During the COVID-19 Pandemic, researchers, analysts, policy-makers, and international organisations alike for the first time in history started using multidimensional indices of disadvantage, poverty, and vulnerability (Disadvantage indices) to inform equitable health policies, plans, and interventions around the world. In the US, in an unprecedented way, the majority of states added disadvantage indices to prioritize not only across different populations, but also within them, specifically to address the disparate impact Covid-19 had on communities of color. Disadvantage indices typically integrate relevant variables from census data, relating to, for example, educational attainment, income, or housing situation, to characterize the relative levels of advantage and disadvantage of people living in particular geographic areas. Because one of the consequences of structural racism is that it curtails economic opportunity, in countries such as the US, more disadvantaged communities also comprise larger shares of people of color. Depending on available data, geographic areas can be as small as the household level, or more commonly, neighborhoods of around 1,000 people or higher level administrative units. Indices function by scoring each area on each of the variables that constitute an index, and generating an overall score, that can be used to rank areas by disadvantage, either with the national level, or at the subnational level.
This Symposium brings together theorists, empirical researchers, and practitioners at the forefront of exploring the justification, impact, strengths and weaknesses of disadvantage indices in promoting health equity, social and racial justice.
During the 2010’s, the CRISPR-Cas9 technique – with its promise as a new, more efficient, more accurate and feasible form of gene editing – has reignited a popular awareness of genetic science to a degree not seen since the advent of the Human Genome Project of the 1990s. It is now one decade since the 2012 paper that Doudna and Charpentier co-authored and there have been a number of promising developments of the CRISPR tools in research (e.g. research on heritable disease (DMD) and infectious disease (HIV); corrections of genetic bases to some heart defects; to beta thalassaemia). Throughout this time, there have also been developments that have caused concern (e.g. the 2015 embryo gene-editing experiments) and outrage, particularly with the infamous 2018 announcement of the first gene-edited babies (where the changes could be inherited, arguably leading to unprecedented – and premature – interference into the human genome). Concerns have been raised about risk and safety, impact on future generations, unnatural animal-human chimeras, problematic non-medical uses, potential impacts on women and persons with disabilities, and wider impacts on broader society in the form of increasing inequalities (gender, racial, ability) and other concerns of social justice, patenting and ownership issues, and concerns over eugenics. In response, a number of statements (Lanphier et al 2015; Chan et al 2015; Andorno et al 2020), Reports (Nuffield 2016, 2018; NASEM 2017; National Academies/Royal Society 2020), International Summits (2015, 2018, 2021), and a voluminous academic literature have emerged.
Throughout such statements, reports, summits and in the literature, there have been numerous, urgent calls for public engagement and the desire for various degrees of social consensus before the technology either proceeds at all, or before it continues to proceed in various directions (Baltimore et al. 2015). Such calls range from improving science communication (top down) to more deliberative forms of public empowerment (Baylis 2019). Such calls for public dialogue are not unprecedented and have been used in the wider genetics context for some years (Feeney et al 2018). The justifications range from the epistemic (wider inputs of reflection, perspectives, value systems can improve policy guidance in such controversial areas) to normative (everyone who may be affected by a technology should have a say – or at least be consulted – in how it is developed and used) to merely strategic or instrumental (to engage with people to foster acceptance).
The calls for public engagement, some degree of social consensus or that all relevant perspectives and groups are genuinely (not just instrumentally) consulted sounds reasonable and warranted. However, what does it entail specifically? Who should it involve? Does it work? Has it been effective to date? These questions will be critically examined by four papers from diverse perspectives – both in terms of the value of public participation in the context of genome editing and also in terms of normative evaluations of the technology itself. Oliver Feeney explores how public engagement on heritable genome editing will need to attempt forms of genuine participatory-deliberative engagement in order for it to counter the levels of distrust and polarisation in contemporary society. However, Robert Ranisch sees repeated calls for public participation and social consensus to be largely empty gestures, with little influence on the policy and an instrumental interest in creating public trust in biotechnology. Gardar Árnason explores two particular cases of genome editing – organoids and xenotransplantation – in terms of involving relevant stakeholders in policy decisions about the governance of genome editing research. Finally, Gabriele Werner-Felmayer explores the persistence of important misconceptions and how they affect the human genome editing debate – particularly raising the question as to the degree that the public is aware of the risks and experimental nature of a new technology in heritable genomic modification.
Such diversity of viewpoints, expressed in an atmosphere of respect and reciprocity, will not only encourage constructive debate and the potential for progress, but will guarantee an exciting and lively panel session.
