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1. Data Sharing For Precision Medicine: Policy Lessons And Future Directions.

Author

Blasimme A, Fadda M, Schneider M, and Vayena E

Subjects
Databases, Factual, Female, Forecasting, Humans, Male, Policy Making, Practice Guidelines as Topic, Precision Medicine trends, Quality Control, Retrospective Studies, United States, Health Policy legislation & jurisprudence, Information Dissemination legislation & jurisprudence, Precision Medicine standards, Privacy
Abstract

Data sharing is a precondition of precision medicine. Numerous organizations have produced abundant guidance on data sharing. Despite such efforts, data are not being shared to a degree that can trigger the expected data-driven revolution in precision medicine. We set out to explore why. Here we report the results of a comprehensive analysis of data-sharing guidelines issued over the past two decades by multiple organizations. We found that the guidelines overlap on a restricted set of policy themes. However, we observed substantial fragmentation in the policy landscape across specific organizations and data types. This may have contributed to the current stalemate in data sharing. To move toward a more efficient data-sharing ecosystem for precision medicine, policy makers should explore innovative ways to cope with central policy themes such as privacy, consent, and data quality; focus guidance on interoperability, attribution, and public engagement; and promote data-sharing policies that can be adapted to multiple data types.

Published
2018
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2. Digital health: meeting the ethical and policy challenges.

Author

Vayena E, Haeusermann T, Adjekum A, and Blasimme A

Subjects
Humans, Privacy, Social Responsibility, Switzerland, Trust, Biomedical Technology ethics, Data Collection ethics, Health Policy trends
Abstract

Digital health encompasses a wide range of novel digital technologies related to health and medicine. Such technologies rely on recent advances in the collection and analysis of ever increasing amounts of data from both patients and healthy citizens. Along with new opportunities, however, come new ethical and policy challenges. These range from the need to adapt current evidence-based standards, to issues of privacy, oversight, accountability and public trust as well as national and international data governance and management. This review illustrates key issues and challenges facing the rapidly unfolding digital health paradigm and reflects on the impact of big data in medical research and clinical practice both internationally and in Switzerland. It concludes by emphasising five conditions that will be crucial to fulfil in order to foster innovation and fair benefit sharing in digital health.

Published
2018
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3. Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study

Author

Brian Hutler, Alessandro Blasimme, Rachel Gur-Arie, Joseph Ali, Anne Barnhill, Amelia Hood, Jeffrey Kahn, Nancy L. Perkins, Alan Regenberg, and Effy Vayena

Subjects
Issues, ethics and legal aspects, Health Policy, General Medicine
Abstract

This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. The ethical and effective use of DCT in the future requires a new governance approach that is better suited to this novel use of mobile phone data to promote public health.”

Published
2022

4. Big Data and Dementia: Charting the Route Ahead for Research, Ethics, and Policy

Author

Marcello Ienca, Effy Vayena, and Alessandro Blasimme

Subjects
dementia, big data, ethics, health policy, Alzheimer’s disease, real-world evidence, Medicine (General), R5-920
Abstract

Emerging trends in pervasive computing and medical informatics are creating the possibility for large-scale collection, sharing, aggregation and analysis of unprecedented volumes of data, a phenomenon commonly known as big data. In this contribution, we review the existing scientific literature on big data approaches to dementia, as well as commercially available mobile-based applications in this domain. Our analysis suggests that big data approaches to dementia research and care hold promise for improving current preventive and predictive models, casting light on the etiology of the disease, enabling earlier diagnosis, optimizing resource allocation, and delivering more tailored treatments to patients with specific disease trajectories. Such promissory outlook, however, has not materialized yet, and raises a number of technical, scientific, ethical, and regulatory challenges. This paper provides an assessment of these challenges and charts the route ahead for research, ethics, and policy.

Published
2018
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6. Future-proofing biobanks’ governance

Author

Alessandro Blasimme, Felix Gille, and Effy Vayena

Subjects
Knowledge management, Quality management, Databases, Factual, business.industry, Corporate governance, Communication, Health Policy, State of affairs, Certification, Review Article, Biobank, Trustworthiness, Medical research, Informed consent, Accountability, Genetics, Government Regulation, Humans, business, Genetics (clinical), Confidentiality, Biological Specimen Banks
Abstract

Good biobank governance implies—at a minimum—transparency and accountability and the implementation of oversight mechanisms. While the biobanking community is in general committed to such principles, little is known about precisely which governance strategies biobanks adopt to meet those objectives. We conducted an exploratory analysis of governance mechanisms adopted by research biobanks, including genetic biobanks, located in Europe and Canada. We reviewed information available on the websites of 69 biobanks, and directly contacted them for additional information. Our study identified six types of commonly adopted governance strategies: communication, compliance, expert advice, external review, internal procedures, and partnerships. Each strategy is implemented through different mechanisms including, independent ethics assessment, informed consent processes, quality management, data access control, legal compliance, standard operating procedures and external certification. Such mechanisms rely on a wide range of bodies, committees and actors from both within and outside the biobanks themselves. We found that most biobanks aim to be transparent about their governance mechanisms, but could do more to provide more complete and detailed information about them. In particular, the retrievable information, while showing efforts to ensure biobanks operate in a legitimate way, does not specify in sufficient detail how governance mechanisms support accountability, nor how they ensure oversight of research operations. This state of affairs can potentially undermine biobanks’ trustworthiness to stakeholders and the public in a long-term perspective. Given the ever-increasing reliance of biomedical research on large biological repositories and their associated databases, we recommend that biobanks increase their efforts to future-proof their governance., European Journal of Human Genetics, 28, ISSN:1476-5438, ISSN:1018-4813

