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Alumni Club

Alumni Club

Qu'est-ce que l'Alumni Club ?

Les Alumni ont déjà eu le plaisir de se retrouver à trois reprises à la Fondation pour quelques jours d’ateliers. Ces sommets des Alumni permettent de se tenir au courant de l’actualité internationale d’ELSI et des politiques de développement médical et de santé.

Les Alumni sont également très heureux de partager ces moments conviviaux et privilégiés lors de belles soirées d’été.

Ces rencontres sont devenues incontournables pour celles et ceux qui souhaitent enrichir leur réseau scientifique et développer de nouvelles collaborations. Une occasion rare et attendue par tous les membres du Club des anciens de Brocher.

Les chercheurs et chercheuses qui ont séjourné à la Fondation, les organisateurs·trices d’ateliers ou de l’académie d’été sont membres du club des anciens.

Cela leur permet de se joindre aux Brocher MeetUps.

Pour regarder nos sessions précédentes et futures : En direct | Brocher Meetup ou rejoignez-nous sur notre chaîne Youtube Brocher

Brocher Alumni 2024

The Foundation was pleased to welcome from 24 to 27 June, around sixty researchers from around the world for its 4th Alumni meeting. A rich program consisting of four sessions addressed topics such as the ongoing challenges in women’s healthcare, the Rising Public Skepticism of Science in Healthcare, the Ethical Dilemmas posed by Organoids as well as AI in Healthcare Innovation.
In addition to high-level lectures and panel discussions, the debates among all the Brocher Alumni were very enriching, and they also had the opportunity to expand their respective networks in the bioethics world.

The speakers of the 4 program sessions

Françoise Baylis, Distinguished Research Professor Emerita, Dalhousie University, NTE Impact Ethics

“We Need a Country Song About Women Who Freeze Their Eggs”

It has been said that all classic country songs fit into one of four categories: “It’s all over,” “It’s not working out,” “Love and devotion,” or “The right way to live.” As social egg freezing fits into each of these categories, it might not be long before some country singer produces a dedicated song.

This presentation will show the link between social egg freezing and each of the country music categories. It will then invite the audience to reflect on whether bioethics might tamper the heartache.

Not so long ago, Sheryl Sandberg (author of Lean In) inspired women to believe they could have it all – a career and a family. So it is that in recent years career-minded women have sometimes chosen to delay family-making and to freeze their eggs. But egg freezing is not a fail-safe method of reproduction. For those whose dream of having genetically related children doesn’t work out, it may seem like “It’s all over.”

Recent studies confirm that many women who successfully freeze their eggs do not get pregnant or if they do get pregnant their pregnancy ends in miscarriage or premature birth with all the attendant complications. This could be because of the age at which the women froze their eggs, the number of eggs frozen, as well as the typical failure rates and complications of IVF. The experience for many women is that “It’s not working out” (and not only for medical reasons).

Sometimes women put their reproductive goals on ice because they don’t have a partner with whom to start a family and they are not (yet) enamoured with the idea of single parenting. Turns out that “having it all” is not just about a career and a family; “Love and devotion” are part of the equation.

For those involved in a reproductive project, the right way to live often includes ideas about the importance of having a biological relation with future offspring. In many ways, enthusiasm for genetically related children fuels the egg freezing industry. “The right way to live”, however, need not include reification of the gene.

Françoise Baylis CM, ONS, PhD, FRSC, FISC is currently with the International Science Council and Distinguished Research Professor Emerita at Dalhousie University. She is renowned for her academic research in healthcare ethics at the intersection of policy and practice. Her advocacy and activism is grounded in a commitment to “Make the powerful care”.

Baylis is a member of the Order of Canada and the Order of Nova Scotia, as well as an elected Fellow of the Royal Society of Canada and the International Science Council. In 2022, she was awarded the Killam Prize for the Humanities, and in 2023, she received the Canada Council for the Arts Molson Prize in Humanities — Canada’s most distinguished awards for humanities scholars. As well, in 2003 she was awarded the Queen Elizabeth II Platinum Jubilee Medal.

Baylis is the author of Altered Inheritance: CRISPR and the Ethics of Human Genome Editing.

