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446 results on '"Blasimme A"'

151. Cancer Biomarkers: Ethics, Economics and Society

Author

Blanchard, Anne, Strand, Roger, Cairns, John Alexander, Tranvåg, Eirik Joakim, Norheim, Ole Frithjof, Seo, Mikyung Kelly, Wik, Elisabeth, Engen, Caroline Benedicte Nitter, Blasimme, Alessandro, and Fleck, Leonard M.

Abstract

publishedVersion

Published
2017

152. Open sharing of genomic data: Who does it and why?

Author

Effy Vayena, Alessandro Blasimme, Tobias Haeusermann, Darja Irdam, Bastian Greshake, Martin Richards, Wang, Kai, Haeusermann, Tobias [0000-0002-5880-7873], and Apollo - University of Cambridge Repository

Subjects
0301 basic medicine, Male, Distribution (economics), lcsh:Medicine, Social Sciences, 030105 genetics & heredity, Bioinformatics, Database and Informatics Methods, Families, Sociology, Information system, Medicine and Health Sciences, lcsh:Science, Children, media_common, Multidisciplinary, Schools, Conceptualization, medicine.diagnostic_test, Genomics, Medical research, Genomic Databases, Open data, Female, Research Article, media_common.quotation_subject, Internet privacy, Research and Analysis Methods, Education, 03 medical and health sciences, Genomic Medicine, ddc:570, Direct-To-Consumer Screening and Testing, medicine, Genetics, Humans, Genetic Testing, Genetic testing, Clinical Genetics, Information Services, business.industry, lcsh:R, Biology and Life Sciences, Computational Biology, Human Genetics, Genome Analysis, Data sharing, 030104 developmental biology, Biological Databases, Age Groups, People and Places, lcsh:Q, Population Groupings, business, Diversity (politics)
Abstract

We explored the characteristics and motivations of people who, having obtained their genetic or genomic data from Direct-To-Consumer genetic testing (DTC-GT) companies, voluntarily decide to share them on the publicly accessible web platform openSNP. The study is the first attempt to describe open data sharing activities undertaken by individuals without institutional oversight. In the paper we provide a detailed overview of the distribution of the demographic characteristics and motivations of people engaged in genetic or genomic open data sharing. The geographical distribution of the respondents showed the USA as dominant. There was no significant gender divide, the age distribution was broad, educational background varied and respondents with and without children were equally represented. Health, even though prominent, was not the respondents' primary or only motivation to be tested. As to their motivations to openly share their data, 86.05% indicated wanting to learn about themselves as relevant, followed by contributing to the advancement of medical research (80.30%), improving the predictability of genetic testing (76.02%) and considering it fun to explore genotype and phenotype data (75.51%). Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible. Our findings highlight the diversity of DTC-GT consumers who decide to openly share their data. Instead of focusing exclusively on health-related aspects of genetic testing and data sharing, our study emphasizes the importance of taking into account benefits and risks that stretch beyond the health spectrum. Our results thus lend further support to the call for a broader and multi-faceted conceptualization of genomic utility., PLoS ONE, 12 (5), ISSN:1932-6203

Published
2017
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153. Societal and global implications of the 'dementia epidemic': the example of the London Heathrow airport

Author

Marco Canevelli, Alessandro Blasimme, and Matteo Cesari

Subjects
Gerontology, medicine.medical_specialty, Airports, Epidemiology, MEDLINE, Global Health, 03 medical and health sciences, 0302 clinical medicine, Alzheimer Disease, London, medicine, Global health, Healthcare inequalities, Dementia, Humans, 030212 general & internal medicine, business.industry, Public health, medicine.disease, Alzheimer’s disease, Public Health, Alzheimer's disease, business, 030217 neurology & neurosurgery
Published
2016

154. Regulation of Cell-Based Therapies in Europe: Current Challenges and Emerging Issues

Author

Alessandro Blasimme and Emmanuelle Rial-Sebbag

Subjects
0303 health sciences, Stem Cells, Cell- and Tissue-Based Therapy, Cell Biology, Hematology, 030204 cardiovascular system & hematology, Biology, Regenerative Medicine, 3. Good health, 03 medical and health sciences, 0302 clinical medicine, Italy, Regional Initiatives, Capital (economics), Humans, Engineering ethics, 030304 developmental biology, Developmental Biology, Cell based, Pace
Abstract

Europe is ready to deploy its immense capital of knowledge into the development of effective cell-based therapies and delve into the global race for translating stem cell science into regenerative medicine. But what are the challenges and the emerging issues that lay ahead the realization of Europe's enormous potential in this field? Both researchers and industrial stakeholders tend to impute the slow pace of translation to specific suboptimal features of the regulatory environment in Europe. At the same time, a host of new issues are emerging as testified by a recent public controversy regarding the provision of unproven cell therapy in Italy. We will review this topic and suggest some solutions to foster the responsible development of innovative cell-based therapies in Europe.