The current pandemic is not only an epidemiological crisis, but also a crisis of the social. Whether it is the distribution of vaccines, representation in vaccine trial cohorts, the implications of vaccination certificates, or access to schooling in the context of public health measures - commentators highlight significant inequalities and injustices in access to participation. Some of these issues in result in groups and individuals having different levels of visibility in data that are the basis for decisions and allocations. Other imbalances are well captured in data and evidence bases, but inconsistently taking up in action and decision-making.
Of central importance in this context is the concept of data justice. It refers to justice around the use of data and could be viewed as the first virtue of social institutions in a datafied and data-driven society. At the same time, however, there is not only the urgent question of what data justice means and what it takes to promote it, but also how to deal with observed or experienced forms of injustice, marginalization and invisibility. The quest for data justice is particularly relevant in view of the observation that a significant range of injustices, whether captured by or invisible in existing evidence bases, pertain to groups that are already marginalized and become further excluded through the way data are generated, shared and used. In the current pandemic and beyond, this includes but is not limited to groups such as migrants or children whose legal recognition differs across jurisdictions. There is a need for strategies and mechanisms to make marginalized groups and individuals visible in order to bring them within the scope of concrete pursuits of data justice. Data justice might have to be complemented by data solidarity as the commitment to engage in practices that remedy data-facilitated experiences of injustice.
The aim of this panel, which is chaired together by Barbara Prainsack (University Vienna) and Matthias Braun (FAU Erlangen-Nürnberg), is to examine the relationship between data justice and data solidarity from different perspectives, to ask how both can be promoted in practice, and how the focus can be widened or shifted to include groups who currently remain neglected. To this end, the panel brings together experts from ethics, social sciences, and science and technology studies. The panel will focus on two issues. First, it will jointly explore and debate the contextual contours of data justice: what this concept entails, how it is to be made precise, and how it can be delineated from other concepts. Second, the panel will base this discussion on a dedicated consideration of concrete examples and experiences that have been shaped by different forms of data injustices.
Jantina de Vries (University of Cape Town) will explore the notion of data colonialism and its application to settings where data are purported to be ‘just there’ and ready to be taken. She will endeavor to criticize these presuppositions and outline concrete attempts in research and regulation to the resist the dynamics of data colonialism.
Patrik Hummel (TU Eindhoven) argues that conceptual clarifications on the content of data justice, while important in themselves, are insufficient for actually promoting and achieving data justice in practice. For the latter, moments of solidarity are indispensable to guide decision-making by identification, empathy, and respect with the perspectives of those who are currently the subject of data injustices.
Tahu Kukutai (University of Waikato) focuses on the research and activism of Māori data sovereignty in Aotearoa New Zealand. She conceptualizes Indigenous data sovereignty (IDSov) in general and Māori data sovereignty in particular as a movement seeking to empower Indigenous peoples with control over their data, and to proceed towards decolonial forms of data justice.
Stephanie Russo Carroll (University of Arizona) starts with an analysis of the FAIR principles and demonstrate how they ignore relationships, power differentials and the historical conditions associated with the collection of data that impact ethical and socially responsible data use. She demonstrates how a lack of control over the potential uses of data and knowledge creates concerns for Indigenous Peoples when considering open science protocols.
Tamar Sharon (Radboud Universiteit Nijmegen) argues against the background of diverse experiences of marginalization and invisibility that bioethics needs to expand its purview to account for the datafied and societal nature of harms associated with the increasing data-intensity of health and medicine. She makes a plea for a greater alignment of bioethics with data justice, and offers concrete ideas for achieving this.
In this panel, the Healthy Families Initiative of the O'Neill Institute for Law and National and Global Health of Georgetown University analyze how the inaction of the Ministry of Health to regulate equitable access to ICUs in Colombia has generated ambiguous recommendations, fragmentation of interpretations and the existence of protocols that generate discrimination and territorial disparities. One year and a half after the beginning of the pandemic, Colombia does not have a mandatory, uniform protocol with criteria consistent with human rights to prioritize and allocate scarce life support resources, such as beds in ICUs and oxygen, nor was there a transparent and participatory process to define the rationing criteria in the context of the pandemic. The recommendations issued by the Ministry of Health in April 2020 allow the application of criteria that may amount to discrimination and do not include when or how ethical triage exercises should be activated. Thus, there is no clear obligation to exhaust all possibilities of patient referral to other places with availability before activating ethical triage. Additionally, this lack of clarity has allowed that some of the protocols in different cities – for example Medellín and Bucaramanga, contain criteria that directly or indirectly create a more adverse scenario for groups specially protected by non-discrimination provisions at the national and international lever, specifically people with disabilities, older persons and/or those who suffer from pre-existing health conditions.