Arthur Caplan, Mitty Professor of Bioethics, NYU Grossman School of Medicine

“Trust Loss in Biomedicine during the Pandemic: why and what to do next“

Public confidence in biomedical science declined precipitously around the world since the Covid-19 pandemic.

For example in 2022, only 29 percent of U.S. adults in a Pew Research Center poll said that they have a great deal of confidence that medical scientists will act in the best interests of the public, down from 40 percent in November of 2020. Other polls and studies show similarly dour findings. The pandemic undercut a long history of nearly universal trust in the value of biomedical science.

Why did this occur. Some reasons are epistemological, some sociological. Unless they are aggressively addressed trust in biomedical science is likely to remain damaged.

“Arthur Leonard Caplan is the Drs. William F and Virginia Connolly Mitty Professor and founding head of the Division of Medical Ethics at NYU School of Medicine. Before NYU, he was the Sidney D. Caplan Professor of Bioethics at the University of Pennsylvania Perelman School of Medicine, where he established the Center for Bioethics and the Department of Medical Ethics. Caplan has also held positions at the University of Minnesota, University of Pittsburgh, and Columbia University, and earned his PhD from Columbia University.

He has authored or edited 35 books and over 870 peer-reviewed papers. Notable works include “Vaccination Ethics and Policy” and “Getting to Good: Research Integrity in Biomedicine.” Prof. Caplan has served on numerous national and international committees, advising on ethical issues ranging from biobanking and human cloning to blood safety and organ trafficking. Since 2015, he has chaired the Compassionate Use Advisory Committee (CompAC) for Johnson & Johnson’s Janssen Pharmaceuticals.

Arthur Caplan is a prominent media commentator on bioethics, contributing to WebMD/Medscape, WGBH radio, WOR radio, and KNX-CBS radio, among others. He has received numerous awards, including the McGovern Medal, the Franklin Award, and recognition as a significant influencer in science and health care by Discover magazine, Modern Health Care magazine, the National Journal, Nature Biotechnology, and Scientific American.

During the COVID-19 pandemic, he played a pivotal role in advising on ethical frameworks for drug and vaccine distribution, advising companies like Moderna, and contributing to policy development for sports, recreation and health systems.

Prof. Caplan has been awarded the Patricia Price Browne Prize in Biomedical Ethics, the Public Service Award from the National Science Foundation/National Science Board, the Rare Impact Award from the National Organization for Rare Disorders, and the Innovation Award from the FDA’s Reagan/Udall Foundation. He has received eight honorary degrees.”

Emmanuel Delille, Associate Researcher, Centre Marc Bloch, Humboldt University, Cultural History, History of Science and History of Medicine

“Public skepticism in the field of mental health and health education issues“

In recent decades, the field of mental health has been rocked by scandals caused by unethical medical experiments, which have echoed loudly in public opinion. Two well-known case studies are those of Ewen D. Cameron in Canada and Roland Kuhn in Switzerland. These physicians endangered the lives of their patients and caused irreversible suffering in order to pursue pseudo-scientific experiments. Moreover, these events took place long after the doctors of the Nazi regime had been convicted at the Nuremberg Military Tribunal, and the “Nuremberg Code” (1948) had been published. After recalling the main historical features of these case studies, we will raise the question of the lack of analysis of health scandals in health education.

Dr. Habil. Emmanuel Delille is a historian of science and health. He is currently researcher at the Centre Marc Bloch (Berlin) and teaches contemporary history at the Johannes Gutenberg University Mainz.

“Skepticism of Science in Health Care: Who Doesn’t Trust Whom and Why?”

Polls show that growing skepticism of biomedical science is not uniform across the population, at least in the United States. It clusters around various demographic and political factors, notably age, education level, and conservative political leanings. Why might that be? Scientists like to think of their work as the paradigm of rational analysis based on facts (empirical observations) and logic (scientific method) so that skepticism of it must result from either ignorance of facts or misunderstanding of scientific reasoning. However, all human judgments, including those of scientists themselves, are shaped by cognitive biases. For example, confirmation bias makes new findings seem more trustworthy if they confirm previous findings, and avoidance of cognitive dissonance leads to discounting findings that conflict with deeply held philosophical beliefs or opinions of trusted leaders. These biases can lead further to distrust of the motives of those espousing discordant views. This phenomenon helps to explain the ineffectiveness of efforts to rebuild trust with empirical information and scientific explanations alone. To respond to underlying motivations, responses to science skepticism must consider the factors other than evidence and scientific reasoning that shape perceptions and the ways in which they vary between people.