Published
2013

155. Operative definition of active and healthy ageing (AHA): Meeting report. Montpellier October 20–21, 2014

Author

Carol Brayne, O. Krys, B. Samolinski, Ana Maria Carriazo, François Roubille, Joël Ankri, P. Matignon, P. Bertone, V. Traver-Salcedo, D. Poethig, Sergio Bonini, Itziar Vergara, P. Viriot-Durandal, J. Suanzes, François Puisieux, Elena Villalba-Mora, D. Kula, A. Bedbrook, Vittorio Romano, J. Touchon, Daniel Laune, J. Pelissier, L. Rodriguez Manas, G. J. Buijs, M. Criton, Marek L. Kowalski, T. Strandberg, Mai Stafford, M. Van Beurden, S. Slagter, Erik Melén, Marcus Richards, Mike Bewick, Carel Thijs, Raphaëlle Varraso, Alessandro Blasimme, A. Zaidi, Gregoire Mercier, Henriette A. Smit, S. Fernandez-Nocelo, K. Andersen Ranberg, Frédéric Cuisinier, Bruno Vellas, M. O'Neill, Claudine Berr, João O. Malva, Thomas Keil, Holger Schulz, Theodore D. Cosco, H. Blain, C. Tischer, Pierre Senesse, Emmanuelle Kesse-Guyot, Philippe-Jean Bousquet, Dirkje S. Postma, Susanne Krauss-Etschmann, Daniela Porta, Pascal Demoly, Z. Gutter, M. E. Joel, G. Moda, Claude Jeandel, I. Momas, John Farrell, Karen Ritchie, Sylvie Arnavielhe, Eveline Wouters, J. Coletta, Nick A. Guldemond, J. Bringer, Justin Michel, D. Heve, J. Garcia-Aymerich, Jordi Alonso, Jean Bousquet, Ana Todo-Bom, Dieter Maier, Jean-Marie Robine, Rachel Cooper, Diana Kuh, Guido Iaccarino, Antoine Avignon, J. Mercier, A. Hendry, Davide Caimmi, Bernard Combe, Neil Wilson, R. Pengelly, C. Robalo-Cordeiro, P. Auge, J. Venne, Rebecca Hardy, Maddalena Illario, A. Nizinkska, Alfredo Cesario, Marcel Goldberg, Sylvain Lehmann, Bertrand Fougère, Syed Hasan Arshad, A. Scott, Federico Alonso, M. Nogues, Marie Zins, Rodolphe Bourret, David Somekh, T. Camuzat, D. Harman, Valentina A. Andreeva, Physiologie & médecine expérimentale du Cœur et des Muscles [U 1046] (PhyMedExp), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), Biocommunication en Cardio-Métabolique (BC2M), Université de Montpellier (UM), 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), Department of Prevention of Environmental Hazards and Allergology, Medical University of Warsaw - Poland-Faculté de Pharmacie de Paris, Institute of Neurobiology and Molecular Medicine, CNR, Rome, Italy and Department of Medicine-University of Naples Federico II = Università degli studi di Napoli Federico II, Institut d'Electronique du Solide et des Systèmes (InESS), Université Louis Pasteur - Strasbourg I-Centre National de la Recherche Scientifique (CNRS), Departamento de Biología Molecular y Celular del Cáncer (CSIC-UAM), Instituto de Investigaciones Biomédicas A. Sols, Hôpital Lapeyronie [Montpellier] (CHU), Equipe 3: EREN- Equipe de Recherche en Epidémiologie Nutritionnelle (CRESS - U1153), Université Paris 13 (UP13)-Institut National de la Recherche Agronomique (INRA)-Conservatoire National des Arts et Métiers [CNAM] (CNAM), HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-HESAM Université - Communauté d'universités et d'établissements Hautes écoles Sorbonne Arts et métiers université (HESAM)-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)-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), CERMES3 - Centre de recherche Médecine, sciences, santé, santé mentale, société (CERMES3 - UMR 8211 / U988 / UM 7), École des hautes études en sciences sociales (EHESS)-Université Paris Descartes - Paris 5 (UPD5)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS), Gérontopôle, Epidémiologie et analyses en santé publique : risques, maladies chroniques et handicaps (LEASP), Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), Université Paris-Est Marne-la-Vallée (UPEM), Eindhoven University of Technology [Eindhoven] (TU/e), Département pneumologie et addictologie [Montpellier], Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Hôpital Arnaud de Villeneuve, IMIM-Hospital del Mar, Generalitat de Catalunya, Groupe Matrice Extracellulaire et Biomineralisation, Université Paris Descartes - Paris 5 (UPD5), GEOMAR LEGOS, Laboratoire d'études en Géophysique et océanographie spatiales (LEGOS), Institut de Recherche pour le Développement (IRD)-Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut national des sciences de l'Univers (INSU - CNRS)-Observatoire Midi-Pyrénées (OMP), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Institut de Recherche pour le Développement (IRD)-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Institut de Recherche pour le Développement (IRD)-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Centre National de la Recherche Scientifique (CNRS), Institut de Recherche en Infectiologie de Montpellier (IRIM), Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), Institut de génétique humaine (IGH), Astrophysique Interprétation Modélisation (AIM (UMR7158 / UMR_E_9005 / UM_112)), Commissariat à l'énergie atomique et aux énergies alternatives (CEA)-Institut national des sciences de l'Univers (INSU - CNRS)-Université Paris Diderot - Paris 7 (UPD7)-Centre National de la Recherche Scientifique (CNRS), Telecom Bretagne, Brest, Laboratoire de magnétisme et d'optique de Versailles (LMOV), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Centre National de la Recherche Scientifique (CNRS), Julius Center for Health Sciences and Primary Care, University Medical Center [Utrecht], Neuropsychiatrie : recherche épidémiologique et clinique (PSNREC), Université Montpellier 1 (UM1)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), Service de Pneumologie, Université Paris-Sud - Paris 11 (UP11)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-AP-HP - Hôpital Antoine Béclère [Clamart], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Cohortes épidémiologiques en population (CONSTANCES), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay-Université Paris Cité (UPCité), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-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-Institut National de la Santé et de la Recherche Médicale (INSERM)-CHU Toulouse [Toulouse], Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut national des sciences de l'Univers (INSU - CNRS)-Observatoire Midi-Pyrénées (OMP), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Institut de Recherche pour le Développement (IRD)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Institut de Recherche pour le Développement (IRD)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Centre National de la Recherche Scientifique (CNRS), Astrophysique Interprétation Modélisation (AIM (UMR_7158 / UMR_E_9005 / UM_112)), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Université Montpellier 1 (UM1)-Centre Hospitalier Universitaire de Nîmes (CHU Nîmes)-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)-Centre National de la Recherche Scientifique (CNRS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), CNR, Rome, Italy and Department of Medicine-University of Naples Federico II, Université Paris 13 (UP13)-Institut National de la Recherche Agronomique (INRA)-Conservatoire National des Arts et Métiers [CNAM] (CNAM)-Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Météo France-Centre National d'Études Spatiales [Toulouse] (CNES)-Université Fédérale Toulouse Midi-Pyrénées-Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Météo France-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Université Toulouse III - Paul Sabatier (UT3), Météo France-Centre National d'Études Spatiales [Toulouse] (CNES)-Université Fédérale Toulouse Midi-Pyrénées-Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Météo France-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Centre National de la Recherche Scientifique (CNRS), Centre National de la Recherche Scientifique (CNRS)-Institut national des sciences de l'Univers (INSU - CNRS)-Commissariat à l'énergie atomique et aux énergies alternatives (CEA)-Université Paris Diderot - Paris 7 (UPD7), Université Montpellier 1 (UM1)-Université de Montpellier (UM)-Institut National de la Santé et de la Recherche Médicale (INSERM), Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris-Saclay-Université de Paris (UP), 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), University of Naples Federico II-CNR, Rome, Italy and Department of Medicine, 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 Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Centre National d'Études Spatiales [Toulouse] (CNES)-Observatoire Midi-Pyrénées (OMP), Université Fédérale Toulouse Midi-Pyrénées-Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Centre National de la Recherche Scientifique (CNRS), Departement de Cardiologie, Neuropsychiatrie : recherche épidémiologique et clinique, Université Paris-Sud - Paris 11 (UP11)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Hôpital Antoine Béclère, UMS011 Cohortes épidémiologiques en population (CONSTANCES), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Versailles Saint-Quentin-en-Yvelines (UVSQ), HESAM Université (HESAM)-HESAM Université (HESAM)-Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité (CRESS (U1153 / UMR_A_1125 / UMR_S_1153)), Institut de Recherche pour le Développement (IRD)-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Université Fédérale Toulouse Midi-Pyrénées-Météo-France -Institut de Recherche pour le Développement (IRD)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -Centre National de la Recherche Scientifique (CNRS)-Institut de Recherche pour le Développement (IRD)-Université Toulouse III - Paul Sabatier (UT3), Institut de Recherche pour le Développement (IRD)-Institut national des sciences de l'Univers (INSU - CNRS)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Université Fédérale Toulouse Midi-Pyrénées-Météo-France -Institut de Recherche pour le Développement (IRD)-Centre National d'Études Spatiales [Toulouse] (CNES)-Centre National de la Recherche Scientifique (CNRS)-Météo-France -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)-Université Paris-Saclay-Université Paris Cité (UPC), Epidemiologie, RS: CAPHRI School for Public Health and Primary Care, RS: CAPHRI - R5 - Optimising Patient Care, Physiologie & médecine expérimentale du Cœur et des Muscles [U 1046] ( PhyMedExp ), Institut National de la Santé et de la Recherche Médicale ( INSERM ) -Université de Montpellier ( UM ) -Centre National de la Recherche Scientifique ( CNRS ), Centre de pharmacologie et innovation dans le diabète ( CPID ), Université Montpellier 1 ( UM1 ) -Centre Hospitalier Régional Universitaire [Montpellier] ( CHRU Montpellier ) -Centre National de la Recherche Scientifique ( CNRS ), Contre les MAladies Chroniques pour un VIeillissement Actif en Languedoc-Roussillon ( MACVIA-LR ), Université Montpellier 1 ( UM1 ) -World Health Organization ( WHO/OMS ) -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, Medical University of Warsaw-Faculté de Pharmacie de Paris, CNR, Rome, Italy and Department of Medicine-Second University of Naples, Institut d'Electronique du Solide et des Systèmes ( InESS ), Université Louis Pasteur - Strasbourg I-Centre National de la Recherche Scientifique ( CNRS ), Departamento de Biología Molecular y Celular del Cáncer ( CSIC-UAM ), Hôpital Lapeyronie [Montpellier] ( CHU ), Equipe 3: EREN- Equipe de Recherche en Epidémiologie Nutritionnelle ( CRESS - U1153 ), Université Paris 13 ( UP13 ) -Institut National de la Recherche Agronomique ( INRA ) -Conservatoire National des Arts et Métiers [CNAM] ( CNAM ) -Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité ( CRESS (U1153 / UMR_A 1125) ), Université Sorbonne Paris Cité ( USPC ) -Institut National de la Santé et de la Recherche Médicale ( INSERM ) -Institut National de la Recherche Agronomique ( INRA ) -Université Sorbonne Paris Cité ( USPC ) -Institut National de la Santé et de la Recherche Médicale ( INSERM ) -Institut National de la Recherche Agronomique ( INRA ), Gerontopole of Toulouse, CHU- Université de Toulouse, Université Paris-Est Marne-la-Vallée ( UPEM ), Centre Hospitalier Régional Universitaire [Montpellier] ( CHRU Montpellier ), Eindhoven University of Technology [Eindhoven] ( TU/e ), Centre Hospitalier Régional Universitaire [Montpellier] ( CHRU Montpellier ) -Hôpital Arnaud de Villeneuve, Université Paris Descartes - Paris 5 ( UPD5 ), Laboratoire d'études en Géophysique et océanographie spatiales ( LEGOS ), Université Paul Sabatier - Toulouse 3 ( UPS ) -Centre National d'Etudes Spatiales ( CNES ) -Institut national des sciences de l'Univers ( INSU - CNRS ) -Observatoire Midi-Pyrénées ( OMP ) -Centre National de la Recherche Scientifique ( CNRS ) -Université Paul Sabatier - Toulouse 3 ( UPS ) -Centre National d'Etudes Spatiales ( CNES ) -Institut national des sciences de l'Univers ( INSU - CNRS ) -Observatoire Midi-Pyrénées ( OMP ) -Centre National de la Recherche Scientifique ( CNRS ), Institut de Recherche en Infectiologie de Montpellier ( IRIM ), Centre National de la Recherche Scientifique ( CNRS ) -Université de Montpellier ( UM ), Institut de génétique humaine ( IGH ), Université de Montpellier ( UM ) -Centre National de la Recherche Scientifique ( CNRS ), Laboratoire AIM, Université Paris Diderot - Paris 7 ( UPD7 ) -Centre d'Etudes de Saclay, Laboratoire de magnétisme et d'optique de Versailles ( LMOV ), Université de Versailles Saint-Quentin-en-Yvelines ( UVSQ ) -Centre National de la Recherche Scientifique ( CNRS ), Cognition, Action, et Plasticité Sensorimotrice [Dijon - U1093] ( CAPS ), Université de Bourgogne ( UB ) -Institut National de la Santé et de la Recherche Médicale ( INSERM ), Space Science Division, Institut National de la Santé et de la Recherche Médicale ( INSERM ) -Université Montpellier 1 ( UM1 ) -Université de Montpellier ( UM ), Université Paris-Sud - Paris 11 ( UP11 ) -Assistance publique - Hôpitaux de Paris (AP-HP)-Hôpital Antoine Béclère, UMS11 Cohortes en population, Institut National de la Santé et de la Recherche Médicale ( INSERM ), Groningen Research Institute for Asthma and COPD (GRIAC), Bousquet, J., Kuh, D., Bewick, M., Strandberg, T., Farrell, J., Pengelly, R., Joel, M. E., Rodriguez Manas, L., Mercier, J., Bringer, J., Camuzat, T., Bourret, R., Bedbrook, A., Kowalski, M. L., Samolinski, B., Bonini, S., Brayne, C., Michel, J. P., Venne, J., Viriot-Durandal, P., Alonso, J., Avignon, A., Bousquet, P. J., Combe, B., Cooper, R., Hardy, R., Iaccarino, G., Keil, T., Kesse-Guyot, E., Momas, I., Ritchie, K., Robine, J. M., Thijs, C., Tischer, C., Vellas, B., Zaidi, A., Alonso, F., Andersen Ranberg, K., Andreeva, V., Ankri, J., Arnavielhe, S., Arshad, S. H., Auge, P., Berr, C., Bertone, P., Blain, H., Blasimme, A., Buijs, G. J., Caimmi, D., Carriazo, A., Cesario, A., Coletta, J., Cosco, T., Criton, M., Cuisinier, F., Demoly, P., Fernandez-Nocelo, S., Fougere, B., Garcia-Aymerich, J., Goldberg, M., Guldemond, N., Gutter, Z., Harman, D., Hendry, A., Heve, D., Illario, M., Jeandel, C., Krauss-Etschmann, S., Krys, O., Kula, D., Laune, D., Lehmann, S., Maier, D., Malva, J., Matignon, P., Melen, E., Mercier, G., Moda, G., Nizinkska, A., Nogues, M., Ogneill, M., Pelissier, J. Y., Poethig, D., Porta, D., Postma, D., Puisieux, F., Richards, M., Robalo-Cordeiro, C., Romano, V., Roubille, F., Schulz, H., Scott, A., Senesse, P., Slagter, S., Smit, H. A., Somekh, D., Stafford, M., Suanzes, J., Todo-Bom, A., Touchon, J., Traver-Salcedo, V., Van Beurden, M., Varraso, R., Vergara, I., Villalba-Mora, E., Wilson, N., Wouters, E., and Zins, M.

