gain from the COVID-19 pandemic, but it is important that the public should keep in mind that no one is being left behind. When the COVID-19 pandemic is over, the best of our new normal will survive to enrich our lives and our work in the future.

No funding was received for this paper.

UNESCO . A year after coronavirus: an inclusive ‘new normal’. https://en.unesco.org/news/year-after-coronavirus-inclusive-new-normal . (12 February 2021, date last accessed) .

Cordero DA . To stop or not to stop ‘culture’: determining the essential behavior of the government, church and public in fighting against COVID-19 . J Public Health (Oxf) 2021 . doi: 10.1093/pubmed/fdab026 .

Google Scholar

El-Erian MA . Navigating the New Normal in Industrial Countries . Washington, D.C. : International Monetary Fund , 2010 .

Google Preview

Alexander JC , Smith P . COVID-19 and symbolic action: global pandemic as code, narrative, and cultural performance . Am J Cult Sociol 2020 ; 8 : 263 – 9 .

Biddlestone M , Green R , Douglas KM . Cultural orientation, power, belief in conspiracy theories, and intentions to reduce the spread of COVID-19 . Br J Soc Psychol 2020 ; 59 ( 3 ): 663 – 73 .

World Health Organization . From the “new normal” to a “new future”: A sustainable response to COVID-19. 13 October 2020 . https: // www.who.int/westernpacific/news/commentaries/detail-hq/from-the-new-normal-to-a-new-future-a-sustainable-response-to-covid-19 . (12 February 2021, date last accessed) .

Email alerts

Citing articles via.

• Recommend to your Library

Affiliations

• Online ISSN 1741-3850
• Print ISSN 1741-3842
• Copyright © 2024 Faculty of Public Health
• About Oxford Academic
• Publish journals with us
• University press partners
• What we publish
• New features  
• Open access
• Institutional account management
• Rights and permissions
• Get help with access
• Accessibility
• Advertising
• Media enquiries
• Oxford University Press
• Oxford Languages
• University of Oxford

Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide

• Copyright © 2024 Oxford University Press
• Cookie settings
• Cookie policy
• Privacy policy
• Legal notice

This Feature Is Available To Subscribers Only

Sign In or Create an Account

This PDF is available to Subscribers Only

For full access to this pdf, sign in to an existing account, or purchase an annual subscription.

Purdue Online Writing Lab Purdue OWL® College of Liberal Arts

Welcome to the Purdue Online Writing Lab

Welcome to the Purdue OWL

This page is brought to you by the OWL at Purdue University. When printing this page, you must include the entire legal notice.

Copyright ©1995-2018 by The Writing Lab & The OWL at Purdue and Purdue University. All rights reserved. This material may not be published, reproduced, broadcast, rewritten, or redistributed without permission. Use of this site constitutes acceptance of our terms and conditions of fair use.

The Online Writing Lab at Purdue University houses writing resources and instructional material, and we provide these as a free service of the Writing Lab at Purdue. Students, members of the community, and users worldwide will find information to assist with many writing projects. Teachers and trainers may use this material for in-class and out-of-class instruction.

The Purdue On-Campus Writing Lab and Purdue Online Writing Lab assist clients in their development as writers—no matter what their skill level—with on-campus consultations, online participation, and community engagement. The Purdue Writing Lab serves the Purdue, West Lafayette, campus and coordinates with local literacy initiatives. The Purdue OWL offers global support through online reference materials and services.

A Message From the Assistant Director of Content Development 

The Purdue OWL® is committed to supporting  students, instructors, and writers by offering a wide range of resources that are developed and revised with them in mind. To do this, the OWL team is always exploring possibilties for a better design, allowing accessibility and user experience to guide our process. As the OWL undergoes some changes, we welcome your feedback and suggestions by email at any time.

Please don't hesitate to contact us via our contact page  if you have any questions or comments.

All the best,

Social Media

Facebook twitter.

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

• View all journals
• Explore content
• About the journal
• Publish with us
• Sign up for alerts
• Published: 06 May 2024

APOE4 homozygozity represents a distinct genetic form of Alzheimer’s disease

• Juan Fortea   ORCID: orcid.org/0000-0002-1340-638X 1 , 2 , 3   na1 ,
• Jordi Pegueroles   ORCID: orcid.org/0000-0002-3554-2446 1 , 2 ,
• Daniel Alcolea   ORCID: orcid.org/0000-0002-3819-3245 1 , 2 ,
• Olivia Belbin   ORCID: orcid.org/0000-0002-6109-6371 1 , 2 ,
• Oriol Dols-Icardo   ORCID: orcid.org/0000-0003-2656-8748 1 , 2 ,
• Lídia Vaqué-Alcázar 1 , 4 ,
• Laura Videla   ORCID: orcid.org/0000-0002-9748-8465 1 , 2 , 3 ,
• Juan Domingo Gispert 5 , 6 , 7 , 8 , 9 ,
• Marc Suárez-Calvet   ORCID: orcid.org/0000-0002-2993-569X 5 , 6 , 7 , 8 , 9 ,
• Sterling C. Johnson   ORCID: orcid.org/0000-0002-8501-545X 10 ,
• Reisa Sperling   ORCID: orcid.org/0000-0003-1535-6133 11 ,
• Alexandre Bejanin   ORCID: orcid.org/0000-0002-9958-0951 1 , 2 ,
• Alberto Lleó   ORCID: orcid.org/0000-0002-2568-5478 1 , 2 &
• Víctor Montal   ORCID: orcid.org/0000-0002-5714-9282 1 , 2 , 12   na1  

Nature Medicine ( 2024 ) Cite this article

13k Accesses

4429 Altmetric

Metrics details

• Alzheimer's disease
• Predictive markers

This study aimed to evaluate the impact of APOE4 homozygosity on Alzheimer’s disease (AD) by examining its clinical, pathological and biomarker changes to see whether APOE4 homozygotes constitute a distinct, genetically determined form of AD. Data from the National Alzheimer’s Coordinating Center and five large cohorts with AD biomarkers were analyzed. The analysis included 3,297 individuals for the pathological study and 10,039 for the clinical study. Findings revealed that almost all APOE4 homozygotes exhibited AD pathology and had significantly higher levels of AD biomarkers from age 55 compared to APOE3 homozygotes. By age 65, nearly all had abnormal amyloid levels in cerebrospinal fluid, and 75% had positive amyloid scans, with the prevalence of these markers increasing with age, indicating near-full penetrance of AD biology in APOE4 homozygotes. The age of symptom onset was earlier in APOE4 homozygotes at 65.1, with a narrower 95% prediction interval than APOE3 homozygotes. The predictability of symptom onset and the sequence of biomarker changes in APOE4 homozygotes mirrored those in autosomal dominant AD and Down syndrome. However, in the dementia stage, there were no differences in amyloid or tau positron emission tomography across haplotypes, despite earlier clinical and biomarker changes. The study concludes that APOE4 homozygotes represent a genetic form of AD, suggesting the need for individualized prevention strategies, clinical trials and treatments.