Published
2020

8. Ethics review of big data research : what should stay and what should be reformed?

Author

Ferretti, Agata, Ienca, Marcello, Sheehan, Mark, Blasimme, Alessandro, Dove, Edward S., Farsides, Bobbie, Friesen, Phoebe, Kahn, Jeff, Karlen, Walter, Kleist, Peter, Liao, S. Matthew, Nebeker, Camille, Samuel, Gabrielle, Shabani, Mahsa, Rivas Velarde, Minerva, and Vayena, Effy

Subjects
Biomedical Research, Debate, Medical philosophy. Medical ethics, Ethics review, CONSENT, AUTHORITY, Advisory Committees, ddc:616.0757, Ethics, Research, Health(social science), Issues, Research ethics, Big data, Medicine and Health Sciences, IRBs, Humans, PARTICIPANTS, Biomedical research, HEALTH RESEARCH, Ethics, RISK, Ethics Committees, R723-726, Research, Health Policy, OVERSIGHT, GOVERNANCE, RECs, ethics and legal aspects, Generic health relevance, Applied Ethics, COMMITTEES, ACCESS, Ethics Committees, Research
Abstract

BackgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts.Main textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science.ConclusionsWe believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.

Published
2021

9. Whats next for COVID-19 apps? Governance and oversight

Author

Effy Vayena and Alessandro Blasimme

Subjects
2019-20 coronavirus outbreak, Multidisciplinary, Coronavirus disease 2019 (COVID-19), SARS-CoV-2, Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), Community participation, Corporate governance, Health Policy, Pneumonia, Viral, Community Participation, COVID-19, Public administration, Mobile Applications, Betacoronavirus, Government regulation, Privacy, Government Regulation, Humans, Contact Tracing, Coronavirus Infections, Pandemics, Health policy
Abstract

Adaptive governance can help earn social license

Published
2020
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10. Why Include the Public in Genome Editing Governance Deliberation?

Author

Alessandro Blasimme

Subjects
International debate, Gene Editing, Health (social science), Mutual engagement, business.industry, Genetically engineered, Genome, Human, Health Policy, media_common.quotation_subject, Corporate governance, Community Participation, Genetic Therapy, Public relations, Deliberation, Issues, ethics and legal aspects, Genome editing, Paradigm shift, Political science, Government Regulation, Humans, Public decision making, CRISPR-Cas Systems, business, media_common
Abstract

With the birth of genetically engineered twins in November 2018, international debate about human genome editing governance has moved from an emphasis on mutual engagement among multiple stakeholders to a self-regulatory model enacted through high-level expert groups with little or no public input. This article reconstructs this paradigm shift and suggests that inclusive public deliberation should still have a role in public decision making about genome editing.

Published
2019

11. Health Research with Big Data: Time for Systemic Oversight

Author

Effy Vayena and Alessandro Blasimme

Subjects
Big Data, Biomedical Research, Big data, 0603 philosophy, ethics and religion, Article, Access to Information, 03 medical and health sciences, 0302 clinical medicine, Informed consent, Reflexivity, Humans, 030212 general & internal medicine, Flexibility (engineering), Informed Consent, Information Dissemination, business.industry, Health Policy, Common ground, 06 humanities and the arts, General Medicine, Public relations, Pipeline (software), United States, Issues, ethics and legal aspects, 060301 applied ethics, Business, Confidentiality
Abstract

To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features (adaptivity, flexibility, monitoring, responsiveness, reflexivity, and inclusiveness) and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders acquire a common substantive orientation.

Published
2018

12. Digital bioethics: introducing new methods for the study of bioethical issues

Author

Alessandro Blasimme, Manuel K. Schneider, and Effy Vayena

Subjects
Health (social science), Scope (project management), business.industry, Health Policy, Information technology, Bioethics, Space (commercial competition), Domain (software engineering), Issues, ethics and legal aspects, Arts and Humanities (miscellaneous), Engineering ethics, Computational sociology, Sociology, Normative analysis, business, TRACE (psycholinguistics)
Abstract

The online space has become a digital public square, where individuals interact and share ideas on the most trivial to the most serious of matters, including discussions of controversial ethical issues in science, technology and medicine. In the last decade, new disciplines like computational social science and social data science have created methods to collect and analyse such data that have considerably expanded the scope of social science research. Empirical bioethics can benefit from the integration of such digital methods to investigate novel digital phenomena and trace how bioethical issues take shape online.Here, using concrete examples, we demonstrate how novel methods based on digital approaches in the social sciences can be used effectively in the domain of bioethics. We show that a digital turn in bioethics research aligns with the established aims of empirical bioethics, integrating with normative analysis and expanding the scope of the discipline, thus offering ways to reinforce the capacity of bioethics to tackle the increasing complexity of present-day ethical issues in science and technology. We propose to call this domain of research in bioethicsdigital bioethics.