Subjects
Gerontology, LANGUEDOC-ROUSSILLON, Reference site, EUROPEAN INNOVATION PARTNERSHIP, [SDV]Life Sciences [q-bio], Population, and Healthy Ageing, 03 medical and health sciences, MACVIA-LR, active and healthy ageing, 0302 clinical medicine, Quality of life (healthcare), Medicine, media_common.cataloged_instance, definition, 030212 general & internal medicine, European union, education, ComputingMilieux_MISCELLANEOUS, media_common, education.field_of_study, [ SDV ] Life Sciences [q-bio], Operational definition, business.industry, MACVIA LR, EIP, european innovation partnership on active and healthy ageing, Noncommunicable disease, General partnership, Healthy ageing, Geriatrics and Gerontology, business, Active and Healthy Ageing, Definition, European Innovation Partnership on Active, 030217 neurology & neurosurgery
Abstract

International audience; The broad concept of Active and Healthy Ageing was proposed by WHO as the process of optimizing opportunities for health to enhance quality of life as people age. It applies to both individuals and population groups. A universal active and healthy ageing definition is not available and may differ depending on the purpose of the definition and/or the questions raised. The European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) has had a major impact but a definition of Active and Healthy Ageing is urgently needed. A meeting was organised in Montpellier October 20-21, 2014 as the annual conference of the EIP on AHA Reference Site MACVIA-LR (contre les MAladies Chroniques pour un VIeillissement Actif en Languedoc Roussillon). The goal of the meeting was to propose an operational definition of Active and Healthy Ageing as well as tools that may be used for this definition. The current paper provides a summary of the plenary presentations that were given during the meeting.

Published
2015

156. Why Include the Public in Genome Editing Governance Deliberation?

Author

Blasimme, Alessandro

Subjects
*GENETIC engineering laws, *CONTROL (Psychology), *DEBATE, *GENETIC engineering, *NURSING models, *PUBLIC opinion, *TWINS, *DECISION making in clinical medicine, *STAKEHOLDER analysis
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. [ABSTRACT FROM AUTHOR]

Published
2019
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157. Ethics, Values, and Responsibility in Human Genome Editing.