A wave of revolutionary assisted reproductive technologies (ARTs) that were once confined to the realm of science fiction are now being made possible as a result of cutting-edge innovations in science. Some of these technologies, such as in-vitro derived gametes (IVGs) and ectogestation (i.e. gestation outside the human body) have yet to be used in humans. However, other technologies such as mitochondrial replacement techniques and genetically edited embryos have been used in humans, albeit in an extremely limited capacity. A pressing area of debate among bioethicists is how (if at all) we should regulate the innovation and clinical use of these emerging ARTs, both at the national and international level?
This symposium aims to discuss the ethical and legal challenges of regulating innovative ARTs, with a particular focus on four distinct but related technologies. The first technology is ectogestation (also known as 'ectogenesis'), which refers to pregnancy and gestation outside the human body. In the near term, following success with animal models, this technology is aimed at providing life support for prematurely born babies. In the long term, ectogestation could allow the physical labor of fully gestating a child to be assisted by an apparatus. The second technology is IVGs. By reprogramming cells, scientists have shown that it is possible to cultivate gametes in-vitro in animal models, with considerable progress having also been made towards the creation of human gametes. IVGs could potentially allow people who cannot naturally generate functional gametes to instead create them in-vitro. The third technology is mitochondrial replacement techniques (aka 'three-person IVF'), which aim to avoid or reduce the likelihood of the maternal transmission of serious mitochondrial diseases. The two leading techniques construct an egg (using maternal spindle transfer) or embryo (using pronuclear transfer) that carries the intending parent's nuclear DNA and the mitochondria with healthy mitochondrial DNA from a donor. The first human conceived via a mitochondrial replacement technique (i.e. maternal spindle transfer) was born in 2016. The fourth technology is the genetic editing of embryos or gametes via CRISPR genome editing. This technology works by editing (e.g. modifying/removing/replacing) genes in the nuclear DNA of an embryo or gametes. For example, this technique could be used to edit out a harmful genetic mutation from the nuclear DNA of an embryo in order to ensure the resulting offspring is healthy. To date, this technology has only been used once on human embryos for the purposes of procreation and in 2018 this resulted in two offspring in China.
These remarkable technologies hold the promise of transforming reproductive biomedicine; however, significant questions have been raised about how society should regulate their use.
To begin, there is an overarching question of whether attempts should be made to regulate these technologies internationally via consensus agreements and declarations. For instance, is it the place of international bodies, such as the World Health Organization (WHO) or the International Society for Stem Cell Research (ISSCR) (among others), to provide regulatory guidance and recommendations? In contrast, should governance instead take place solely at the national level? Alternatively, is a combination of national and international governance needed? For instance, one topic that our symposium aims to discuss is whether regulations should be relaxed on the 14-day rule for human embryo research, as this might encourage further innovative progress to be made with ARTs, such as IVGs, ectogestation, mitochondrial replacement techniques and gene editing. As it happens, the ISSCR has recently recommended relaxing the 14-day rule time limit on embryo research. While some have welcomed this change to international guidance, others have opposed it by arguing that it amounts to meddling in the affairs of individual nations. There is also ongoing debate as to whether the international governance of innovative ARTs can be adequately effective at discouraging 'rogue' scientists from using these technologies pre-maturely in an attempt to secure a 'world first'. This symposium aims to discuss important questions and debates like these about the structures of governance needed for innovative ARTs.
The symposium will also aim to address a range of more specific ethical and regulatory questions that apply to each of the ARTs outlined above. First, if children are brought into existence via any of these technologies, what ethical and legal protections should be implemented so that these offspring have access to information about their mode of conception (and anyone involved in it)? Similarly, how should privacy concerns be weighed against safety concerns? For instance, families using these technologies may wish to have privacy from regulators and clinicians after creating offspring; however, it may be necessary to monitor and follow-up offspring to ensure their safety and the safety of future generations that may be created the same way. Important ethical questions also exist about how and why (if at all) editing of the germline should be treated or viewed differently to editing of the mitochondrial germline genome. Does it matter how many or what types of genes are edited in either germline genome? This symposium also aims to consider how innovative ARTs could challenge or reinforce normative views on biological relatedness. Some may wish to use innovative ARTs, like IVGs, CRISPR and MRTs, to ensure they have a biological tie to their offspring; however, others may wish to use ectogestation and IVGs to sever their offspring's biological tie with themselves or others. What are the ethical and regulatory implications of innovative ARTs that can disrupt the way we have come to think about relatedness? Finally, our symposium aims to discuss important questions about the moral and legal statuses of the entities that innovative ARTs create. For example, how should IVGs or ectogestating fetuses be treated under the law?