This is a preview of subscription content, access via your institution

Access options

Access Nature and 54 other Nature Portfolio journals

Get Nature+, our best-value online-access subscription

24,99 € / 30 days

cancel any time

Subscribe to this journal

Receive 12 print issues and online access

195,33 € per year

only 16,28 € per issue

Buy this article

• Purchase on Springer Link
• Instant access to full article PDF

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

Exceptionally low likelihood of Alzheimer’s dementia in APOE2 homozygotes from a 5,000-person neuropathological study

Association of APOE e2 genotype with Alzheimer’s and non-Alzheimer’s neurodegenerative pathologies

Apolipoprotein E and Alzheimer disease: pathobiology and targeting strategies

Data availability.

Access to tabular data from ADNI ( https://adni.loni.usc.edu/ ), OASIS ( https://oasis-brains.org/ ), A4 ( https://ida.loni.usc.edu/collaboration/access/appLicense.jsp ) and NACC ( https://naccdata.org/ ) can be requested online, as publicly available databases. All requests will be reviewed by each studyʼs scientific board. Concrete inquiries to access the WRAP ( https://wrap.wisc.edu/data-requests-2/ ) and ALFA + ( https://www.barcelonabeta.org/en/alfa-study/about-the-alfa-study ) cohort data can be directed to each study team for concept approval and feasibility consultation. Requests will be reviewed to verify whether the request is subject to any intellectual property.

Code availability

All statistical analyses and raw figures were generated using R (v.4.2.2). We used the open-sourced R packages of ggplot2 (v.3.4.3), dplyr (v.1.1.3), ggstream (v.0.1.0), ggpubr (v.0.6), ggstatsplot (v.0.12), Rmisc (v.1.5.1), survival (v.3.5), survminer (v.0.4.9), gtsummary (v.1.7), epitools (v.0.5) and statsExpression (v.1.5.1). Rscripts to replicate our findings can be found at https://gitlab.com/vmontalb/apoe4-asdad (ref. 32 ). For neuroimaging analyses, we used Free Surfer (v.6.0) and ANTs (v.2.4.0).

Bellenguez, C. et al. New insights into the genetic etiology of Alzheimer’s disease and related dementias. Nat. Genet. 54 , 412–436 (2022).

Article   CAS   PubMed   PubMed Central   Google Scholar  

Frisoni, G. B. et al. The probabilistic model of Alzheimer disease: the amyloid hypothesis revised. Nat. Rev. Neurosci. 23 , 53–66 (2022).

Article   CAS   PubMed   Google Scholar  

Bateman R. J. et al. Clinical and biomarker changes in dominantly inherited Alzheimer’s disease. N. Engl. J. Med. 367 , 795–804 (2012).

Genin, E. et al. APOE and Alzheimer disease: a major gene with semidominant inheritance. Mol. Psychiatry 16 , 903–907 (2011).

Fortea, J. et al. Alzheimer’s disease associated with Down syndrome: a genetic form of dementia. Lancet Neurol. 20 , 930–942 (2021).

Fortea, J. et al. Clinical and biomarker changes of Alzheimer’s disease in adults with Down syndrome: a cross-sectional study. Lancet 395 , 1988–1997 (2020).

Jansen, W. J. et al. Prevalence of cerebral amyloid pathology in persons without dementia: a meta-analysis. JAMA 313 , 1924–1938 (2015).

Article   PubMed   PubMed Central   Google Scholar  

Saddiki H. et al. Age and the association between apolipoprotein E genotype and Alzheimer disease: a cerebrospinal fluid biomarker-based case-control study. PLoS Med. https://doi.org/10.1371/JOURNAL.PMED.1003289 (2020).

Jack, C. R. et al. NIA‐AA Research Framework: toward a biological definition of Alzheimer’s disease. Alzheimer’s Dement. 14 , 535–562 (2018).

Article   Google Scholar  

Beekly, D. L. et al. The National Alzheimer’s Coordinating Center (NACC) Database: an Alzheimer disease database. Alzheimer Dis. Assoc. Disord. 18 , 270–277 (2004).

PubMed   Google Scholar  

Montine, T. J. et al. National Institute on Aging–Alzheimer’s Association guidelines for the neuropathologic assessment of Alzheimer’s disease: a practical approach. Acta Neuropathol. 123 , 1–11 (2012).

Reiman, E. M. et al. Exceptionally low likelihood of Alzheimer’s dementia in APOE2 homozygotes from a 5,000-person neuropathological study. Nat. Commun. 11 , 1–11 (2020).

Iulita M. F. et al. Association of Alzheimer disease with life expectancy in people with Down syndrome. JAMA Netw. Open https://doi.org/10.1001/JAMANETWORKOPEN.2022.12910 (2022).

Corder, E. H. et al. Gene dose of apolipoprotein E type 4 allele and the risk of Alzheimer’s disease in late onset families. Science 261 , 921–923 (1993).

Fortea, J., Quiroz, Y. T. & Ryan, N. S. Lessons from Down syndrome and autosomal dominant Alzheimer’s disease. Lancet Neurol. 22 , 5–6 (2023).

Therriault, J. et al. Frequency of biologically defined Alzheimer’s disease in relation to age, sex, APOE ε4, and cognitive impairment. Neurology 96 , e975–e985 (2021).

Betthauser, T. J. et al. Multi-method investigation of factors influencing amyloid onset and impairment in three cohorts. Brain 145 , 4065–4079 (2022).