Author

McConnell, Sean C. and Blasimme, Alessandro

Subjects
*GENETIC engineering laws, *DIGNITY, *GENETIC engineering, *HIV infections, *HUMAN rights, *NATURAL immunity, *PREIMPLANTATION genetic diagnosis, *RESPONSIBILITY, *SERIAL publications, *CRISPRS
Abstract

In this article, the author reports Ethics, Values, and Responsibility in Human Genome Editing. Topics include CRISPR/Cas9 genome editing, an inexpensive and efficient tool to introduce changes in Deoxyribonucleic acid(DNA); include correcting congenital monogenic disorders, targeting disease-causing molecular lesions, and altering multiple genetic loci at the same time; and used to enhance human traits,3 such as resistance to infectious diseases, strength, or cognitive capacity.

Published
2019
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165. Translating stem cells to the clinic: scientific societies and the making of regenerative medecine

Author

Alessandro Blasimme

Subjects
Political science, General Medicine, Humanities
Abstract

Dans cet article, l’auteur presentera deux corpus de lignes directrices professionnelles etablies par deux societes savantes œuvrant dans le domaine de la medecine regenerative utilisant des cellules souches : la « Societe internationale pour la recherche sur les cellules souches » (ISSCR) et la « Societe internationale de medecine cellulaire » (ICMS). Ces lignes directrices presentent des points de vue divergents sur la facon dont les cellules souches devraient etre utilisees en therapie pour les patients. Elles demontrent l’existence de postures alternatives pour l’encadrement de l’utilisation clinique de ces cellules en s’appuyant sur des hypotheses ontologiques, epistemologiques, ethiques et reglementaires differentes. Ces deux interpretations radicalement opposees sur la facon dont les cellules souches devraient etre transposees pour des applications cliniques, s’ancrent respectivement sur des postures narratives soit de normalisation soit de naturalisation. Ces dernieres sont envisagees comme des ressources pragmatiques- discursives permettant d’articuler le present et l’avenir de la medecine regenerative. S’interesser aux differentes voies de normalisation de la medecine regenerative constitue une veritable opportunite pour une comprehension approfondie de la constitution meme des options du passage a l’utilisation clinique des cellules souches. En effet, dans le futur, la medecine regenerative va continuer a evoluer puisque de nouvelles connaissances scientifiques s’accumuleront et de nouvelles pratiques cliniques seront experimentees. On peut meme soutenir que la controverse sera plus importante dans la mesure ou les acteurs essaient de construire la cohesion professionnelle et de nourrir la confiance du public dans leurs activites scientifiques. En consequence, suivre la trajectoire de ces modeles translationnels tels qu’ils sont proposes, contestes, rejetes ou soutenus par les acteurs scientifiques et les autorites reglementaires sera fondamental pour permettre une evaluation critique des regimes d’encadrement qui stabiliseront ce domaine emergent de l’innovation scientifique.

Published
2013

166. Open sharing of genomic data : who does it and why?

Author

Wang, Kai, Häusermann, Tobias, Tzovaras, Bastian Greshake, Blasimme, Alessandro, Irdam, Darja, Richards, Martin, Vayena, Effy, Wang, Kai, Häusermann, Tobias, Tzovaras, Bastian Greshake, Blasimme, Alessandro, Irdam, Darja, Richards, Martin, and Vayena, Effy

Abstract

We explored the characteristics and motivations of people who, having obtained their genetic or genomic data from Direct-To-Consumer genetic testing (DTC-GT) companies, voluntarily decide to share them on the publicly accessible web platform openSNP. The study is the first attempt to describe open data sharing activities undertaken by individuals without institutional oversight. In the paper we provide a detailed overview of the distribution of the demographic characteristics and motivations of people engaged in genetic or genomic open data sharing. The geographical distribution of the respondents showed the USA as dominant. There was no significant gender divide, the age distribution was broad, educational background varied and respondents with and without children were equally represented. Health, even though prominent, was not the respondents’ primary or only motivation to be tested. As to their motivations to openly share their data, 86.05% indicated wanting to learn about themselves as relevant, followed by contributing to the advancement of medical research (80.30%), improving the predictability of genetic testing (76.02%) and considering it fun to explore genotype and phenotype data (75.51%). Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible. Our findings highlight the diversity of DTC-GT consumers who decide to openly share their data. Instead of focusing exclusively on health-related aspects of genetic testing and data sharing, our study emphasizes the importance of taking into account benefits and risks that stretch beyond the health spectrum. Our results thus lend further support to the call for a broader and multi-faceted conceptualization of genomic utility.