Symposium Format
This symposium brings together a panel of leading experts to discuss the ethical and regulatory implications of the innovative ARTs outlined above. The event is structured as follows:
Part 1: Four 15 minute presentations from panellists (60 minutes - including a brief introduction by the Chair as part of the first presentation)
Part 2: Chair moderated discussion between audience and panel (30 minutes)
Human challenge trials, in which researchers deliberately expose participants to pathogens, have a long, complicated history that includes both ground-breaking scientific advances and egregiously unethical treatment of participants. They are now a standard step in the testing of new vaccines for malaria and are used for pathogens ranging from influenza to schistosomiasis. During the COVID-19 pandemic, there was vigorous debate over the ethics of employing human challenge trials on the novel coronavirus, and a World Health Organization (WHO) expert working group did not endorse or condemn these studies, but provided key criteria to support their ethical conduct.
In February 2021, the United Kingdom became the first and only country to date to approve and conduct two COVID-19 human challenge studies. One of these studies involved volunteers who had not been exposed to COVID-19, and the other enrolled people previously infected with COVID-19. Both studies were designed to characterize the dose of the virus needed to reliably infect participants but not make them too sick. In addition to developing basic insights about diseases processes and human immunity (e.g., identifying correlates of protection), these studies would create models that could be used to test treatments and vaccines. To support this effort, the Health Research Authority in the UK established a special research ethics committee to consider applications for ethics review of COVID-19 human challenge studies in the UK. This committee used the WHO ethical criteria to ensure their processes addressed the appropriate ethical issues, but also went beyond these criteria in their discussions.
Meanwhile, some ethicists remained critical of these trials, questioning both their value and the risk involved, particularly given the lack of a “rescue therapy” for volunteers who became sick. Challenge trials were initially proposed primarily to expedite vaccine development, but as some vaccines completed testing more rapidly than anticipated and were authorized for emergency use, the potential use cases for the U.K.’s challenge model shifted to others that may have been considered less compelling (e.g., developing insights about transmission of SARS-CoV-2 or prioritizing antiviral treatments).
Finally, the COVID-19 pandemic is, among many other things, a call to action to prepare for future pandemics and other infectious diseases threats. Challenge studies can play important roles in combatting infectious diseases, but it is not clear whether they have been used optimally, given the controversy over their use and the disagreements that persist amongst both ethicists and scientists. The final presenter will discuss what role challenge studies should play in future epidemics, factoring in ethical and scientific considerations.
This panel brings together members of the special committee that reviewed these trials and members of the WHO working group who drew up the guidance, along with ethicists who remain critical of the conduct of these controversial studies. The goal of the panel is to determine what lessons can be learned from this experience to inform the ethical use of human challenge studies in future pandemics and common infectious diseases alike.
Drawing on prior experience with the outbreak of the Severe Acute Respiratory Syndrome (SARS) almost two decades ago, social distancing measures (including drastic shelter-in-place orders in some cities) were quickly introduced across China in the early phase of the COVID-19 outbreak. Other East Asian societies followed suit, but unlike during the SARS outbreak, many public health measures for surveillance of at-risk individuals and infection control are now enhanced by ‘Smart City’ and other digital technologies. Digital tools, including chatbots endowed with artificial intelligence (AI), have been deployed to shift part of healthcare provision away from hospitals and to support self-management of chronic disease in the community. With the closure of schools and adults working from home, digital technologies have sustained many aspects of professional and social life at a pace and scale not considered to be practicable before the outbreak. Unlike East Asian societies, continental Europe and India were not seriously impacted by SARS. Without the benefit of prior experience and with their health systems already burdened by a number of systemic and social challenges, some European Union countries and India have had less policy measures and infection control tools at its disposal in dealing with the current pandemic, at least in the short term.