Published
2021

13. Biomedical Big Data: New Models of Control Over Access, Use and Governance

Author

Alessandro Blasimme and Effy Vayena

Subjects
Big Data, Health (social science), Biomedical Research, media_common.quotation_subject, Data management, Internet privacy, Big data, Datasets as Topic, Medical law, 0603 philosophy, ethics and religion, Trust, Data governance, Ethics, Research, 03 medical and health sciences, Symposium: Ethics and Epistemology of Big Data, 0302 clinical medicine, Health Information Management, Informed consent, Control, Humans, Confidentiality, 030212 general & internal medicine, media_common, Ethics, Governance, Informed Consent, business.industry, Privacy, Health Policy, 06 humanities and the arts, Social Control, Formal, Government, Personal Autonomy, 060301 applied ethics, Patient Participation, business, Personally identifiable information, Autonomy
Abstract

Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as mechanisms of control, are put under pressure. In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data diminish individual control, the synergistic effect of new data management models can in fact improve it., Journal of Bioethical Inquiry, 14 (4), ISSN:1872-4353

Published
2017

14. Genes wide open: Data sharing and the social gradient of genomic privacy

Author

Tobias Haeusermann, Bastian Greshake Tzovaras, Alessandro Blasimme, Marta Fadda, and Effy Vayena

Subjects
0301 basic medicine, Genetic Research, Health (social science), Computer science, Social gradient, Genomics, 030105 genetics & heredity, 03 medical and health sciences, Direct-To-Consumer Screening and Testing, medicine, Electronic Health Records, Humans, Genetic Privacy, Gene, Computer Security, Qualitative Research, Genetic testing, Social Responsibility, medicine.diagnostic_test, Information Dissemination, Health Policy, Data science, Data sharing, Philosophy, Open data, Qualitative research, Follow-Up Studies
Abstract

This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on interviewees' understanding of privacy. Participants reported that the likelihood and the magnitude of privacy harms depend on gender, ethnicity, sexual orientation, the stigma associated with certain clinical conditions, the existence of adequate legislation, and the nature of national health care systems. Some participants expressed the view that those who enjoy higher socioeconomic status or are better protected by their country's legislation have a responsibility to share their genetic data. Our study shows that people who share their genetic data publicly online-far from being insensitive to privacy risks-have a complex understanding of the social, relational, and contextual nature of genetic privacy.

Published
2019

15. 'Tailored-to-You': Public Engagement and the Political Legitimation of Precision Medicine

Author

Effy Vayena, Alessandro Blasimme, University of Zurich, and Vayena, Effy

Subjects
0301 basic medicine, 1207 History and Philosophy of Science, business.industry, Health Policy, 610 Medicine & health, 10060 Epidemiology, Biostatistics and Prevention Institute (EBPI), General Medicine, Public administration, Precision medicine, 2719 Health Policy, 2910 Issues, Ethics and Legal Aspects, 03 medical and health sciences, Issues, ethics and legal aspects, Politics, 030104 developmental biology, History and Philosophy of Science, Legitimation, Law, Medicine, Public engagement, business
Published
2016

16. Data Sharing For Precision Medicine: Policy Lessons And Future Directions

Author

Effy Vayena, Manuel Schneider, Alessandro Blasimme, and Marta Fadda

Subjects
Male, Quality Control, 0301 basic medicine, Knowledge management, Databases, Factual, Computer science, Precondition, 03 medical and health sciences, 0302 clinical medicine, Informed consent, Humans, 030212 general & internal medicine, Precision Medicine, Policy Making, Retrospective Studies, Information Dissemination, business.industry, Health Policy, Precision medicine, Degree (music), United States, Data sharing, 030104 developmental biology, Privacy, Practice Guidelines as Topic, Female, business, Forecasting
Abstract

Data sharing is a precondition of precision medicine. Numerous organizations have produced abundant guidance on data sharing. Despite such efforts, data are not being shared to a degree that can trigger the expected data-driven revolution in precision medicine. We set out to explore why. Here we report the results of a comprehensive analysis of data-sharing guidelines issued over the past two decades by multiple organizations. We found that the guidelines overlap on a restricted set of policy themes. However, we observed substantial fragmentation in the policy landscape across specific organizations and data types. This may have contributed to the current stalemate in data sharing. To move toward a more efficient data-sharing ecosystem for precision medicine, policy makers should explore innovative ways to cope with central policy themes such as privacy, consent, and data quality; focus guidance on interoperability, attribution, and public engagement; and promote data-sharing policies that can be adapted to multiple data types.

Published
2018

17. Digital health: meeting the ethical and policy challenges

Author

Afua Adjekum, Effy Vayena, Alessandro Blasimme, Tobias Haeusermann, Haeusermann, Tobias [0000-0002-5880-7873], and Apollo - University of Cambridge Repository

Subjects
personalised health, 020205 medical informatics, Big data, Biomedical Technology, digital health, 02 engineering and technology, Trust, Data governance, digital ethics, 03 medical and health sciences, 0302 clinical medicine, Information ethics, 0202 electrical engineering, electronic engineering, information engineering, Humans, Medicine, 030212 general & internal medicine, Social Responsibility, business.industry, Data Collection, Health Policy, Corporate governance, General Medicine, Public relations, Digital health, Privacy, Accountability, Public trust, data governance, business, Social responsibility, Switzerland
Abstract

Digital health encompasses a wide range of novel digital technologies related to health and medicine. Such technologies rely on recent advances in the collection and analysis of ever increasing amounts of data from both patients and healthy citizens. Along with new opportunities, however, come new ethical and policy challenges. These range from the need to adapt current evidence-based standards, to issues of privacy, oversight, accountability and public trust as well as national and international data governance and management. This review illustrates key issues and challenges facing the rapidly unfolding digital health paradigm and reflects on the impact of big data in medical research and clinical practice both internationally and in Switzerland. It concludes by emphasising five conditions that will be crucial to fulfil in order to foster innovation and fair benefit sharing in digital health., Swiss Medical Weekly, 148, ISSN:1424-7860, ISSN:1424-3997