Published
2017

167. 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

Bewick, Mike, Kowalski, Marek L., Strandberg, Timo, Alonso, Jordi, Ranberg, Karen Andersen, Ankri, Joël, Barbagallo, Mario, Ben-Shlomo, Yoav, Berr, Claudine, Crooks, George, de Manuel Keenoy, Esteban, Goldberg, Marcel, Guldemond, Nick, Illario, Maddalena, Joel, Marie-Eve, Kesse-Guyot, Emmanuelle, Michel, Jean-Pierre, Pengelly, Richard, Ritchie, Karen, Robine, Jean-Marie, Romano, Valeria, Samolinski, Boleslaw, Schulz, Holger, Thijs, Carel, Touchon, Jacques, Zaidi, Asghar, Apostolo, Joao, Alonso, Federico, Andreeva, Valentina, Arnavielhe, Sylvie, Arshad, Hassan, Avignon, Antoine, Barbolini, Mirca, Bedbrook, Anna, Bertone, Paola, Blain, Hubert, Blasimme, Alessandro, Bonini, Sergio, Bourret, Rodolphe, Bousquet, Philippe-Jean, Brayne, Carol, Bringer, Jacques, Buijs, Govert Joan, Calza, Laura, Camuzat, Thierry, Cano, Antonio, Carriazo, Ana, Cesario, Alfredo, Chavannes, Niels, Combe, Bernard, Coletta, Julia, de Sousa, Jaime Correia, Cosco, Theodore, Criton, Marc, Cuisinier, Frédéric, Demoly, Pascal, Fernandez-Nocelo, Susana, Fougère, Bertrand, Garcia-Aymerich, Judith, Gutter, Zdenec, Harman, Daniel, Hendry, Anne, Hève, Didier, Iaccarino, Guido, Jeandel, Claude, Keil, Thomas, Krys, Olivier, Kula, David, Laune, Daniel, Maier, Dieter, Matignon, Pierre, Melen, Erik, Mercier, Grégoire, Moda, Giuliana, Momas, Isabelle, Pinto, Anabella Mota, Nizinska, Adrianna, Oliveira, Catarina, O'Neill, Martina, Pelissier, Jacques-Yves, Pereira da Silva, Jose Antonio, Poethig, Dagmar, Porta, Danielle, Postma, Dirkje, Puisieux, François, Rebello, Sandra, Robalo-Cordeiro, Carlos, Roubille, François, Santiago, Raquel, Scott, Ann, Senesse, Pierre, Slagter, Sandra, Smit, Henriet A., Somekh, David, Suanzes, Jorge, Tischer, Christina, Todo-Bom, Ana, Traver-Salcedo, Vicente, Van Beurden, Marieke, Varraso, Rafaelle, Venne, Julien, Vergara, Itziar, Villalba-Mora, E., Viriot-Durandal, P., Wilson, Nicola, Wouters, Eveline, Zins, Marie, Mercier, Jacques, Bousquet, Jean, Malva, Joao, Nogues, Michel, Mañas, Leocadio Rodriguez, Vellas, Bruno, and Farrell, John

Published
2015
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169. With power comes vulnerability

Author

Bortolotti, L, Sandis, C, Blasimme, Alessandro, University of Zurich, and Chan, Sarah

Subjects
610 Medicine & health, 10060 Epidemiology, Biostatistics and Prevention Institute (EBPI)
Published
2016

170. Mild behavioral impairment: Ethical, methodological and clinical reflections

Author

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

Subjects
2805 Cognitive Neuroscience, Overdiagnosis, Cognitive Neuroscience, 610 Medicine & health, Morals, 3206 Neuropsychology and Physiological Psychology, 03 medical and health sciences, Behavioral Neuroscience, 0302 clinical medicine, 2802 Behavioral Neuroscience, medicine, Dementia, Humans, 030212 general & internal medicine, Operationalization, Pre-dementia conditions, Neurodegenerative Diseases, 10060 Epidemiology, Biostatistics and Prevention Institute (EBPI), medicine.disease, Neuropsychiatric symptoms, Neuropsychology and Physiological Psychology, Construct (philosophy), Psychology, 030217 neurology & neurosurgery, Clinical psychology
Abstract

The concept of “mild behavioral impairment” (MBI) has been recently introduced and tentatively operationalized. The rationale supporting the need of such novel construct is that neuropsychiatric symptoms (NPS), even when they do not configure major psychiatric disorders, may still constitute early manifestations of neurodegenerative diseases, potentially anticipating the onset of dementia. The conception of MBI as a potential pre-dementia phenotype is surely of interest because posing special attention to neuropsychiatric symptoms and their negative implications. Nevertheless, several issues should be carefully considered in the definition of MBI and are discussed in the present Commentary.

Published
2016

171. Governare la biomedicina: l'etica della ricerca scientifica come questione pubblica

Author

Alessandro Blasimme

Abstract

L'articolo prende in esame i problemi etici connessi con le scienze della vita e i modelli di decisione pubblica messi in atto per fare fronte al crescente disaccordo morale sui metodi e gli scopi della ricerca. Mostra inoltre come negli ultimi decenni si siano affermati modelli didella scienza improntati a visioni differenti dei rapporti tra comunitŕ scientifica, comunitŕ bioetica e decisori pubblici. Fornisce infine un'analisi dei fondamenti teorici generali di tali modelli.

Published
2011

175. Cell Reprogramming Requires Silencing of a Core Subset of Polycomb Targets

Author

Cesar Sommer, Alessandro Cuomo, E. Signaroldi, Pasquale Laise, Giuseppe Testa, Tiziana Bonaldi, Giancarlo Pruneri, Fridolin Gross, Giovanni Mazzarol, Giulia Fragola, Stefano Casola, Pierre-Luc Germain, Gabriele Bucci, Gustavo Mostoslavsky, Alessandro Blasimme, European Institute of Oncology [Milan] (ESMO), FIRC Institute of Molecular Oncology Foundation, IFOM, Istituto FIRC di Oncologia Molecolare (IFOM), Boston University School of Medicine (BUSM), Boston University [Boston] (BU), and Blasimme, Alessandro