Snellman, A. et al. APOE ε4 gene dose effect on imaging and blood biomarkers of neuroinflammation and beta-amyloid in cognitively unimpaired elderly. Alzheimers Res. Ther. 15 , 71 (2023).

Ghisays, V. et al. Brain imaging measurements of fibrillar amyloid-β burden, paired helical filament tau burden, and atrophy in cognitively unimpaired persons with two, one, and no copies of the APOE ε4 allele. Alzheimers Dement. 16 , 598–609 (2020).

Mehta, R. I. & Schneider, J. A. What is ‘Alzheimer’s disease’? The neuropathological heterogeneity of clinically defined Alzheimer’s dementia. Curr. Opin. Neurol. 34 , 237–245 (2021).

van der Lee, S. J. et al. The effect of APOE and other common genetic variants on the onset of Alzheimer’s disease and dementia: a community-based cohort study. Lancet Neurol. 17 , 434–444 (2018).

Belloy, M. E., Napolioni, V. & Greicius, M. D. A quarter century of APOE and Alzheimera’s disease: progress to date and the path forward. Neuron 101 , 820–838 (2019).

Belloy, M. E. et al. APOE genotype and Alzheimer disease risk across age, sex, and population ancestry. JAMA Neurol. 80 , 1284–1294 (2023).

Jack, C. R. et al. Long-term associations between amyloid positron emission tomography, sex, apolipoprotein E and incident dementia and mortality among individuals without dementia: hazard ratios and absolute risk. Brain Commun. 4 , fcac017 (2022).

Morris, J. C. The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology 43 , 2412–2414 (1993).

Weiner, M. W. et al. The Alzheimer’s Disease Neuroimaging Initiative 3: continued innovation for clinical trial improvement. Alzheimer’s Dement. 13 , 561–571 (2017).

Sperling R. A. et al. The A4 Study: stopping AD before symptoms begin? Sci. Transl. Med. https://doi.org/10.1126/scitranslmed.3007941 (2014).

Molinuevo, J. L. et al. The ALFA project: a research platform to identify early pathophysiological features of Alzheimer’s disease. Alzheimer’s Dement.: Transl. Res. Clin. Interventions 2 , 82–92 (2016).

Johnson, S. C. et al. The Wisconsin Registry for Alzheimer’s Prevention: a review of findings and current directions. Alzheimer’s Dement.: Diagnosis, Assess. Dis. Monit. 10 , 130–142 (2018).

Google Scholar  

LaMontagne P. J. et al. OASIS-3: longitudinal neuroimaging, clinical and cognitive dataset for normal aging and Alzheimer disease. Preprint at MedRxiv https://doi.org/10.1101/2019.12.13.19014902 (2019).

La Joie, R. et al. Multisite study of the relationships between antemortem [ 11 C]PIB-PET Centiloid values and postmortem measures of Alzheimer’s disease neuropathology. Alzheimers Dement. 15 , 205–216 (2019).

Montal, V. APOE4-ASDAD. GitLab https://gitlab.com/vmontalb/apoe4-asdad (2024).

Download references

Acknowledgements

We acknowledge the contributions of several consortia that provided data for this study. We extend our appreciation to the NACC, the Alzheimer’s Disease Neuroimaging Initiative, The A4 Study, the ALFA Study, the Wisconsin Register for Alzheimer’s Prevention and the OASIS3 Project. Without their dedication to advancing Alzheimer’s disease research and their commitment to data sharing, this study would not have been possible. We also thank all the participants and investigators involved in these consortia for their tireless efforts and invaluable contributions to the field. We also thank the institutions that funded this study, the Fondo de Investigaciones Sanitario, Carlos III Health Institute, the Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas and the Generalitat de Catalunya and La Caixa Foundation, as well as the NIH, Horizon 2020 and the Alzheimer’s Association, which was crucial for this research. Funding: National Institute on Aging. This study was supported by the Fondo de Investigaciones Sanitario, Carlos III Health Institute (INT21/00073, PI20/01473 and PI23/01786 to J.F., CP20/00038, PI22/00307 to A.B., PI22/00456 to M.S.-C., PI18/00435 to D.A., PI20/01330 to A.L.) and the Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas Program 1, partly jointly funded by Fondo Europeo de Desarrollo Regional, Unión Europea, Una Manera de Hacer Europa. This work was also supported by the National Institutes of Health grants (R01 AG056850; R21 AG056974, R01 AG061566, R01 AG081394 and R61AG066543 to J.F., S10 OD025245, P30 AG062715, U54 HD090256, UL1 TR002373, P01 AG036694 and P50 AG005134 to R.S.; R01 AG027161, R01 AG021155, R01 AG037639, R01 AG054059; P50 AG033514 and P30 AG062715 to S.J.) and ADNI (U01 AG024904), the Department de Salut de la Generalitat de Catalunya, Pla Estratègic de Recerca I Innovació en Salut (SLT006/17/00119 to J.F.; SLT002/16/00408 to A.L.) and the A4 Study (R01 AG063689, U24 AG057437 to R.A.S). It was also supported by Fundación Tatiana Pérez de Guzmán el Bueno (IIBSP-DOW-2020-151 o J.F.) and Horizon 2020–Research and Innovation Framework Programme from the European Union (H2020-SC1-BHC-2018-2020 to J.F.; 948677 and 847648 to M.S.-C.). La Caixa Foundation (LCF/PR/GN17/50300004 to M.S.-C.) and EIT Digital (Grant 2021 to J.D.G.) also supported this work. The Alzheimer Association also participated in the funding of this work (AARG-22-923680 to A.B.) and A4/LEARN Study AA15-338729 to R.A.S.). O.D.-I. receives funding from the Alzheimer’s Association (AARF-22-924456) and the Jerome Lejeune Foundation postdoctoral fellowship.

Author information

These authors contributed equally: Juan Fortea, Víctor Montal.