With the COVID-19 outbreak, digital tools like contact tracing applications have been quickly deployed for the purpose of infection control. At the epicentre of the outbreak, a subsidiary of China’s biggest insurer, Ping An Insurance, announced that its AI screening system for the disease has been in operation since 18 February 2020. Within less than a month, this system reportedly completed over 580,000 screenings in 47,000 households within 17 communities in Wuhan, and successfully identified more than 1,600 individuals suspected to have contracted COVID-19. In essence, the insurer’s screening system operated 3,000 AI chatbots working concurrently, with the capacity of screening a total of 1.5 million audio calls per day. Digital contact tracing tools were then applied to track residents suspected to be symptomatic and individuals who might have been infected by them. In India, the Aarogya Setu app was developed and uses a smart phone’s Bluetooth and location data to inform users if they have been in close proximity to a person with COVID-19 by scanning through a database of known cases of infection. The Indian government has made it mandatory for its employees, as well as those in the private sector, to download the app. In Hong Kong and Singapore, Bluetooth-based contact tracing technology that was developed and applied does not have any geolocation technology like GPS, and does not connect to the Internet. Unlike the technology applied in China and India, the digital tools in Hong Kong and Singapore do not capture geolocation data and the proximity-data cannot be extracted remotely. Contact tracing applications in China and India generally collect more data (including geolocation data) than those in Hong Kong and Singapore. Perhaps a crucial insight that may be derived from this comparative analysis is that the existence of a clear governance mechanism (which we use broadly to include a regulatory regime) does in fact better ensure that certain values (in this case, privacy, harm minimisation, autonomy and stewardship) are observed in practice, whether mediated by digital technology or not. Additionally, such a mechanism supports collaboration. For instance, a global regulatory forum has helped to promote the development of regulatory norms on the use of privacy in digital contact tracing apps. Within the European Union, the European Data Protection Board (EDPB) emphasized that data protection is indispensable to build trust, create conditions for social acceptability, and ensure the effectiveness of digital proximity tracking apps. Where European Union member states and institutions are concerned, the EDPB indicates that the general principles of effectiveness, necessity and proportionality must guide any measure that involve processing of personal data to combat COVID-19. These principles have also contributed to normative developments in Asia.
Our proposed symposium is aimed at comparatively analysing how the COVID-19 pandemic has mainstreamed digital technologies in public health surveillance in continental Europe, India, China (mainland and Hong Kong), and Singapore. Digital tools that are used to monitor health conditions were previously only applied in limited and controlled settings, like health-related research. With the intensive use of digital technologies and resulting data amassed during the pandemic, these technologies will have a fundamental role in shaping the post-pandemic public health and healthcare landscapes, as well as other aspects of social life, in some already increasingly digitalized societies. By “digitalized” and “digitalization”, we refer to the added value of applying digital technologies (such as data analytics, AI and robotics) to interventions directed at meeting healthcare, public health and, even more broadly, social goals. With rapid digitalization, the centre-staging of challenges with (public) health systems and data integration, data governance (including concerns about privacy and cybersecurity), and raising data literacy across all levels of society may well be one of the lasting legacies of this pandemic. It could also aggravate the digital divide among countries, and is thereby also a significant concern in global health ethics.
More specifically, the main objectives of the proposed symposium are as follows:
(1) Assess, comparatively, the extent of digitalization of public health surveillance and monitoring of COVID-19 in India, China (mainland and Hong Kong), and Singapore. We will focus on public health policies, law and regulations on contact tracing and digital tracking of patients’ health status and services received in these jurisdictions and will analyse them comparatively with those of the European Union (EU);
(2) Identify key ethical and legal concerns, and mechanisms (or the lack thereof) to address these concerns;
(3) Consider practical means of addressing these ethical and legal concerns through constructive dialogue and engagement; and
(4) Present two case scenarios to discuss the ethical and legal implications of digitalization of public health, with a focus on alleviating global health inequities.
As the world population is aging and becoming frail, there is an increased demand on healthcare globally. Geriatric patients that are frail older individuals (often with dementia) require enormous amounts of resources both in terms of workforce and funding. Also, many western countries, such as Belgium, the Netherland and Canada are legalizing euthanasia not only for suffering patients, but also for patient deemed to have lost their dignity. Dementia and old age are being often presented as reasons to lose dignity, and require euthanasia.
However, the invocations of dignity in bioethical debates are controversial, even though the value of dignity is set to be the foundation of the Universal Declaration of Human Rights. Many believe that dignity is essentially a useless concept, devoid of meaning or a fundamentally flawed concept (Singer 2000, Macklin 2004, Cochrane 2010). Because of the various interpretations, dignity has been used in so many opposing senses that the concept could be too slippery to help tackle difficult problems in bioethics (Kuhse 2000). It is used to justify the legalization of euthanasia for suffering patients, but it is also mentioned as a reason to care for a patient and avoid euthanasia for the most vulnerable of them (Pageau 2020). Others have accused dignity of a rhetorical gesture used in the absence of good argument to stall biomedical progress (Pinker 2008). Moreover, some suspect that dignity is redundant, a term that simply restates other ethical principles such as respect for autonomy (Macklin 2014).