Subjects
Cancer Research, Jumonji Domain-Containing Histone Demethylases, Somatic cell, Cellular differentiation, Gene Expression, Polycomb-Group Proteins, [SDV.GEN] Life Sciences [q-bio]/Genetics, Cell Fate Determination, Histones, Mice, Molecular Cell Biology, Induced pluripotent stem cell, Genetics (clinical), Genetics, Stem Cells, Polycomb Repressive Complex 2, Cell Differentiation, Genomics, Chromatin, Cell biology, DNA methylation, Epigenetics, Cellular Types, Reprogramming, Research Article, lcsh:QH426-470, Induced Pluripotent Stem Cells, [SDV.BC]Life Sciences [q-bio]/Cellular Biology, macromolecular substances, Biology, Molecular Genetics, Polycomb-group proteins, Animals, Enhancer of Zeste Homolog 2 Protein, Gene Silencing, Gene Networks, [SDV.BC] Life Sciences [q-bio]/Cellular Biology, Molecular Biology, Ecology, Evolution, Behavior and Systematics, Cell Proliferation, [SDV.GEN]Life Sciences [q-bio]/Genetics, Epigenome, Molecular Development, DNA Methylation, Fibroblasts, lcsh:Genetics, Genome Expression Analysis, Octamer Transcription Factor-3, Developmental Biology
Abstract

Transcription factor (TF)–induced reprogramming of somatic cells into induced pluripotent stem cells (iPSC) is associated with genome-wide changes in chromatin modifications. Polycomb-mediated histone H3 lysine-27 trimethylation (H3K27me3) has been proposed as a defining mark that distinguishes the somatic from the iPSC epigenome. Here, we dissected the functional role of H3K27me3 in TF–induced reprogramming through the inactivation of the H3K27 methylase EZH2 at the onset of reprogramming. Our results demonstrate that surprisingly the establishment of functional iPSC proceeds despite global loss of H3K27me3. iPSC lacking EZH2 efficiently silenced the somatic transcriptome and differentiated into tissues derived from the three germ layers. Remarkably, the genome-wide analysis of H3K27me3 in Ezh2 mutant iPSC cells revealed the retention of this mark on a highly selected group of Polycomb targets enriched for developmental regulators controlling the expression of lineage specific genes. Erasure of H3K27me3 from these targets led to a striking impairment in TF–induced reprogramming. These results indicate that PRC2-mediated H3K27 trimethylation is required on a highly selective core of Polycomb targets whose repression enables TF–dependent cell reprogramming., PLoS Genetics, 9 (2), ISSN:1553-7390, ISSN:1553-7404

Published
2013

176. Sentience, Moral Relevance of

Author

Mameli,and, Matteo, Alessandro Blasimme, Lisa Bortolotti, Blasimme, Alessandro, Wiley, Philosophy Department, University of Birmingham [Birmingham], King‘s College London, European School of Molecular Medicine, and Università degli Studi di Milano = University of Milan (UNIMI)

Subjects
media_common.quotation_subject, Agency (philosophy), Pain and pleasure, Moral reasoning, [SDV.ETH] Life Sciences [q-bio]/Ethics, [SDV.ETH]Life Sciences [q-bio]/Ethics, Epistemology, Sadness, Feeling, Intentionality, Sentience, Consequentialism, Psychology, media_common
Abstract

Sentience is a capacity that only some organisms have. It is often assumed that this capacity has moral significance and should have a prominent role in moral thinking. The commonsense notion of sentience (as indicated by the etymology, from the Latin sentiens which means “capable of feeling”) suggests that sentience is a capacity to be in certain kinds of mental states. In the ethical literature, the term “sentience” is often used to refer to the ability to feel pain and pleasure. More generally, sentience can be said to be the capacity to have feelings or sensations, which include pain and pleasure but also visual and auditory sensations, hunger, sadness, and so on. Keywords: abortion; agency; Bentham, Jeremy; consequentialism; ecology; intentionality; moral status; practical (applied) ethics; rights; Singer, Peter

Published
2013

177. 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

178. What mechanisms can't do: Explanatory frameworks and the function of the p53 gene in molecular oncology

Author

Paolo Maugeri, Pierre-Luc Germain, Alessandro Blasimme, Blasimme, Alessandro, 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), European School of Molecular Medicine, Università degli Studi di Milano = University of Milan (UNIMI), Department of Economics, Management and Quantitative Methods, Università degli Studi di Milano = University of Milan (UNIMI)-Faculty of Science and Technology, University of Milan, and Università degli Studi di Milano [Milano] (UNIMI)-Faculty of Science and Technology

Subjects
p53, History, Computer science, Carcinogenesis, media_common.quotation_subject, Discovery, 0603 philosophy, ethics and religion, 03 medical and health sciences, History and Philosophy of Science, Relevance (law), Humans, Function (engineering), Molecular Biology, 030304 developmental biology, media_common, Cancer, 0303 health sciences, Generality, Biological phenomenon, Perspective (graphical), Mechanistic explanation, 06 humanities and the arts, General Medicine, Genes, p53, [SDV.ETH] Life Sciences [q-bio]/Ethics, Explanatory frameworks, Epistemology, [SDV.ETH]Life Sciences [q-bio]/Ethics, Knowledge, 060302 philosophy, Molecular oncology
Abstract

International audience; What has been called the new mechanistic philosophy conceives of mechanisms as the main providers of biological explanation. We draw on the characterization of the p53 gene in molecular oncology, to show that explaining a biological phenomenon (cancer, in our case) implies instead a dynamic interaction between the mechanistic level-rendered at the appropriate degree of ontological resolution-and far more general explanatory tools that perform a fundamental epistemic role in the provision of biological explanations. We call such tools "explanatory frameworks". They are called frameworks to stress their higher level of generality with respect to bare mechanisms; on the other hand, they are called explanatory because, as we show in this paper, their importance in explaining biological phenomena is not secondary with respect to mechanisms. We illustrate how explanatory frameworks establish selective and local criteria of causal relevance that drive the search for, characterisation and usage of biological mechanisms. Furthermore, we show that explanatory frameworks allow for changes of scientific perspective on the causal relevance of mechanisms going beyond the account provided by the new mechanistic philosophy.