Authors and Affiliations

Sant Pau Memory Unit, Hospital de la Santa Creu i Sant Pau - Biomedical Research Institute Sant Pau, Barcelona, Spain

Juan Fortea, Jordi Pegueroles, Daniel Alcolea, Olivia Belbin, Oriol Dols-Icardo, Lídia Vaqué-Alcázar, Laura Videla, Alexandre Bejanin, Alberto Lleó & Víctor Montal

Centro de Investigación Biomédica en Red de Enfermedades Neurodegenerativas. CIBERNED, Barcelona, Spain

Juan Fortea, Jordi Pegueroles, Daniel Alcolea, Olivia Belbin, Oriol Dols-Icardo, Laura Videla, Alexandre Bejanin, Alberto Lleó & Víctor Montal

Barcelona Down Medical Center, Fundació Catalana Síndrome de Down, Barcelona, Spain

Juan Fortea & Laura Videla

Department of Medicine, Faculty of Medicine and Health Sciences, Institute of Neurosciences, University of Barcelona, Barcelona, Spain

Lídia Vaqué-Alcázar

Barcelonaβeta Brain Research Center (BBRC), Pasqual Maragall Foundation, Barcelona, Spain

Juan Domingo Gispert & Marc Suárez-Calvet

Neurosciences Programme, IMIM - Hospital del Mar Medical Research Institute, Barcelona, Spain

Department of Medicine and Life Sciences, Universitat Pompeu Fabra, Barcelona, Spain

Centro de Investigación Biomédica en Red Bioingeniería, Biomateriales y Nanomedicina. Instituto de Salud carlos III, Madrid, Spain

Centro Nacional de Investigaciones Cardiovasculares (CNIC), Madrid, Spain

Wisconsin Alzheimer’s Disease Research Center, University of Wisconsin-Madison School of Medicine and Public Health, Madison, WI, USA

Sterling C. Johnson

Brigham and Women’s Hospital Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

Reisa Sperling

Barcelona Supercomputing Center, Barcelona, Spain

Víctor Montal

You can also search for this author in PubMed   Google Scholar

Contributions

J.F. and V.M. conceptualized the research project and drafted the initial manuscript. V.M., J.P. and J.F. conducted data analysis, interpreted statistical findings and created visual representations of the data. O.B. and O.D.-I. provided valuable insights into the genetics of APOE. L.V., A.B. and L.V.-A. meticulously reviewed and edited the manuscript for clarity, accuracy and coherence. J.D.G., M.S.-C., S.J. and R.S. played pivotal roles in data acquisition and securing funding. A.L. and D.A. contributed to the study design, offering guidance and feedback on statistical analyses, and provided critical review of the paper. All authors carefully reviewed the manuscript, offering pertinent feedback that enhanced the study’s quality, and ultimately approved the final version.

Corresponding authors

Correspondence to Juan Fortea or Víctor Montal .

Ethics declarations

Competing interests.

S.C.J. has served at scientific advisory boards for ALZPath, Enigma and Roche Diagnostics. M.S.-C. has given lectures in symposia sponsored by Almirall, Eli Lilly, Novo Nordisk, Roche Diagnostics and Roche Farma, received consultancy fees (paid to the institution) from Roche Diagnostics and served on advisory boards of Roche Diagnostics and Grifols. He was granted a project and is a site investigator of a clinical trial (funded to the institution) by Roche Diagnostics. In-kind support for research (to the institution) was received from ADx Neurosciences, Alamar Biosciences, Avid Radiopharmaceuticals, Eli Lilly, Fujirebio, Janssen Research & Development and Roche Diagnostics. J.D.G. has served as consultant for Roche Diagnostics, receives research funding from Hoffmann–La Roche, Roche Diagnostics and GE Healthcare, has given lectures in symposia sponsored by Biogen, Philips Nederlands, Esteve and Life Molecular Imaging and serves on an advisory board for Prothena Biosciences. R.S. has received personal consulting fees from Abbvie, AC Immune, Acumen, Alector, Bristol Myers Squibb, Janssen, Genentech, Ionis and Vaxxinity outside the submitted work. O.B. reported receiving personal fees from Adx NeuroSciences outside the submitted work. D.A. reported receiving personal fees for advisory board services and/or speaker honoraria from Fujirebio-Europe, Roche, Nutricia, Krka Farmacéutica and Esteve, outside the submitted work. A.L. has served as a consultant or on advisory boards for Almirall, Fujirebio-Europe, Grifols, Eisai, Lilly, Novartis, Roche, Biogen and Nutricia, outside the submitted work. J.F. reported receiving personal fees for service on the advisory boards, adjudication committees or speaker honoraria from AC Immune, Adamed, Alzheon, Biogen, Eisai, Esteve, Fujirebio, Ionis, Laboratorios Carnot, Life Molecular Imaging, Lilly, Lundbeck, Perha, Roche and outside the submitted work. O.B., D.A., A.L. and J.F. report holding a patent for markers of synaptopathy in neurodegenerative disease (licensed to Adx, EPI8382175.0). The remaining authors declare no competing interests.

Peer review

Peer review information.

Nature Medicine thanks Naoyuki Sato, Yadong Huang and the other, anonymous, reviewer(s) for their contribution to the peer review of this work. Primary Handling Editor: Jerome Staal, in collaboration with the Nature Medicine team.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information

Supplementary information.

Supplementary Methods, Results, Bibliography, Figs. 1–7 and Tables 1–3.

Reporting Summary

Supplementary code.

This code is also available in the GitLab repository.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Cite this article.

Fortea, J., Pegueroles, J., Alcolea, D. et al. APOE4 homozygozity represents a distinct genetic form of Alzheimer’s disease. Nat Med (2024). https://doi.org/10.1038/s41591-024-02931-w

Download citation

Received : 03 November 2023

Accepted : 19 March 2024

Published : 06 May 2024

DOI : https://doi.org/10.1038/s41591-024-02931-w

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Quick links

• Explore articles by subject
• Guide to authors
• Editorial policies

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Research and Writing Jumpstart

From Tue May 28–Fri, May 31, enjoy morning (10-noon) and/or afternoon (1-3) sessions dedicated to research and writing, available both in-person and via Zoom. Can’t make all 4 days or stay all day? You are still welcome!

Posted in: Research

Brief breaks to share highlights will increase focus and help us all benefit from the sense of being together in the challenge of research and writing. Our program culminates in a hybrid gathering at the week’s end, with lunch provided for in-person participants, providing a valuable chance for participants to share their progress and insights.