Robert I. Field is professor of law at the Thomas R. Kline School of Law and professor of health management and policy at the and Dornsife School of Public Health of Drexel University. He is also faculty director of the Law School’s Center for Law and Transformational Technology. He is the author of Mother of Invention: How the Government Created “Free-Market” Health Care and Health Care Regulation in America: Complexity, Confrontation and Compromise, both published by Oxford University Press. Other publications have addressed ethical issues in vaccination, privacy of genetic and neurotechnology data, private equity investment in health care, and comparative health reform. He is the recipient of a Fulbright Specialist Award for teaching in New Zealand, an Erasmus Mundus scholarship for lectures in France and Denmark, and an appointment as Chaire des Ameriques from the Institut Des Ameriques de Rennes for research on health system structure in France. He was in residence at Fondation Brocher in 2012. Before joining the Drexel faculty, he founded and chaired the Department of Health Policy and Public Health at University of Sciences in Philadelphia.

Solange Ghernaouti, Professor, Dr., University of Lausanne, Swiss Cybersecurity Advisory and Research Group

“Beyond the risks, the ethical challenges of AI dependency in healthcare”

Healthcare professionals and patients are increasingly dependent on information technologies and artificial intelligence products of which it is difficult to guarantee an adequate level of security and reliability. Even if AI can be part of the solution, its abuse and misuse, as well as its use for criminal and conflict-related purposes, are problematic. In addition to security and safety matters, the ethical and strategic issues raised by the algorithmic governance of healthcare through the use of data and artificial intelligence systems will be addressed.

Professor at the University of Lausanne, Solange Ghernaouti holds a PhD in computer science. She heads the Swiss Cybersecurity Advisory & Research Group and chairs the Fondation SGH – Cybermonde. As an international expert in cybersecurity, she is specialized in complex risks management associated with technoscience .

A Chevalier of the Légion d’honneur and winner of the Médaille d’or du Progrès, she is a member of the Swiss Academy of Technical Sciences and the Swiss Commission for UNESCO. The author of some forty books, including “Crime, Conflict & Security in Cyberspace” (EPFL Press & translated into Chinese), she is regularly ranked by the media as one of the world’s leading scientists.

Søren Holm, Professor of Bioethics, The University of Manchester,

“Neural organoids, potential consciousness, and ethical consequences”

The rapid developments in organoid and organ-on-chip research raises a number of ethical issues. Some organoids and potential uses of organoids, e.g. renal or hepatic organoids raise no significantly new ethical or regulatory issues, partly because they create no particular ontological or epistemological uncertainties. Other organoids, e.g. neural and gonadal organoids, and embryo models raise new issues, or re-actualise older issues in a new form. In this talk I will focus on the ethical issues raised by the creation of neural, particularly cortical organoids. Such organoids may/will as research and technology develop become more and more complex, and may potentially develop sentience or some form of phenomenological conscience. The talk will discuss the ethical implications of this possibility, and the very significant problems in predicting and ascertaining whether a particular neural organoid has developed functions that change its moral status from that of a mere biological artefact to something more.

Søren Holm is a Danish doctor and philosopher. He is Professor of Bioethics at The University of Manchester, and Professor of Medical Ethics (part-time) at the University of Oslo. He is just finishing co-ordinating the EU Commission funded HYBRIDA project on the ontological, epistemological, and regulatory uncertainties in organoid and organ-on-chip research and future use. He has previously published on a wide range of issues in medical ethics and the philosophy of medicine.