Despite the philosophical controversy, the concept of dignity is pervasive in biomedical practice and it is unlikely that we will no longer need it. Mostly because the patient experience of dignity is a growing area of research in healthcare fields like palliative care (Barclay 2018; Chochinov 2012; Pageau 2020). Dignity is also a relevant concept in the day-to-day experience of the elderly (Nordenfelt 2003, 2004; Franklin et al. 2006; Ternestedt 2009). We still have much to learn from the concrete patient experiences, how is dignity conferred on elderly people when they are treated as having equal status, and what factors contribute to the denial of dignity of the sick and frail (Barclay 2016). Healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for the elderly. There are profound ethical challenges in the daily care of persons with impaired autonomy (Rejno et al. 2019). The ethic of care, as defended by Tronto (2009), asks for more empathy. Caring is central for most geriatricians as frail vulnerable patients need more care than cures, dementia and other illnesses of old age being incurable. Hence, vulnerability has to be met with compassion and empathy or with “love” (Fiasse 2015).
The proposed panel session aims to explore the topic of the dignity of the elderly and try to determine what aspects of dignity apply to the elderly, how dignity relates to caring for fragility and what are the implications for geriatric care. In doing so, we aim to connect the philosophical discussion of dignity with the existing qualitative research on day-to-day experience of patients and healthcare professionals in elderly care.
Due to demographic change and technological innovations, the care of people with de-mentia is undergoing a fundamental transformation. New tracking, sensor and assistance technologies make it possible to monitor and support the behavior of people with demen-tia. These socio-technical systems integrate artificial intelligence, semantics and human interpretations. The increasing use of such technical assistance systems is intended to help overcome the growing challenges in the care of people with dementia. The goals are manifold and include: to enable independent living, to detect problems early for safety issues, to relieve caregiver burden, or to increase the quality and cost-effectiveness of care. At the same time, new challenges arise from the use of such modern technologies. Technologies that increase the independence of people with dementia could deeply in-terfere with their privacy. Systems that focus only on physical safety of people with de-mentia could limit their independence and self-determination. The goal of increasing the sense of security for family and professional caregivers could be pursued at the expense of the autonomy of those affected. These conflicts reflect not least the progressive moral pluralization of modern societies. Thus, not only do value conflicts arise within usage, but moral preferences regarding functionality also vary from user to user. Additionally, when addressing people with dementia, these challenges are even aggravated, as PWD are seen as customers who increasingly lose the ability to participate in design and imple-mentation processes because of the course of their illness. All these pose major chal-lenges, especially for the developers of technical assistive systems, who are often experts from non-medical areas such as informatics, engineering and industry design. Hence, technology assistive care forliving with dementia will require from an ethical point of view various avenues to bring medical ethics, participatory approaches, value-oriented tech-nology design together.
To address these avenues, potentials as well as ethical challenges, our international and interdisciplinary panel sets out to ask what matters ethically in technology-assisted care. Hence, we want to discuss the following issues from different angeles in bioethics:
- What are the chances and challenges of Participatory Design Processes with People with Dementia?
- How to deal in technological design procedures, striving for standards and mass production, with value pluralism and the aim of individualization?
- How can assisted technology promote self-determination and empowerment and not result in another form of external control?
- How should privacy considered as an ethical key term in the context of digitaliza-tion and technological monitoring ? How can privacy be understood in the context of living with dementia?
- How is can empirical research on value and preferences contribute to understand and solve ethical challenges in this field? How can we practical deal with value pluralism?
All in all, this panel will first provide an overview of existing challenges and opportunities in technology-assisted dementia care. Current approaches will be reflected and problem-atized for the specific case of dementia care. It becomes apparent that established con-cepts of conventional care reach their limits here. By combining technology assessment and empirically informed ethics, the panel ultimately contributes to the study of sociologi-cal acceptance and moral evaluation of technical assistance systems in dementia care and identifies possible directions for future research.
Healthcare in many countries includes commercial enterprises. In such settings, clinicians and private health organisations need to ensure that their businesses are successful, profitable and sustainable. Concerns exist about the effects of commercial influences on the costs of health services, the variability in the services offered, and the ways in which they are marketed and delivered. In this Symposium, we will use the exemplar of assisted reproductive technology (ART) in Australia, to explore the ethical, social, epistemic, and regulatory issues raised by the commercialisation of healthcare.