As part of the program, we will invite registrants to complete a brief intention-setting worksheet that we will review; in addition, we will offer short 1-1 coaching sessions. Don’t miss this opportunity to advance your research in a supportive, collaborative environment. Coffee and tea will be available throughout the day in the OFE Office.

Daily schedule: 10-12: Morning writing session

12-1: Lunch break 

1-3: Afternoon writing session

Can’t make all 4 days? You are still welcome! Can’t stay all day? You are still welcome!

• Alzheimer's disease & dementia
• Arthritis & Rheumatism
• Attention deficit disorders
• Autism spectrum disorders
• Biomedical technology
• Diseases, Conditions, Syndromes
• Endocrinology & Metabolism
• Gastroenterology
• Gerontology & Geriatrics
• Health informatics
• Inflammatory disorders
• Medical economics
• Medical research
• Medications
• Neuroscience
• Obstetrics & gynaecology
• Oncology & Cancer
• Ophthalmology
• Overweight & Obesity
• Parkinson's & Movement disorders
• Psychology & Psychiatry
• Radiology & Imaging
• Sleep disorders
• Sports medicine & Kinesiology
• Vaccination
• Breast cancer
• Cardiovascular disease
• Chronic obstructive pulmonary disease
• Colon cancer
• Coronary artery disease
• Heart attack
• Heart disease
• High blood pressure
• Kidney disease
• Lung cancer
• Multiple sclerosis
• Myocardial infarction
• Ovarian cancer
• Post traumatic stress disorder
• Rheumatoid arthritis
• Schizophrenia
• Skin cancer
• Type 2 diabetes
• Full List »

share this!

May 13, 2024

This article has been reviewed according to Science X's editorial process and policies . Editors have highlighted the following attributes while ensuring the content's credibility:

fact-checked

Asking adults with obesity about their weight during childhood could help determine their mortality risk

by European Association for the Study of Obesity

Being asked whether you considered yourself a normal weight, plumper or thinner as a child when attending a doctor's appointment as an adult might appear like a very strange question to ask, but new research presented at this year's European Congress on Obesity in Venice, Italy (12–15 May) suggests that such questions can help identify increased mortality risk in adults living with obesity. The study is by Dr. William Johnson, an epidemiology expert based at Loughborough University, UK, and colleagues.

Obesity in adulthood and childhood is a major public health concern. Risk stratification for related diseases might be possible by asking adults simple questions but evidence is lacking to support such a clinical recommendation because most studies do not explicitly test for effect modification of the association of adulthood obesity with outcomes by child weight status.

The aim of this study was to evaluate whether the associations of adulthood overweight and obesity with mortality and incident disease differ according to self-reported child body weight.

The sample comprised 191,181 men and 242,806 women aged 40–69 years at baseline in the UK Biobank prospective cohort study between 2006–10. The outcomes were all-cause mortality and incident cardiovascular disease (CVD), obesity-related cancer, and breast cancer .

The authors measured BMI at baseline (categorized as normal weight, overweight, or living with obesity) and self-reported perceived body weight at age 10 years (about average, thinner, plumper). Computer models were developed, with adjustment for age, ethnicity, relative age voice break (males) or age at beginning periods (females), and comparative height at age 10 years.

The actual question asked to adults living with obesity was: "When you were 10 years old, compared to average, would you describe yourself as: thinner, about average, or plumper?" They were asked this as part of their recruitment into the UK Biobank project between 2006–10. Around half (51%) reported being normal weight, while a third (33%) reported being thinner, and one in six (16%) reported being plumper.

Participants were followed up until an event or: 19 December 2022 for all-cause mortality, 1 September 2023 for incident CVD, and 15 March 2022 for incident obesity-related cancer and breast cancer.

Across the recruited cohort during follow-up 8% died, 35% developed CVD, and 2% of the whole cohort (men and women) developed obesity related cancer—including cancers of the colon, uterus, esophagus, gallbladder, stomach, kidney, pancreas, rectum, thyroid, brain lining (meningioma) and also multiple myeloma. And 5% of women developed breast cancer.

In both sexes, living obesity in adulthood (versus normal weight) was associated with a 15% increased risk of all-cause mortality (death from any cause), whereas living with overweight (versus normal weight) showed no statistically significant relationship.(see link to tables)

For adult men who reported having a normal weight at 10 years old, living with obesity was associated with a 28% (1.28 times) increased risk of all-cause mortality compared to adult men with normal weight.

For men reporting being thinner at age 10, living with obesity as an adult was associated with a 63% (1.63 times) increased risk of all-cause mortality compared to men with normal weight. And for men reporting being 'plumper' at age 10, there was a 45% (1.45 times) increased risk of all-cause mortality for those living with obesity as adults compared to those living with normal weight.

Thus, comparing risk between groups, for adult men living with obesity, compared with those reporting normal weight as children, reporting being plumper at age 10 years was associated with a 13% increased risk of all-cause mortality (1.45 compared to 1.28) (borderline statistical significance), and reporting being thinner as a child was associated with a 28% increased risk of all-cause mortality. (1.63 compared to 1.28) (statistically significant).

For adult women who reported having a normal weight at 10 years old, living with obesity was associated with a 38% (1.38 times) increased risk of all-cause mortality compared to adult women living with normal weight.

For women reporting being thinner at age 10, living with obesity was associated with a 60% (1.6 times) increased risk of all-cause mortality compared with women of normal weight. And for women reporting being plumper at age 10, there was a 32% (1.32 times) increased risk of all-cause mortality for those living with obesity as adults compared to those living with normal weight.

And comparing risk between groups for adult women living with obesity, compared with those reporting normal weight as children, reporting being plumper at age 10 years was not associated with an increased risk of all-cause mortality (1.38 similar to 1.32), whereas reporting being thinner as a child was associated with a 16% increased risk of all-cause mortality (1.60 versus 1.38, statistically significant).

For cardiovascular disease , increased risks were seen for adult men and women living with obesity compared with those living with normal weight , whatever they reported as 10-year-old children, but differences between them were smaller or not statistically significant. For obesity-related cancers, associations were much weaker and mostly not statistically significant.