Søren Holm

Professor of Bioethics, Centre for Social Ethics and Policy, Department of Law, School of Social Sciences, University of Manchester, Manchester M13 9PL, UK

Academic Director of Research Governance, Ethics and Integrity

Chair of UREC 5

“Human brain organoids, consciousness, and moral status”

Organoids are biological entities cultivated in vitro to mimic the structure and the function of the corresponding organ. This technology is much promising and maybe one the most relevant game-changers in biomedicine both for the study of healthy development and the treatment of many pathologies. Ethical issues surrounding organoids are related to safety, informed consent for donors, biobanking, patenting, commercial uses, transplants, and so on. They are common to all kinds of organoids. I’d like to specially focus on Human cerebral organoids (HCOs), which are an in vitro three-dimensional model of early neural development, aimed at modelling and understanding brain development and neurological disorders. In just a few years, there has been a rapid and considerable progress in the attempt to create a brain model capable of showcasing the structure and functions of the human brain. There are still strong limitations to address, including the absence of vascularization that makes it difficult to feed the central layers of organoids. Nevertheless, some important features of the nervous system have recently been observed: HCOs manifest electrical activity, are sensitive to light stimulation and are able to connect to a spinal cord by sending impulses that make a muscle contract. Recent data show that cortical organoid network development at 10 months resembles some preterm babies’ electroencephalography (EEG) patterns. In the light of the fast pace of research in this field, one might consider the hypothesis that HCOs might show some rudimentary form of consciousness. This possibility raises important ethical questions for the use of human brain organoids in healthcare which will be addressed.

Andrea Lavazza, a moral philosopher and neuroethicist, is a senior research fellow at the Centro Universitario Internazionale (Arezzo, Italy) and adjunct professor in Neuroethics at the Milan University and the Pavia University (Italy). His main research interests are at the intersection of philosophy, cognitive sciences, and new technologies. In particular, he is active in several subfields of neuroethics (free will, human enhancement, memory-modulation, brain organoids, neurotechnologies), and in related fields such as philosophy of mind, AI ethics, epistemology of expertise. He has published 160 papers and chapters in scientific journals or collections, and 15 books. His most recent publications are “Philosophy, Expertise, and the Mith of Neutrality” (edited with M. Farina, Routledge) and “Expertise: Philosophical Perspectives” (edited with M. Farina and D. Pritchard, Oxford UP).

Florencia Luna, Director, Researcher, FLACSO, CONICET (National Scientific and Technological Research Council), Philosophy, bioethics

“Is women’s Health better addressed today? What challenges remain?”

Though it can be said that women´s health is better addressed today (there is more gender recognition and bioethics provides a strong feminist literature and reflection); there are still challenges of various sorts. For example, even if there was a major focus put on reproductive health, many issues are not yet solved and others like the abortion legalization has had setbacks in countries that may influence others. In addition, women´s health is not only reproductive health; an integral view of it is still lacking. Other challenges arise in relation to the context: one is the situation of women in the North and another the one of women in the South. In this presentation I will sketch some of these different challenges.

Florencia Luna, M.A, Ph D. Superior Researcher at CONICET (National Scientific and Technological Research Council), Argentina. Director of the Program of bioethics at FLACSO, Argentina. President of the International Association of Bioethics (IAB) (2003-2005). She is Expert for the World Health Organization (WHO), Director of the FLACSO’s Collaborative Center for WHO and the Panamerican Health Organization (PAHO) (2016-) and was member of the Scientific and Advisory Committee (STAC) of the Department of Tropical Diseases Research (TDR) from WHO (2011-2016). Member of the external Scientific Committee of Brocher Foundation.

Ruth Macklin, Distinguished University Professor Emerita – Albert Einstein College of Medicine United States, Bioethics – Medical ethics

“Combatting Public Skepticism in Health Care: Challenges and Responses”

In order to combat the rising public skepticism of science in healthcare, the first step is to identify the causes of the skepticism. A second step is to figure out ways of combatting these causes. The third step–clearly the most challenging–is to implement effective ways of reducing the skepticism. Three current examples can illustrate this sequence. The first is the so-called “anti-vax” movement, which denigrates vaccinations that can prevent or mitigate the severity of an infectious disease. The second is misinformation or disinformation about the known causes and treatments of various diseases. The third is an increase in world-wide populism, which has given rise to skepticism of elites, including physicians, scientists, and other authoritative sources of health-related information. While there have always been skeptics of medical and scientific developments, the magnitude of today’s version is created by the widespread use of social media and the emerging use of artificial intelligence (AI).