Published
2018

18. Operational Definition of Active and Healthy Aging (AHA): The European Innovation Partnership (EIP) on AHA Reference Site Questionnaire: Montpellier October 20-21, 2014, Lisbon July 2, 2015

Author

Karen Ritchie, Daniel Harman, Philippe-Jean Bousquet, Erik Melén, Pierre Senesse, Govert Joan Buijs, Antonio Cano, Claude Jeandel, Timo E. Strandberg, Marieke Van Beurden, Pascal Demoly, G. Moda, Raquel Santiago, Sylvie Arnavielhe, Marie-Eve Joel, Nicola Wilson, Eveline Wouters, Jacques Touchon, Martina O'Neill, Isabelle Momas, Karen Andersen Ranberg, D. Heve, Maddalena Illario, Christina Tischer, Jean Bousquet, Marcel Goldberg, Paola Bertone, Guido Iaccarino, Antoine Avignon, Rodolphe Bourret, Valeria Romano, Laura Calzà, Henriet A. Smit, Mirca Barbolini, David Kula, Jacques-Yves Pelissier, Mario Barbagallo, Bruno Vellas, Ann Scott, C. Robalo-Cordeiro, Gregoire Mercier, Mike Bewick, Bernard Combe, Holger Schulz, Sergio Bonini, P. Viriot-Durandal, Itziar Vergara, M. Nogues, Carol Brayne, João Apóstolo, Jacques Mercier, Vicente Traver-Salcedo, François Puisieux, Julia Coletta, Alessandro Blasimme, Olivier Krys, Niels H. Chavannes, John Farrell, Joël Ankri, Ana Maria Carriazo, Rafaelle Varraso, Marie Zins, Zdenec Gutter, José António Pereira da Silva, Bertrand Fougère, Frédéric Cuisinier, Bolesław Samoliński, Jacques Bringer, Theodore D. Cosco, Jordi Alonso, Ana Todo-Bom, Claudine Berr, Daniel Laune, Esteban De Manuel Keenoy, Judith Garcia-Aymerich, Anna Bedbrook, Anne Hendry, Richard Pengelly, Dagmar Poethig, João O. Malva, Thomas Keil, Sandra N. Slagter, Nick A. Guldemond, Pierre Matignon, Hubert Blain, Leocadio Rodríguez Mañas, Marek L. Kowalski, Susana Fernandez-Nocelo, Alfredo Cesario, Sandra Rebello, Federico Alonso, Catarina R. Oliveira, Dieter Maier, Jean-Pierre Michel, David Somekh, T. Camuzat, Julien Venne, Marc Criton, Jaime Correia de Sousa, Hassan Arshad, Anabella Mota Pinto, Valentina A. Andreeva, François Roubille, Yoav Ben-Shlomo, Asghar Zaidi, Elena Villalba-Mora, Emmanuelle Kesse-Guyot, Dirkje S. Postma, Carel Thijs, Jean-Marie Robine, Danielle Porta, George Crooks, Adrianna Nizinska, Jorge Suanzes, Contre les MAladies Chroniques pour un VIeillissement Actif en Languedoc-Roussillon (MACVIA-LR), Université Montpellier 1 (UM1)-Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre Hospitalier Universitaire de Nîmes (CHU Nîmes)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS)-European Innovation Partnership on Active and Healthy Ageing Reference Site (EIP on AHA), Commission Européenne-Commission Européenne-Organisation Mondiale de la Santé / World Health Organization Office (OMS / WHO), Bone and Joint Research Group, University of Southampton Medical School, CHU Toulouse [Toulouse], Center for Research in Environmental Epidemiology (CREAL), Universitat Pompeu Fabra [Barcelona] (UPF)-Catalunya ministerio de salud, Santé publique et épidémiologie des déterminants professionnels et sociaux de la santé, Epidémiologie, sciences sociales, santé publique (IFR 69), Université Paris 1 Panthéon-Sorbonne (UP1)-Université Paris-Sud - Paris 11 (UP11)-École des hautes études en sciences sociales (EHESS)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Université Paris 1 Panthéon-Sorbonne (UP1)-Université Paris-Sud - Paris 11 (UP11)-École des hautes études en sciences sociales (EHESS)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Versailles Saint-Quentin-en-Yvelines (UVSQ), Department of Social Medicine, University of Bristol [Bristol], Pathologies du système nerveux : recherche épidémiologique et clinique, Université Montpellier 1 (UM1)-IFR76-Institut National de la Santé et de la Recherche Médicale (INSERM), Department of Electrical Engineering, Mathematics and Computer Science [Delft], Delft University of Technology (TU Delft), Unité de Recherche en Epidémiologie Nutritionnelle (UREN), Université Paris 13 (UP13)-Institut National de la Recherche Agronomique (INRA)-Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM), F2ME, PSA Peugeot - Citroën (PSA), PSA Peugeot Citroën (PSA)-PSA Peugeot Citroën (PSA)-Laboratoire Pluridisciplinaire de Recherche en Ingénierie des Systèmes, Mécanique et Energétique (PRISME), Université d'Orléans (UO)-Ecole Nationale Supérieure d'Ingénieurs de Bourges (ENSI Bourges)-Université d'Orléans (UO)-Ecole Nationale Supérieure d'Ingénieurs de Bourges (ENSI Bourges), Department of Epidemiology and Public Health, Imperial College London, CERMES3 - Centre de recherche Médecine, sciences, santé, santé mentale, société (CERMES3 - UMR 8211 / U988 / UM 7), Centre National de la Recherche Scientifique (CNRS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Descartes - Paris 5 (UPD5)-École des hautes études en sciences sociales (EHESS), Département Ecologie, Physiologie et Ethologie (DEPE-IPHC), Institut Pluridisciplinaire Hubert Curien (IPHC), Université Louis Pasteur - Strasbourg I-Centre National de la Recherche Scientifique (CNRS)-Université Louis Pasteur - Strasbourg I-Centre National de la Recherche Scientifique (CNRS), Department of Prevention of Envinronmental Hazards and Allergology, Medical University of Warsaw - Poland, Department of Epidemiology, Maastricht University [Maastricht]-School for Public Health and Primary Care (CAPHRI), Hôpital Gui de Chauliac, Université Montpellier 1 (UM1)-Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Institut National de la Recherche Agronomique (INRA)-Université Paris Diderot - Paris 7 (UPD7)-Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC)-Institut National de la Santé et de la Recherche Médicale (INSERM), Kyomed, Physiologie & médecine expérimentale du Cœur et des Muscles [U 1046] (PhyMedExp), Université de Montpellier (UM)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), Department of Geriatrics - Efficiency and Deficiency Laboratory, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Consiglio Nazionale delle Ricerche (CNR), Centre Hospitalier Universitaire de Montpellier (CHU Montpellier ), Département pneumologie et addictologie [Montpellier], Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Hôpital Arnaud de Villeneuve, Department of Public Health and Primary Care, University of Cambridge [UK] (CAM), Service d'endocrinologie, Departamento de Sistemas Informáticos y Computación [Valencia], Universitat Politècnica de València (UPV), Deputy Scientific Director, Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) San Raffaele Pisana, Département de Rhumatologie[Montpellier], Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Hôpital Lapeyronie, Laboratoire de chimie biomoléculaire (LCB), Université Montpellier 2 - Sciences et Techniques (UM2)-Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-MAYOLI SPINDLER SA-Centre National de la Recherche Scientifique (CNRS), Laboratoire de Bioingénierie et NanoSciences (LBN), Université Montpellier 1 (UM1)-Université de Montpellier (UM), Laboratoire de Gérontechnologie [Hôpital La Grave-CHU de Toulouse], Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-CHU Toulouse [Toulouse]-Institut National de la Santé et de la Recherche Médicale (INSERM)-Gérontopôle, IMIM-Hospital del Mar, Generalitat de Catalunya, Département de Biostatistiques, Agence Régionale de Santé Languedoc Roussillon (ARS), Department of Medicine and Surgery, Università degli Studi di Salerno (UNISA)-RCCS 'Multimedia', Centre de gérontologie clinique, Institute of Social Medicine, Epidemiology