The authors conclude, "Adulthood overweight and obesity may confer greater risks for all-cause mortality and incident CVD among individuals who perceive themselves to have been a thinner or plumper than the average child. Asking adult patients whether they were about average, thinner, or plumper as a child may help with risk stratification for some, but not all, diseases."

"Of course, regardless of your perceived weight status as a child, it is no surprise that our data show living with obesity as an adult is associated with an increased risk of death and various diseases."

Explore further

Feedback to editors

Study shows derivatives of thalidomide compound drive resistant cancer cells to their deaths

33 minutes ago

Researchers create human aortic aneurysm model to advance disease understanding, treatment testing

46 minutes ago

Sending abortion pills through the mail found to be timely and effective

49 minutes ago

Anti-immigrant political rhetoric and action threaten Latino/a youth mental health: Study

Probability of developing Lyme disease is genetically influenced, research suggests

Findings support a more cautious approach to early decision-making for brain injury patients receiving life support

Improving the safety of iPS cell-derived pancreatic islets by eliminating unwanted cells

Scientists find sleep may not clear brain toxins

Birth by C-section more than doubles odds of measles vaccine failure, study finds

What makes a memory? It may be related to how hard your brain had to work

Related stories.

Both metabolically healthy and unhealthy forms of obesity found to increase risk of obesity-related cancers

May 13, 2023

Women with obesity do not need to gain weight during pregnancy, new study suggests

Mar 28, 2024

Weight gain in early adult life linked to increased risk of premature death

Oct 16, 2019

Remaining increase in cancer risk after high childhood BMI

May 2, 2022

Study: Obesity alone does not increase risk of death

Jul 12, 2018

Researchers explore impact of inadequate gestational weight gain

Dec 30, 2021

Recommended for you

Study reveals need to review temperature control measures in hospitals to manage Legionella

May 10, 2024

Research team introduces new tool to boost battle against childhood undernutrition

Navy Growler jet noise over Washington state's Whidbey Island could impact 74,000 people's health

May 9, 2024

New cells could be key to treating obesity

What makes a public health campaign successful?

Let us know if there is a problem with our content.

Use this form if you have come across a typo, inaccuracy or would like to send an edit request for the content on this page. For general inquiries, please use our contact form . For general feedback, use the public comments section below (please adhere to guidelines ).

Please select the most appropriate category to facilitate processing of your request

Thank you for taking time to provide your feedback to the editors.

Your feedback is important to us. However, we do not guarantee individual replies due to the high volume of messages.

E-mail the story

Your email address is used only to let the recipient know who sent the email. Neither your address nor the recipient's address will be used for any other purpose. The information you enter will appear in your e-mail message and is not retained by Medical Xpress in any form.

Newsletter sign up

Get weekly and/or daily updates delivered to your inbox. You can unsubscribe at any time and we'll never share your details to third parties.

More information Privacy policy

Donate and enjoy an ad-free experience

We keep our content available to everyone. Consider supporting Science X's mission by getting a premium account.

E-mail newsletter

Thousands Believe Covid Vaccines Harmed Them. Is Anyone Listening?

All vaccines have at least occasional side effects. But people who say they were injured by Covid vaccines believe their cases have been ignored.

Shaun Barcavage, 54, a nurse practitioner in New York City, said that ever since his first Covid shot, standing up has sent his heart racing. Credit... Hannah Yoon for The New York Times

Supported by

• Share full article

By Apoorva Mandavilli

Apoorva Mandavilli spent more than a year talking to dozens of experts in vaccine science, policymakers and people who said they had experienced serious side effects after receiving a Covid-19 vaccine.

• Published May 3, 2024 Updated May 4, 2024

Within minutes of getting the Johnson & Johnson Covid-19 vaccine, Michelle Zimmerman felt pain racing from her left arm up to her ear and down to her fingertips. Within days, she was unbearably sensitive to light and struggled to remember simple facts.

She was 37, with a Ph.D. in neuroscience, and until then could ride her bicycle 20 miles, teach a dance class and give a lecture on artificial intelligence, all in the same day. Now, more than three years later, she lives with her parents. Eventually diagnosed with brain damage, she cannot work, drive or even stand for long periods of time.

“When I let myself think about the devastation of what this has done to my life, and how much I’ve lost, sometimes it feels even too hard to comprehend,” said Dr. Zimmerman, who believes her injury is due to a contaminated vaccine batch .

The Covid vaccines, a triumph of science and public health, are estimated to have prevented millions of hospitalizations and deaths . Yet even the best vaccines produce rare but serious side effects . And the Covid vaccines have been given to more than 270 million people in the United States, in nearly 677 million doses .

Dr. Zimmerman’s account is among the more harrowing, but thousands of Americans believe they suffered serious side effects following Covid vaccination. As of April, just over 13,000 vaccine-injury compensation claims have been filed with the federal government — but to little avail. Only 19 percent have been reviewed. Only 47 of those were deemed eligible for compensation, and only 12 have been paid out, at an average of about $3,600 .

Some scientists fear that patients with real injuries are being denied help and believe that more needs to be done to clarify the possible risks.

“At least long Covid has been somewhat recognized,” said Akiko Iwasaki, an immunologist and vaccine expert at Yale University. But people who say they have post-vaccination injuries are “just completely ignored and dismissed and gaslighted,” she added.

In interviews and email exchanges conducted over several months, federal health officials insisted that serious side effects were extremely rare and that their surveillance efforts were more than sufficient to detect patterns of adverse events.

“Hundreds of millions of people in the United States have safely received Covid vaccines under the most intense safety monitoring in U.S. history,” Jeff Nesbit, a spokesman for the Department of Health and Human Services, said in an emailed statement.

But in a recent interview, Dr. Janet Woodcock, a longtime leader of the Food and Drug Administration, who retired in February, said she believed that some recipients had experienced uncommon but “serious” and “life-changing” reactions beyond those described by federal agencies.

“I feel bad for those people,” said Dr. Woodcock, who became the F.D.A.’s acting commissioner in January 2021 as the vaccines were rolling out. “I believe their suffering should be acknowledged, that they have real problems, and they should be taken seriously.”

“I’m disappointed in myself,” she added. “I did a lot of things I feel very good about, but this is one of the few things I feel I just didn’t bring it home.”

Federal officials and independent scientists face a number of challenges in identifying potential vaccine side effects.