Welcome Message - Dr. Conradin Cramer; Cantonal Councilor City of Basel
Prof. Alena Buyx, Professor of Ethics in Medicine and Health Technologies and Director of the Institute of History and Ethics in Medicine at Technical University Munich, Germany
Prof. Angus Dawson, Professor of Bioethics and Director of Sydney Health Ethics, University of Sydney, Australia
Prof. Samia Hurst, Director, Institute for Ethics, History, Humanities and the Department of Health and Community Medicine, University of Geneva, Switzerland
Prof. Florencia Luna, Program of Bioethics at FLACSO (Latin American University of Social Sciences). Argentina
Prof. Jerome Singh, Prof. Jerome Singh, Director: Scientific Advisory Group on Emergencies (SAGE), Academy of Science of South Africa, South Africa.
It is difficult to overstate how much the COVID-19 pandemic has impacted our lives and world. By the end of July 2021, there had been nearly 200 million reported cases of COVID-19 and 4.16 million deaths from the disease worldwide. The global economy has been battered and bruised. Our ways of life have changed dramatically, adapting to the limits and losses of a world trapped in a pandemic. For nearly two years, despair has not only become common, but it seems like the rational conclusion to our situation.
Our greatest hope for ending the pandemic is vaccination. Amazingly, the world is now deploying 19 different COVID-19 vaccines: some are fully approved; others are authorized for emergency use; and all of them seem to be safe and effective, albeit by varying standards and not always with transparency. Research and development continue: nearly 100 candidate COVID-19 vaccines are being investigated in clinical trials. Since vaccine rollouts began last year, nearly 4 billion doses have been administered and nearly 1.1 billion people have been fully vaccinated against COVID-19.
Pandemics have occurred before, of course. But never have science and technology been so poised for such a rapid vaccine-based response to a novel virus. Despite many victories in our battle against COVID-19, there have been and will continue to be multiple failures. The failures occur in different domains: research and development, leadership and governance, education and communication, coordination and cooperation. In each domain, the moral missteps have involved failures to fulfill responsibilities or failures to seek or achieve solidarity. One type of failure we must avoid is the failure to learn. COVID-19 can teach us vital lessons about responsibility and solidarity during a pandemic. The goal of this panel is to identify and articulate some of those lessons so that we are better prepared for the future. In particular, we need to identify and address the ethical issues surrounding pandemic vaccines. It is imperative that we learn these lessons because pandemics will surely reemerge.
Our panel includes five speakers from the United States, Romania (Central and Eastern Europe), and Ghana (West Africa). Each panelist will deliver a 15-minute presentation on a different ethical issue related to COVID-19 vaccines, and identify significant lessons for the future of pandemic vaccines. Following the presentations, there will be a 15-minute Q&A session with the audience.
The first panelist will argue that it was a mistake for vaccine allocation frameworks to prioritize likely victims of COVID-19. Instead, we ought to have prioritized likely vectors. By prioritizing likely vectors for vaccination, we would have better contained the spread and limited the development of more transmissible and virulent variants. Thus, COVID-19 vaccine prioritization selected and pursued the wrong goal.
The second panelist will argue that bioethicists were wrong to employ a principles-first approach to designing vaccine allocation schemes. The principles-first approach neglects reality or makes it an afterthought. Not only does this diminish the value of the allocation scheme, but it also undermines the implementation of vaccination programs. He will argue that in order to improve moral deliberations about vaccine allocation in future pandemics, we need to develop a reality-first approach, one that gives due consideration to implementation-related matters of fact.
The third panelist will discuss two important ways COVID-19 has affected children in Ghana, a country that has so far fully vaccinated just over 1% of its population. He will describe the risks to which Ghanaian children are exposed by delaying vaccine trials with young participants. He will also explain how COVID-19’s disproportionate impact on older populations has left us poorly equipped to address fair allocation among children. He will argue that children’s perspectives should inform decisions about their participation in vaccine research and their priority in vaccination programs.
The fourth panelist will discuss the potential need for boosters, drawing lessons from the tumultuous rollouts of COVID-19 vaccines and the inequitable distribution that resulted. By learning from the failures of prior vaccine allocation, we can identify how to best solve ethical problems related to boosters, their distribution, and where boosters fit in a world with disparate access to initial doses.