and Health Economics-Charité - UniversitätsMedizin = Charité - University Hospital [Berlin], Institut de Recherche en Infectiologie de Montpellier (IRIM), Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), Institute of Environmental Medicine, Karolinska Institutet [Stockholm]-Karolinska University Hospital [Stockholm]-Astrid Lindgren Children's Hospital, Lab-STICC_TB_CID_TOMS, Laboratoire des sciences et techniques de l'information, de la communication et de la connaissance (Lab-STICC), École Nationale d'Ingénieurs de Brest (ENIB)-Université de Bretagne Sud (UBS)-Université de Brest (UBO)-Télécom Bretagne-Institut Brestois du Numérique et des Mathématiques (IBNM), Université de Brest (UBO)-Université européenne de Bretagne - European University of Brittany (UEB)-École Nationale Supérieure de Techniques Avancées Bretagne (ENSTA Bretagne)-Institut Mines-Télécom [Paris] (IMT)-Centre National de la Recherche Scientifique (CNRS)-École Nationale d'Ingénieurs de Brest (ENIB)-Université de Bretagne Sud (UBS)-Université de Brest (UBO)-Télécom Bretagne-Institut Brestois du Numérique et des Mathématiques (IBNM), Université de Brest (UBO)-Université européenne de Bretagne - European University of Brittany (UEB)-École Nationale Supérieure de Techniques Avancées Bretagne (ENSTA Bretagne)-Institut Mines-Télécom [Paris] (IMT)-Centre National de la Recherche Scientifique (CNRS), Epidémiologie Environnementale : Impact Sanitaire des Pollutions (EA 4064), Université Paris Descartes - Paris 5 (UPD5), Universidad Pública de Navarra [Espagne] = Public University of Navarra (UPNA), Unité de Virologie clinique et fondamentale (UVCF), Université de Picardie Jules Verne (UPJV)-CHU Amiens-Picardie, Mécanismes adaptatifs : des organismes aux communautés (MAOAC), Muséum national d'Histoire naturelle (MNHN)-Université Pierre et Marie Curie - Paris 6 (UPMC)-Centre National de la Recherche Scientifique (CNRS), Department of Pulmonary Medicine and Tuberculosis, University of Groningen [Groningen], Service de gériatrie, Centre Hospitalier Régional Universitaire [Lille] (CHRU Lille), Allergy and Clinical Immunology Department, Hospitais da Universidade de Coimbra, Département de nutrition et d'oncologie digestive, CRLCC Val d'Aurelle - Paul Lamarque, Institute of Epidemiology [Neuherberg] (EPI), German Research Center for Environmental Health - Helmholtz Center München (GmbH), Centre de recherche en épidémiologie et santé des populations (CESP), Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Université Paris-Sud - Paris 11 (UP11)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Versailles Saint-Quentin-en-Yvelines (UVSQ), Bousquet, Jean, Malva, Joao, Nogues, Michel, Mañas, Leocadio Rodriguez, Vellas, Bruno, Farrell, J, Bewick, M, Kowalski, Ml, Strandberg, T, Alonso, J, Ranberg, Ka, Ankri, J, Barbagallo, M, Ben Shlomo, Y, Berr, C, Crooks, G, de Manuel Keenoy, E, Goldberg, M, Guldemond, N, Illario, Maddalena, Joel, Me, Kesse Guyot, E, Michel, Jp, Pengelly, R, Ritchie, K, Robine, Jm, Romano, V, Samolinski, B, Schulz, H, Thijs, C, Touchon, J, Zaidi, A, Apostolo, J, Alonso, F, Andreeva, V, Arnavielhe, S, Arshad, H, Avignon, A, Barbolini, M, Bedbrook, A, Bertone, P, Blain, H, Blasimme, A, Bonini, S, Bourret, R, Bousquet, Pj, Brayne, C, Bringer, J, Buijs, Gj, Calza, L, Camuzat, T, Cano, A, Carriazo, A, Cesario, A, Chavannes, N, Combe, B, Coletta, J, de Sousa, Jc, Cosco, T, Criton, M, Cuisinier, F, Demoly, P, Fernandez Nocelo, S, Fougère, B, Garcia Aymerich, J, Gutter, Z, Harman, D, Hendry, A, Hève, D, Iaccarino, G, Jeandel, C, Keil, T, Krys, O, Kula, D, Laune, D, Maier, D, Matignon, P, Melen, E, Mercier, G, Moda, G, Momas, I, Pinto, Am, Nizinska, A, Oliveira, C, O'Neill, M, Pelissier, Jy, Pereira da Silva, Ja, Poethig, D, Porta, D, Postma, D, Puisieux, F, Rebello, S, Robalo Cordeiro, C, Roubille, F, Santiago, R, Scott, A, Senesse, P, Slagter, S, Smit, Ha, Somekh, D, Suanzes, J, Tischer, C, Todo Bom, A, Traver Salcedo, V, Van Beurden, M, Varraso, R, Venne, J, Vergara, I, Villalba Mora, E, Viriot Durandal, P, Wilson, N, Wouters, E, Zins, M, Mercier, J., Université Montpellier 1 (UM1)-Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre Hospitalier Régional Universitaire de Nîmes (CHRU Nîmes)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS)-European Innovation Partnership on Active and Healthy Ageing Reference Site (EIP on AHA), Universitat Pompeu Fabra [Barcelona]-Catalunya ministerio de salud, Université Panthéon-Sorbonne (UP1)-Université Paris-Sud - Paris 11 (UP11)-École des hautes études en sciences sociales (EHESS)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Université Panthéon-Sorbonne (UP1)-Université Paris-Sud - Paris 11 (UP11)-École des hautes études en sciences sociales (EHESS)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Institut National de la Santé et de la Recherche Médicale (INSERM), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Sorbonne Paris Cité (USPC)-Université Paris 13 (UP13)-Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Institut National de la Recherche Agronomique (INRA), Ecole Nationale Supérieure d'Ingénieurs de Bourges (ENSI Bourges)-Université d'Orléans (UO)-Ecole Nationale Supérieure d'Ingénieurs de Bourges (ENSI Bourges)-Université d'Orléans (UO), Université Louis Pasteur - Strasbourg I-Centre National de la Recherche Scientifique (CNRS), Université Paris Diderot - Paris 7 (UPD7)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Institut National de la Recherche Agronomique (INRA)-Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), CHU Montpellier, Universidad Politécnica de Valencia, Centre National de la Recherche Scientifique (CNRS)-MAYOLI SPINDLER SA-Ecole Nationale Supérieure de Chimie de Montpellier (ENSCM)-Université Montpellier 2 - Sciences et Techniques (UM2), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Gérontopôle-Institut National de la Santé et de la Recherche Médicale (INSERM)-CHU Toulouse [Toulouse], University of Salerno (UNISA)-RCCS 'Multimedia', Charité - Universitätsmedizin Berlin / Charite - University Medicine Berlin -Epidemiology and Health Economics, Centre National de la Recherche Scientifique (CNRS)-Université de Montpellier (UM), Universidad Pública de Navarra [Espagne] (UPNA), Unité de Virologie clinique et fondamentale EA 4294, Centre National de la Recherche Scientifique (CNRS)-Collège de France (CdF)-Muséum national d'Histoire naturelle (MNHN), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Université Paris-Sud - Paris 11 (UP11)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Hôpital Paul Brousse-Institut National de la Santé et de la Recherche Médicale (INSERM), Bousquet J, Malva J, Nogues M, Mañas LR, Vellas B, Farrell J, MACVIA Research Group [.., L. Calzà, ], Farrell, John, Bonini, Sergio, Université Panthéon-Sorbonne (UP1)-Université Paris-Sud - Paris 11 (UP11)-École des hautes études en sciences sociales (EHESS)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Université Panthéon-Sorbonne (UP1)-Université Paris-Sud - Paris 11 (UP11)-École des hautes études en sciences sociales (EHESS)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Versailles Saint-Quentin-en-Yvelines (UVSQ), Muséum national d'Histoire naturelle (MNHN)-Collège de France (CdF)-Centre National de la Recherche Scientifique (CNRS), Epidemiologie, RS: CAPHRI School for Public Health and Primary Care, and RS: CAPHRI - R5 - Optimising Patient Care