The nation’s fragmented health care system complicates detection of very rare side effects, a process that depends on an analysis of huge amounts of data. That’s a difficult task when a patient may be tested for Covid at Walgreens, get vaccinated at CVS, go to a local clinic for minor ailments and seek care at a hospital for serious conditions. Each place may rely on different health record systems.

There is no central repository of vaccine recipients, nor of medical records, and no easy to way to pool these data. Reports to the largest federal database of so-called adverse events can be made by anyone, about anything. It’s not even clear what officials should be looking for.

“I mean, you’re not going to find ‘brain fog’ in the medical record or claims data, and so then you’re not going to find” a signal that it may be linked to vaccination, Dr. Woodcock said. If such a side effect is not acknowledged by federal officials, “it’s because it doesn’t have a good research definition,” she added. “It isn’t, like, malevolence on their part.”

The government’s understaffed compensation fund has paid so little because it officially recognizes few side effects for Covid vaccines. And vaccine supporters, including federal officials, worry that even a whisper of possible side effects feeds into misinformation spread by a vitriolic anti-vaccine movement.

‘I’m Not Real’

Patients who believe they experienced serious side effects say they have received little support or acknowledgment.

Shaun Barcavage, 54, a nurse practitioner in New York City who has worked on clinical trials for H.I.V. and Covid, said that ever since his first Covid shot, merely standing up sent his heart racing — a symptom suggestive of postural orthostatic tachycardia syndrome , a neurological disorder that some studies have linked to both Covid and, much less often, vaccination .

He also experienced stinging pain in his eyes, mouth and genitals, which has abated, and tinnitus, which has not.

“I can’t get the government to help me,” Mr. Barcavage said of his fruitless pleas to federal agencies and elected representatives. “I am told I’m not real. I’m told I’m rare. I’m told I’m coincidence.”

Renee France, 49, a physical therapist in Seattle, developed Bell’s palsy — a form of facial paralysis, usually temporary — and a dramatic rash that neatly bisected her face. Bell’s palsy is a known side effect of other vaccines, and it has been linked to Covid vaccination in some studies.

But Dr. France said doctors were dismissive of any connection to the Covid vaccines. The rash, a bout of shingles, debilitated her for three weeks, so Dr. France reported it to federal databases twice.

“I thought for sure someone would reach out, but no one ever did,” she said.

Similar sentiments were echoed in interviews, conducted over more than a year, with 30 people who said they had been harmed by Covid shots. They described a variety of symptoms following vaccination, some neurological, some autoimmune, some cardiovascular.

All said they had been turned away by physicians, told their symptoms were psychosomatic, or labeled anti-vaccine by family and friends — despite the fact that they supported vaccines.

Even leading experts in vaccine science have run up against disbelief and ambivalence.

Dr. Gregory Poland, 68, editor in chief of the journal Vaccine, said that a loud whooshing sound in his ears had accompanied every moment since his first shot, but that his entreaties to colleagues at the Centers for Disease Control and Prevention to explore the phenomenon, tinnitus, had led nowhere.

He received polite responses to his many emails, but “I just don’t get any sense of movement,” he said.

“If they have done studies, those studies should be published,” Dr. Poland added. In despair that he might “never hear silence again,” he has sought solace in meditation and his religious faith.

Dr. Buddy Creech, 50, who led several Covid vaccine trials at Vanderbilt University, said his tinnitus and racing heart lasted about a week after each shot. “It’s very similar to what I experienced during acute Covid, back in March of 2020,” Dr. Creech said.

Research may ultimately find that most reported side effects are unrelated to the vaccine, he acknowledged. Many can be caused by Covid itself.

“Regardless, when our patients experience a side effect that may or may not be related to the vaccine, we owe it to them to investigate that as completely as we can,” Dr. Creech said.

Federal health officials say they do not believe that the Covid vaccines caused the illnesses described by patients like Mr. Barcavage, Dr. Zimmerman and Dr. France. The vaccines may cause transient reactions, such as swelling, fatigue and fever, according to the C.D.C., but the agency has documented only four serious but rare side effects .

Two are associated with the Johnson & Johnson vaccine, which is no longer available in the United States: Guillain-Barré syndrome , a known side effect of other vaccines , including the flu shot; and a blood-clotting disorder.

The C.D.C. also links mRNA vaccines made by Pfizer-BioNTech and Moderna to heart inflammation, or myocarditis, especially in boys and young men. And the agency warns of anaphylaxis, or severe allergic reaction, which can occur after any vaccination.

Listening for Signals

Agency scientists are monitoring large databases containing medical information on millions of Americans for patterns that might suggest a hitherto unknown side effect of vaccination, said Dr. Demetre Daskalakis, director of the C.D.C.’s National Center for Immunization and Respiratory Diseases.

“We toe the line by reporting the signals that we think are real signals and reporting them as soon as we identify them as signals,” he said. The agency’s systems for monitoring vaccine safety are “pretty close” to ideal, he said.

Those national surveillance efforts include the Vaccine Adverse Event Reporting System (VAERS). It is the largest database, but also the least reliable: Reports of side effects can be submitted by anyone and are not vetted, so they may be subject to bias or manipulation.

The system contains roughly one million reports regarding Covid vaccination, the vast majority for mild events, according to the C.D.C.

Federal researchers also comb through databases that combine electronic health records and insurance claims on tens of millions of Americans. The scientists monitor the data for 23 conditions that may occur following Covid vaccination. Officials remain alert to others that may pop up, Dr. Daskalakis said.

But there are gaps, some experts noted. The Covid shots administered at mass vaccination sites were not recorded in insurance claims databases, for example, and medical records in the United States are not centralized.

“It’s harder to see signals when you have so many people, and things are happening in different parts of the country, and they’re not all collected in the same system,” said Rebecca Chandler, a vaccine safety expert at the Coalition for Epidemic Preparedness Innovations.

An expert panel convened by the National Academies concluded in April that for the vast majority of side effects, there was not enough data to accept or reject a link.

Asked at a recent congressional hearing whether the nation’s vaccine-safety surveillance was sufficient, Dr. Peter Marks, director of the F.D.A.’s Center for Biologics Evaluation and Research, said, “I do believe we could do better.”