Ruth Macklin is Distinguished University Professor Emerita (Bioethics) at Albert Einstein College of Medicine in the Bronx, New York, USA. She received a BA with Distinction from Cornell University and an MA and PhD in Philosophy from Case Western Reserve University. She has close to three hundred publications in professional journals and scholarly books in bioethics, law, medicine, philosophy, and the social sciences. She is author or editor of thirteen books, including Against Relativism (1999), Double Standards in Medical Research in Developing Countries (2004), and Ethics in Global Health: Research, Policy and Practice (2012). Dr. Macklin served as chair of the Ethical Review Committee at UNAIDS and was a member of the Global Reference Group on HIV/AIDS and Human Rights. She has been a consultant to the World Health Organization since 1989 and served on WHO committees in the Department of Reproductive Health and the HIV Vaccine program. She was President of the International Association of Bioethics in 1999-2001 and has remained active in the field during her retirement from Einstein.

Stéphanie Pache, Professor, UQAM, Sociology

“Feminist health activism in flux: the case of menstrual health”

The second wave of feminist movements challenged the medicalization of the female body and the role of health professionals in the oppression of women. Their critique pointed out pathologizing theories about menstruation, menopause, and hormones. They denounced the lack of scientific evidence and the medicalization of female physiology. We propose to renew the analysis of the controversies on the medicalization of menstrual symptoms by considering the current claims of women about their menstrual health.

Our research conducted in Montreal (Canada) shows that in a context of increasing information resources and alternative treatments, the role of the medical profession in general must readjust to informed patients whose expectations concern not only their medical expertise, but the quality of the therapeutic interaction. Most demand a more egalitarian relationship with their doctors, but this remains difficult for many practitioners to achieve. Medical providers are the first providers consulted about menstrual problems and therefore play an important pedagogical role in the dissemination of « menstrual norms » and thus in identifying which perimenstrual issues would be pathological. By comparing their multiple experiences with health providers, participants often draw what constitutes a “good” care relationship, a “good” interview or follow-up, etc. We observed how the distinctions between health professionals tend to be between physicians and non-physicians, with the non-medical practitioners being praised for their interpersonal skills rather than for their expertise.

The feminist critique about menstrual health is therefore still targeting medicine, but we defend that the knowledge/power issue is overshadowed by a call for “interpersonal equality.” This calls into question the role of feminism in improving women’s healthcare. Feminist scholars and activists have denounced medical practices unsupported by scientific studies, which causes disputable medical practices (e.g. the debate surrounding hormone replacement therapy); they also called for research on understudied issues specific to women, such as endometriosis. Another part of feminist activism rejected medical power and supported self-help practices outside of traditional healthcare systems. It seems that if the feminist target is still medical power, women feel that now is the time to bring equality in medical practices through more balanced caring relationships.

Stéphanie Pache is Associate Professor of Sociology of Gender and Sexuality in the Department of Sociology at the Université du Québec à Montréal (UQAM). Her dissertation, Politicizing Psychology, examined the history of feminist psychology. Her postdoctoral research conducted at Harvard University and Vanderbilt University analyzed the process of making interpersonal violence a public health issue in the United States. Her research focuses on the social and political issues surrounding health as a field of scientific, clinical, and discursive practices. Her recent work continues her study of the role of psychological disciplines in contemporary politics and of the relations between gender and health as social structures. Her current project examines issues of expertise and the legacy of the feminist critique of medicalization in contemporary practices related to menstrual health.

“Organoids and imaginations of future wellbeing: What can we learn from discussions about previous socio-technological advances?”

Our societies and international institutions have been confronted with several waves of scientific and technological development. Each seems to provoke calls for renewed ethical discussions and public engagement. In the past decades, we can cite, for example, starting in 1970s recombinant DNA, new reproductive technologies, genomics research, cloning, stem cells, neuroscience, social media, and artificial intelligence. Some of these developments (e.g., genomics) have not panned out in terms of anticipated disruptive effects while others (e.g., social media, AI) seem to have caught us socially and legally unprepared in terms of their concrete practical implications and ramifications. Looking, back and looking forward, how should our ethical imagination of the impact of organoids on future wellbeing and flourishing be informed by what we can learn from the various ethical responses to which many of us have participated? I will take a bird’s eye view to identify a few observations to then fuel discussion and reflection in the group about how the implications of organoids could be approached constructively.