Subjects
Gerontology, Concept Formation, [SDV]Life Sciences [q-bio], Disability Evaluation, 0302 clinical medicine, SF-12, QUALITY-OF-LIFE, Surveys and Questionnaires, WHODAS 2.0, Medicine, 030212 general & internal medicine, VERSION, POPULATION, PSYCHOLOGICAL DISTRESS, SCALE, General Nursing, Nursing (all)2901 Nursing (miscellaneous), health care economics and organizations, ComputingMilieux_MISCELLANEOUS, Aged, 80 and over, education.field_of_study, Operational definition, Medicine (all), Health Policy, PHYSICAL-ACTIVITY QUESTIONNAIRE, PRIMARY-CARE, General Medicine, 3. Good health, Europe, General partnership, Scale (social sciences), Population, SELF-REPORT, VALIDATION, 03 medical and health sciences, Quality of life (healthcare), EQ-5D, Journal Article, Humans, OLDER-ADULTS, education, Geriatric Assessment, Health policy, Aged, business.industry, questionnaire, Active and healthy ageing, United States, Questionnaire, Quality of Life, The Conceptual Framework, Geriatrics and Gerontology, business, 030217 neurology & neurosurgery, [SDV.MHEP]Life Sciences [q-bio]/Human health and pathology
Abstract