In some countries with centralized health care systems, officials have actively sought out reports of serious side effects of Covid vaccines and reached conclusions that U.S. health authorities have not.

In Hong Kong, the government analyzed centralized medical records of patients after vaccination and paid people to come forward with problems. The strategy identified “a lot of mild cases that other countries would not otherwise pick up,” said Ian Wong, a researcher at the University of Hong Kong who led the nation’s vaccine safety efforts.

That included the finding that in rare instances — about seven per million doses — the Pfizer-BioNTech vaccine triggered a bout of shingles serious enough to require hospitalization.

The European Medicines Agency has linked the Pfizer and Moderna vaccines to facial paralysis, tingling sensations and numbness. The E.M.A. also counts tinnitus as a side effect of the Johnson & Johnson vaccine, although the American health agencies do not. There are more than 17,000 reports of tinnitus following Covid vaccination in VAERS.

Are the two linked? It’s not clear. As many as one in four adults has some form of tinnitus. Stress, anxiety, grief and aging can lead to the condition, as can infections like Covid itself and the flu.

There is no test or scan for tinnitus, and scientists cannot easily study it because the inner ear is tiny, delicate and encased in bone, said Dr. Konstantina Stankovic, an otolaryngologist at Stanford University.

Still, an analysis of health records from nearly 2.6 million people in the United States found that about 0.04 percent , or about 1,000, were diagnosed with tinnitus within three weeks of their first mRNA shot. In March, researchers in Australia published a study linking tinnitus and vertigo to the vaccines .

The F.D.A. is monitoring reports of tinnitus, but “at this time, the available evidence does not suggest a causal association with the Covid-19 vaccines,” the agency said in a statement.

Despite surveillance efforts, U.S. officials were not the first to identify a significant Covid vaccine side effect: myocarditis in young people receiving mRNA vaccines. It was Israeli authorities who first raised the alarm in April 2021. Officials in the United States said at the time that they had not seen a link.

On May 22, 2021, news broke that the C.D.C. was investigating a “relatively few” cases of myocarditis. By June 23, the number of myocarditis reports in VAERS had risen to more than 1,200 — a hint that it is important to tell doctors and patients what to look for.

Later analyses showed that the risk for myocarditis and pericarditis, a related condition, is highest after a second dose of an mRNA Covid vaccine in adolescent males aged 12 to 17 years.

In many people, vaccine-related myocarditis is transient. But some patients continue to experience pain, breathlessness and depression, and some show persistent changes on heart scans . The C.D.C. has said there were no confirmed deaths related to myocarditis, but in fact there have been several accounts of deaths reported post-vaccination .

Pervasive Misinformation

The rise of the anti-vaccine movement has made it difficult for scientists, in and out of government, to candidly address potential side effects, some experts said. Much of the narrative on the purported dangers of Covid vaccines is patently false, or at least exaggerated, cooked up by savvy anti-vaccine campaigns.

Questions about Covid vaccine safety are core to Robert F. Kennedy Jr.’s presidential campaign. Citing debunked theories about altered DNA, Florida’s surgeon general has called for a halt to Covid vaccination in the state.

“The sheer nature of misinformation, the scale of misinformation, is staggering, and anything will be twisted to make it seem like it’s not just a devastating side effect but proof of a massive cover-up,” said Dr. Joshua Sharfstein, a vice dean at Johns Hopkins University.

Among the hundreds of millions of Americans who were immunized for Covid, some number would have had heart attacks or strokes anyway. Some women would have miscarried. How to distinguish those caused by the vaccine from those that are coincidences? The only way to resolve the question is intense research .

But the National Institutes of Health is conducting virtually no studies on Covid vaccine safety, several experts noted. William Murphy, a cancer researcher who worked at the N.I.H. for 12 years, has been prodding federal health officials to initiate these studies since 2021.

The officials each responded with “that very tired mantra: ‘But the virus is worse,’” Dr. Murphy recalled. “Yes, the virus is worse, but that doesn’t obviate doing research to make sure that there may be other options.”

A deeper understanding of possible side effects, and who is at risk for them, could have implications for the design of future vaccines, or may indicate that for some young and healthy people, the benefit of Covid shots may no longer outweigh the risks — as some European countries have determined.

Thorough research might also speed assistance to thousands of Americans who say they were injured.

The federal government has long run the National Vaccine Injury Compensation Program , designed to compensate people who suffer injuries after vaccination. Established more than three decades ago, the program sets no limit on the amounts awarded to people found to have been harmed.

But Covid vaccines are not covered by that fund because Congress has not made them subject to the excise tax that pays for it. Some lawmakers have introduced bills to make the change.

Instead, claims regarding Covid vaccines go to the Countermeasures Injury Compensation Program . Intended for public health emergencies, this program has narrow criteria to pay out and sets a limit of $50,000, with stringent standards of proof.

It requires applicants to prove within a year of the injury that it was “the direct result” of getting the Covid vaccine, based on “compelling, reliable, valid, medical, and scientific evidence.”

The program had only four staff members at the beginning of the pandemic, and now has 35 people evaluating claims. Still, it has reviewed only a fraction of the 13,000 claims filed, and has paid out only a dozen.

Dr. Ilka Warshawsky, a 58-year-old pathologist, said she lost all hearing in her right ear after a Covid booster shot. But hearing loss is not a recognized side effect of Covid vaccination.

The compensation program for Covid vaccines sets a high bar for proof, she said, yet offers little information on how to meet it: “These adverse events can be debilitating and life-altering, and so it’s very upsetting that they’re not acknowledged or addressed.”

Dr. Zimmerman, the neuroscientist, submitted her application in October 2021 and provided dozens of supporting medical documents. She received a claim number only in January 2023.

In adjudicating her claim for workers’ compensation, Washington State officials accepted that Covid vaccination caused her injury, but she has yet to get a decision from the federal program.

One of her therapists recently told her she might never be able to live independently again.

“That felt like a devastating blow,” Dr. Zimmerman said. “But I’m trying not to lose hope there will someday be a treatment and a way to cover it.”

Apoorva Mandavilli is a reporter focused on science and global health. She was a part of the team that won the 2021 Pulitzer Prize for Public Service for coverage of the pandemic. More about Apoorva Mandavilli

Advertisement