The fifth panelist will describe the Romanian COVID-19 vaccination program and compare that program to other Romanian vaccination campaigns, to reveal factors related to COVID-19 vaccine hesitancy and refusal. He will recommend ways to combat such hesitancy and refusal. Such strategies will be valuable for combatting hesitancy towards and refusal of future pandemic vaccines.
Thus, our panel identifies, analyzes, and proposes solutions to significant ethical problems related to responsibility and solidarity in the context of COVID-19. By offering valuable lessons and key insights from our experience with COVID-19 vaccines so far, our panel aims to enhance efforts to end the ongoing pandemic and to be better prepared for pandemics in the future.
Since the beginning of the SARS-Cov-2 pandemic, low- and middle-income countries (LMICs) such as those of Latin America and the Caribbean have been actively engaged in research aimed at finding safe and efficacious COVID-19 interventions, in spite of their research limitations, scarce resources, and the severity of the pandemic in the region . Such regional commitment to contribute to the global research efforts should not come as a surprise. The moral urgency to do research during emergencies was highlighted during the zika outbreak that hit Latin America and the Caribbean , which was the last Public Health Emergency of International Concern (PHEIC) before COVID-19.
Latin America and the Caribbean countries were quick to implement ethics guidance developed by the Pan American Health Organization to strategically streamline ethics review and strengthen ethics oversight of COVID-19 research. Yet several challenges remained: Adjustments were necessary throughout the course, the global production of research made the ethics oversight of ongoing studies a very difficult task , and the region faced difficulties handling the ethical use of unproven interventions outside of research, despite existing ethics guidance .
Building on ongoing work and discussion with health authorities, research ethics committees and investigators (including a series of regional dialogues on COVID-19 research ethics), this panel provides a critical reflection of the ethical challenges encountered by Latin America and the Caribbean when conducting COVID-19 research, and an assessment of lessons learned to catalyze ethical research and overall strengthen ethics preparedness for emergencies.
We will present and discuss the normative modifications that took place in 2020 in Latin American and Caribbean countries to advance ethical COVID-19 research, the COVID-19 clinical trials conducted in the region, and the revised ethical guidance (currently under development by the Pan American Health Organization and funded by the Wellcome Trust) that integrates the lessons learned from COVID-19 at regional and country levels. Those lessons are primarily on research ethics in emergencies, although some go beyond the scope of the pandemic. COVID-19 has taught us important lessons about research ethics that should be applied in non-emergency situations as well. These lessons that are key for LMICs will be discussed in the session as well, from both a country and regional perspective.
The chair of the session will be Carla Saenz (PAHO) and have the participation of a multi-country panel:
Sarah Carracedo, Peru (PAHO, Pontifical Catholic University of Peru)
Ana Palmero, Argentina (WHO, Ministry of Health in Argentina)
Sofia Salas, Chile (UDD-Clínica Alemana, PAHO/WHO Collaborating Center for Bioethics)
Freedom of speech in the public arena has become a very live topic over the last decade. In academia around the world there ongoing controversies over whether there are issues that should not be debated on university campuses. Less attention has so far been paid to the debates that take place within academic journals.
The aim of bioethics journal is not simply to act as a repository of work, but to nourish and support the development of thinking within the field. Over the last year, the editorial team of the International Journal of Feminist Approaches to Bioethics (IJFAB) have been considering this responsibility, for our journal and bioethics journals in general. Acknowledging that ‘development of thinking’ necessarily means pushing at the boundaries of settled knowledge and addressing controversial topics, many people also hold that there is a point where ‘controversial/challenging/provocative’ arguments become offensive and even (some will argue) dangerous or harmful.
In this panel, presenters will discuss the responsibilities of editors (and reviewers) towards academic freedom or freedom of expression in bioethics and public debate. The editorial team of IJFAB has recently invited open discussion of these issues via the IJFAB blog and contributions to a Special Issue, and they will present some of the content and outcomes of that discussion. Editors of other bioethics journals will also give their own accounts of the tensions that they have experienced and the decisions and policies that they produced. However, a key part of the panel will be given to open discussion between panellists and audience. Some of the areas the discussion will cover are:
• How do we define editorial responsibility to the field of bioethics, and academic discourse in general?
• Are there grounds, other than quality and relevance, for deciding a paper should not be published in a bioethics journal?
• How do we identify a paper as controversial, or as offensive, or as dangerous? Are these useful categories?
• Should editors respond if authors they have published come under attack, and if so, how?
• How can journals demonstrate openness to the concerns of individuals and groups that feel offended or attacked?
• In the context of a journal of global bioethics, what approach should editors take towards cultural differences in acceptability and expression?