A core operational definition of active and healthy aging (AHA) is needed to conduct comparisons. A conceptual AHA framework proposed by the European Innovation Partnership on Active and Healthy Ageing Reference Site Network includes several items such as functioning (individual capability and underlying body systems), well-being, activities and participation, and diseases (including non-communicable diseases, frailty, mental and oral health disorders). The instruments proposed to assess the conceptual framework of AHA have common applicability and availability attributes. The approach includes core and optional domains/instruments depending on the needs and the questions. A major common domain is function, as measured by the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). WHODAS 2.0 can be used across all diseases and healthy individuals. It covers many of the AHA dimensions proposed by the Reference Site network. However, WHODAS 2.0 does not include all dimensions proposed for AHA assessment. The second common domain is health-related quality of life (HRQoL). A report of the AHA questionnaire in the form of a spider net has been proposed to facilitate usual comparisons across individuals and groups of interest. (C) 2015 Published by Elsevier Inc. on behalf of AMDA - The Society for Post-Acute and Long-Term Care Medicine.

Published
2015

19. Big Data and Dementia: Charting the Route Ahead for Research, Ethics, and Policy

Author

Ienca, Marcello, Vayena, Effy, and Blasimme, Alessandro

Subjects
lcsh:R5-920, education, health policy, dementia, big data, ethics, Alzheimer’s disease, real-world evidence, mild cognitive impairment, m-health, Perspective, Medicine, lcsh:Medicine (General)
Abstract

Emerging trends in pervasive computing and medical informatics are creating the possibility for large-scale collection, sharing, aggregation and analysis of unprecedented volumes of data, a phenomenon commonly known as big data. In this contribution, we review the existing scientific literature on big data approaches to dementia, as well as commercially available mobile-based applications in this domain. Our analysis suggests that big data approaches to dementia research and care hold promise for improving current preventive and predictive models, casting light on the etiology of the disease, enabling earlier diagnosis, optimizing resource allocation, and delivering more tailored treatments to patients with specific disease trajectories. Such promissory outlook, however, has not materialized yet, and raises a number of technical, scientific, ethical, and regulatory challenges. This paper provides an assessment of these challenges and charts the route ahead for research, ethics, and policy., Frontiers in Medicine, 5, ISSN:2296-858X

Published
2017

20. Informed Consent and the Disclosure of Clinical Results to Research Participants

Author

Samia Hurst, Celine Moret, Alessandro Blasimme, and Effy Vayena

Subjects
0301 basic medicine, Medical education, ddc:174.957, Biomedical Research, Informed Consent, Human Rights, Research Subjects, Health Policy, 06 humanities and the arts, Disclosure, 030105 genetics & heredity, 0603 philosophy, ethics and religion, Access to Information, 03 medical and health sciences, Issues, ethics and legal aspects, Informed consent, Evidence-Based Practice, Common Rule, Humans, 060301 applied ethics, Psychology, Ethics Committees, Research
Abstract

The American Journal of Bioethics, 17 (7), ISSN:1526-5161, ISSN:1536-0075

Published
2017

21. Reprogramming potentiality: the co-production of stem cell policy and democracy

Author

Giuseppe Testa, Alessandro Blasimme, Bettina Schmietow, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, University of Milan, European Institute of Oncology [Milan] (ESMO), Blasimme, Alessandro, Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), and Università degli Studi di Milano = University of Milan (UNIMI)

Subjects
media_common.quotation_subject, MESH: Induced Pluripotent Stem Cells, 0603 philosophy, ethics and religion, 03 medical and health sciences, Political science, Production (economics), MESH: Embryo Research, MESH: Animals, ComputingMilieux_MISCELLANEOUS, 030304 developmental biology, media_common, 0303 health sciences, MESH: Humans, MESH: Beginning of Human Life, business.industry, Health Policy, MESH: Embryo, Mammalian, 06 humanities and the arts, [SDV.ETH] Life Sciences [q-bio]/Ethics, MESH: Personhood, Democracy, Biotechnology, [SDV.ETH]Life Sciences [q-bio]/Ethics, Issues, ethics and legal aspects, MESH: Moral Obligations, 060302 philosophy, Stem cell, business, Reprogramming
Abstract