Dr. Racine is a leading international researcher in bioethics with recognized contributions to the development of neuroethics and pragmatic ethics. He is the author of 225 peer-reviewed publications and several books, including the forthcoming monograph, The Theory of Deliberative Wisdom at MIT Press. Inspired by philosophical pragmatism, his research aims to bring to the forefront the lived experience of ethically problematic situations by patients and stakeholders and then to resolve them collaboratively through deliberative and evidence-informed processes such as living labs and participatory action research projects.

Ulf Schmidt, Professor, University of Hamburg, History of Medicine, Science, and Medical Ethics

“Women’s Reproductive Rights in Post-War Europe”

On June 2021, a European Parliament resolution declared sexual and reproductive rights to be a fundamental aspect of women’s rights and gender equality. The resolution came in the wake of a law passed in Poland in January 2021, which effectively outlawed abortion and was the culmination of a steady attack on women’s reproductive freedom since the collapse of socialism in 1989. While there have been particular significant improvements in reproductive rights and sexual health since the end of the Second World War in Europe, the case of Poland’s abortion law points towards the potential fragility of these rights. There have not only been setbacks to women’s reproductive rights in the context of abortion laws in recent years, but also with regard to policies associated with contraception. While contraceptives are safer today and of better material quality than they have ever been – and are also free to all in many European countries – in Germany, for example, birth control and abortion are not currently covered by health insurance, meaning that women must pay themselves, whereas such procedures were free in East Germany. In the UK, government cuts to local councils has resulted in a drastic reduction of sexual health centres – which were first established on a mass scale in the 1970s and 1980s. Given the increase of sexually transmitted diseases, such measures pose both an individual and public health threat. Examining the history of women’s reproductive rights in post-war Europe – which incorporate access to abortion, contraception, sexual health, sex education, sexual pleasure, access to fertility treatment, and safe pregnancy – demonstrates that, overall, linear, steady ‘progress’ has not been achieved in this field since the end of the Second World War. Policies and practices associated with reproduction – which have had tangible impacts on the lives of millions of women – have been varyingly shaped by different cultural, religious, political and ideological contexts. While evolving medical technologies such as improvements in IVF point towards exciting possibilities for reproductive life, governments, medical professionals and policymakers must ensure universal reproductive rights for all.

ULF SCHMIDT is Senior Professor of Modern History in the Faculty of Humanities at the University of Hamburg (UHH), founding-director of the Centre for the Study of Health, Ethics, and Society (CHES), and a Fellow of the Royal Historical Society. His research interests are in the area of the history of modern medical ethics, warfare and policy in twentieth-century Europe and the United States. He is the author, among others, of Justice at Nuremberg: Leo Alexander and the Nazi Doctors’ Trial (2004); Karl Brand: The Nazi Doctor. Medicine and Power in the Third Reich (2007); Secret Science. A Century of Poison Warfare and Human Experiments (2015); and Ethical Research: The Declaration of Helsinki, and the Past, Present, and Future of Human Experimentation (2020). Professor Schmidt has recently been awarded a six-year ERC-Synergy grant on “Taming the European Leviathan: The Legacy of Post-War Medicine and the Common Good”.

Georg Starke, Postdoctoral Researcher, EPFL, College of Humanities, Intelligent Systems Ethics Group, Research Associate, University of Munich, Institute for History and Ethics of Medicine

“Postdoctoral Researcher, Technical University of Munich, Institute for History and Ethics of Medicine, and EPFL, College of Humanities”

Applications of Artificial Intelligence (AI) in healthcare have emerged as a pivotal aspect of the ongoing digital transformation of health systems worldwide. Despite the potential benefits across diverse medical domains, one significant barrier to successful AI adoption is posed by the opacity of many AI models, often precluding comprehensive explanations and human understanding of individual model outputs. Recognizing the risks and uncertainty involved in AI-enabled decisions, voices from industry, policymakers, and research have suggested trust as an attitude for engaging with opaque clinical AI systems. Yet, in the philosophical and ethical literature on medical AI, the notion of trust and the conditions of trustworthiness remain fiercely debated. Looking at real-life applications of AI in healthcare, this talk brings together conceptual considerations and empirical evidence to unravel some of the epistemic and ethical challenges driving this ongoing debate. Focusing on the interplay between the explainability of medical AI and trust, I argue why, counterintuitively, more knowledge about clinical AI models may not necessarily correlate with increased trust and sketch practical implications of this conclusion.