International audience

Published
2013

22. Genomic incidental findings: reducing the burden to be fair

Author

Anne Cambon-Thomsen, Alessandro Blasimme, Velizara Anastasova, Sophie Julia, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), and Blasimme, Alessandro

Subjects
0303 health sciences, Health Policy, Genomic research, 030305 genetics & heredity, Conflict of interest, Environmental ethics, 06 humanities and the arts, Bioethics, [SDV.ETH] Life Sciences [q-bio]/Ethics, 0603 philosophy, ethics and religion, [SDV.ETH]Life Sciences [q-bio]/Ethics, 03 medical and health sciences, Issues, ethics and legal aspects, Political science, [SDV.BBM.GTP]Life Sciences [q-bio]/Biochemistry, Molecular Biology/Genomics [q-bio.GN], [SDV.BBM.GTP] Life Sciences [q-bio]/Biochemistry, Molecular Biology/Genomics [q-bio.GN], 060301 applied ethics, Social responsibility, ComputingMilieux_MISCELLANEOUS
Abstract

The disclosure of incidental findings to genomic research participants is a hotly debated issue in bioethics. Gliwa and Berkman (2013) added a provocative twist to this debate by arguing that, prov...

Published
2013

23. From Evidence to Action: Promoting a Multidimensional Approach to Mild Cognitive Impairment

Author

Nicola Vanacore, Alessandro Blasimme, Giuseppe Bruno, Matteo Cesari, Marco Canevelli, and University of Zurich

Subjects
Evidence-Based Medicine, business.industry, Health Policy, 610 Medicine & health, 2717 Geriatrics and Gerontology, General Medicine, 10060 Epidemiology, Biostatistics and Prevention Institute (EBPI), medicine (all), nursing (all) 2901 nursing (miscellaneous), health policy, 2719 Health Policy, Text mining, Action (philosophy), Risk Factors, Medicine, Humans, Cognitive Dysfunction, Geriatrics and Gerontology, business, Cognitive impairment, 2900 General Nursing, General Nursing, Cognitive psychology
Published
2015

24. Issues about the use of subjective cognitive decline in Alzheimer's disease research

Author

Giuseppe Bruno, Marco Canevelli, Alessandro Blasimme, Matteo Cesari, and Nicola Vanacore

Subjects
Alzheimer's disease research, Gerontology, Psychiatry and Mental health, Cellular and Molecular Neuroscience, Developmental Neuroscience, Epidemiology, business.industry, Health Policy, Medicine, Neurology (clinical), Geriatrics and Gerontology, Cognitive decline, business
Published
2014

25. Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine

Author

Effy Vayena, Alessandro Blasimme, University of Zurich, Blasimme, Alessandro, Health Ethics and Policy Lab [Zurich, Suisse], Universität Zürich [Zürich] = University of Zurich (UZH), Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), The work of AB has been partially supported by EUCelLEX EU-FP7 Program, Grant Agreement No. 601806., Bodescot, Myriam, Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), and Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées

Subjects
Value (ethics), Health (social science), Biomedical Research, Databases, Factual, Social Values, Debate, Medical Records, 0302 clinical medicine, 030212 general & internal medicine, Sociology, Bioethical Issues, Autonomy, media_common, Biological Specimen Banks, Social Responsibility, Health Policy, Precision medicine, Participation, 06 humanities and the arts, 3. Good health, 2910 Issues, Ethics and Legal Aspects, Pluralism (political theory), Public participation, [SCCO.PSYC]Cognitive science/Psychology, [SCCO.PSYC] Cognitive science/Psychology, Engineering ethics, Ethical Theory, 3306 Health (social science), Social psychology, Attitude to Health, media_common.quotation_subject, 610 Medicine & health, 0603 philosophy, ethics and religion, Morals, Ethics, Research, Health(social science), 03 medical and health sciences, Humans, Justice (ethics), Ethics, Community Participation, Bioethics, 10060 Epidemiology, Biostatistics and Prevention Institute (EBPI), [SDV.ETH] Life Sciences [q-bio]/Ethics, Personalized medicine, 2719 Health Policy, [SDV.ETH]Life Sciences [q-bio]/Ethics, Philosophy, Issues, ethics and legal aspects, Philosophy of medicine, [SDV.SPEE] Life Sciences [q-bio]/Santé publique et épidémiologie, Personal Autonomy, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, 060301 applied ethics, Patient Participation
Abstract

Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants’ attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to broaden the focus of discussion beyond individual choice and individuals’ moral interests. The uptake of those concepts in precision medicine is to be welcomed. However, as data and medical information from research participants in precision medicine cohorts will be collected on an individual basis, translating a participatory approach in this emerging area may prove cumbersome. Therefore, drawing on Joseph Raz’s perfectionism, we propose a principle of respect for autonomous agents that, we reckon, can address many of the concerns driving recent scholarship on partnership and public participation, while avoiding some of the limitations these concept have in the context of precision medicine. Our approach offers a normative clarification to how becoming partners in precision is compatible with retaining autonomy.Realigning the value of autonomy with ideals of direct engagement, we show, can provide adequate normative orientation to precision medicine; it can do justice to the idea of moral pluralism by stressing the value of moral self-determination: and, finally, it can reconcile the notion of autonomy with other more communitarian values such as participation and solidarity.

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