Georg Starke is a postdoctoral researcher at the College of Humanities at EPFL and at the Institute of History and Ethics of Medicine at the Technical University of Munich. Trained as philosopher and physician, he conducts research at the intersection of AI ethics, medical ethics, and neuroscience. His recent work focuses on the notion of trust in medical AI as well as on intelligent neurotechnology, scrutinizing the trustworthiness of AI-enabled systems deployed in neurology and psychiatry.

“Privacy, data protection, and data sharing practices: exploring their impact on bias in medical AI”

The development of medical AI is reliant on access to high quality and diverse data sets. While data protection regulations have strengthened the protection of personal information, they are hindering the sharing of genetic and health data. This will limit the datasets on which the medical AI can be trained, limiting the applicability of the resulting AI to those populations from which data can be accessed. The General Data Protection Regulation (GDPR) and its fragmented implementation in the context of scientific research is one such example, and it is limiting the sharing of data for the development and training of medical AI outside of Europe. The proposed European Health Data Space (EHDS) will be welcomed, as if passed, the EHDS will create an obligation to share electronic health data and thereby “unleash the benefits of the secondary use of electronic health data”. Questions remain, however, as to whether this and other regulatory proposals will address the data sharing challenges.

This paper will discuss the EHDS, what it means for medical AI, and offer reflections on how to address anticipated ethico-legal governance gaps.

Dr Ciara Staunton is a Senior Researcher at the Institute for Biomedicine, Eurac Research (Italy) and a Consultant to the WHO on WHO principles for human genomic data sharing. In addition, she is an Honorary Research Fellow at the University of Kwazulu-Natal. Her research focuses on the governance of new and emerging technologies, in particular stem cell research, genomic research and biobanking, and the use of health data in research. Ciara is currently a consultant to many global health institutions as the NICD. She is a member of a number of international advisory boards providing ethico-legal oversight on these topics and is a member of the National Irish COVID-19 Biobank – Research Ethics Committee (NICB-REC).

Ross Upshur, Dr. – Former Director of the Joint Centre for Bioethics University of Toronto

“Automation Bias and the Ethics of Abdication”

AI and related information technologies are evolving at an unprecedented speed, such that the landscape of ethical issues may well be significantly altered in the time between writing and presenting the material in this abstract. The technologies themselves have become increasingly diverse and have found extensive application in all domains of the human lifeworld. The advent of multi-modal platforms has increased the complexity of both application and ethical governance of information technology.

In this presentation, I propose to focus on selected aspects of the advent of AI for clinical medicine. Specifically, I will explore the idea of abdication with respect to both the spectre of deferring components of clinical competence to technology-based solutions as well as policy decisions to invest large amounts of funding into the development of multimodal platforms. In both cases, arguments are made that AI based systems will alleviate or address current shortcomings of health practitioner and health system performance. I will argue that such arguments abdicate responsibility to invest in solutions to improve current human oriented health systems. Arguments for the inevitability of change need to be critically examined from a normative perspective.

Ross Upshur BA (Hons.), MA, MD, MSc, MCFP, FRCPC, FCAHS is currently the Dalla Lana Chair in Clinical Public Health and Head of the Division of Clinical Public Health at the Dalla Lana School of Public Health, At the University of Toronto, he is a Professor in the Dalla Lana School of Public Health and the Department of Family and Community Medicine, Associate Director of the Collaborative Centre for Climate, Health and Sustainable Care, Affiliate Member of the Institute for the History and Philosophy of Science and Technology, Member of the Centre for Environment and Member of the Joint Centre for Bioethics. He serves as Co-chair of the WHO Ethics and Governance Working Group, chairs the Canadian College of Family Physicians Ethics Committee and is Special Advisor to the Ethics Review Board of Doctors Without Borders. Research interests span multiple domains at the intersection of ethics, epistemology, clinical medicine and public health with applications to climate change, pandemics and artificial intelligence. He is an elected Fellow of the Hastings Center and the Canadian Academy of Health Sciences.

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