Published
2013

179. 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

180. 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

181. The European Court of Human Rights’ Ruling on Unproven Stem Cell Therapies: A Missed Opportunity?

Author

Alessandro Blasimme and Emmanuelle Rial-Sebbag

Subjects
Human rights, Human Rights, media_common.quotation_subject, Stem Cells, Appeal, Cell- and Tissue-Based Therapy, Regional Regulatory Insights, Cell Biology, Hematology, Biology, Regenerative Medicine, Stem Cell Research, Europe, Politics, Italy, Expanded access, Legal definition, Government Regulation, Humans, Patient Safety, Element (criminal law), Missed opportunity, Developmental Biology, Law and economics, media_common
Abstract

On May 6th 2014, the European Court of Human Rights added yet a new element to the judicial history of stem cells as it ruled in Durisotto v. Italy [appeal n. 62804/13]. The ruling rejected a patient claim to access an unproven cell therapy—an outcome that is certainly to be welcomed. However, this ruling is a missed occasion to clarify and reaffirm some important legal distinctions that could have greatly benefited the whole field of regenerative medicine. We claim that the ethical and political assumptions that sustain the regulation of expanded access programs to new therapies should be carefully scrutinized, with particular attention to the justifications for the risks connected to unconventional therapies. A clear legal definition of what counts as compassionate cure as distinct from unregulated and untested therapies cannot be provided unless those points are previously addressed.

Published
2014

182. With power comes vulnerability

Author

Chan, Sarah, Chan, S ( Sarah ), Bortolotti, L, Sandis, C, Blasimme, Alessandro, Chan, Sarah, Chan, S ( Sarah ), Bortolotti, L, Sandis, C, and Blasimme, Alessandro

Published
2016

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

Author

Blasimme, Alessandro, Vayena, Effy, Blasimme, Alessandro, and Vayena, Effy

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.

Published
2016

185. History and Ethics of Stem Cell Research

Author

Alessandro Blasimme, Ariane Dröscher, Blasimme, Alessandro, Fondazione Istituto FIRC di Oncologia Molecorale, Università degli Studi di Milano = University of Milan (UNIMI), School of Economics and Management, and Free University of Bozen-Bolzano

Subjects
Cell theory, business.industry, Bioethics, Biology, [SDV.ETH] Life Sciences [q-bio]/Ethics, Regenerative medicine, [SDV.ETH]Life Sciences [q-bio]/Ethics, Biotechnology, Altered nuclear transfer, Engineering ethics, Stem cell, Distributive justice, Induced pluripotent stem cell, business, Developmental biology
Abstract

The history of stem cell research is considered a recent one, yet, it began as early as the middle of the nineteenth century and is rich in questions, approaches, concepts, tools, methodologies and lines of thought. There are at least nine disciplines or research fields which have made major contributions: botany and horticulture; cell theory; evolutionary biology; embryology and developmental biology; haematology; cell and tissue culture; regeneration biology; teratology and teratogeny and cancer research. Moreover, as soon as efforts aimed at extracting and culturing pluripotent cells from human embryos proved successful in 1998, stem cells became objects of bioethical controversy. The moral status of the embryo will be discussed, together with proposed technical means to avoid its destruction, such as altered nuclear transfer, single blastomere biopsy, cytoplasmic hybrids and induced pluripotent stem cells, and the possible ethical problems associated with future medical uses of stem cells. Key Concepts: Far from being a simple technology or a commodity, the study of stem cells concerns a broad spectrum of issues lying at the heart of the phenomenon of life itself, and thus touches on questions that have been on the agenda of biological inquiry for a long time. Like most biological research fields, the history of stem cell research shows a constant weaving and unweaving of many concepts and tools, coming from different experimental settings, lines of thought and at least nine different biomedical areas. At some moments of its history, the ‘stem cell’ has become a more concrete and even manageable object, at other moments it was found difficult to localise the phenomenon of self-renewal in one or in a few cells. Recently, stem cell research is characterised by harsh bioethical controversy, mainly revolving around the issue of the moral status of human embryos. Scientists have proposed some technical ways for circumventing ethical problems, but other morally relevant issues still lie before stem cell research. In the future, medical innovation through stem cell-based regenerative medicine is likely to give rise to issues regarding safety, ethical oversight and distributive justice. Keywords: regeneration; embryo; bioethics; altered nuclear transfer (ANT); induced pluripotent stem (iPS) cell; cybrid; distributive justice

Published
2011

186. Improving the Measurement of Scientific Success by Reporting a Self-Citation Index

Author

Alessandro Blasimme, Justin W. Flatt, and Effy Vayena

Subjects
Scientific assessment, Scientific success, Computer science, Scopus, Library and Information Sciences, Bibliometrics, 050905 science studies, Publication ethics, publication ethics, citation ethics, self-citation, h-index, self-citation index, bibliometrics, scientific assessment, scientific success, lcsh:Communication. Mass media, Citation analysis, Citation ethics, Media Technology, Business and International Management, Self-citation index, Publication, business.industry, Communication, lcsh:Information resources (General), 05 social sciences, Self-citation, Public relations, H-index, Popularity, Transparency (behavior), lcsh:P87-96, Computer Science Applications, Index (publishing), Workforce, 0509 other social sciences, 050904 information & library sciences, business, lcsh:ZA3040-5185
Abstract

Who among the many researchers is most likely to usher in a new era of scientific breakthroughs? This question is of critical importance to universities, funding agencies, as well as scientists who must compete under great pressure for limited amounts of research money. Citations are the current primary means of evaluating one’s scientific productivity and impact, and while often helpful, there is growing concern over the use of excessive self-citations to help build sustainable careers in science. Incorporating superfluous self-citations in one’s writings requires little effort, receives virtually no penalty, and can boost, albeit artificially, scholarly impact and visibility, which are both necessary for moving up the academic ladder. Such behavior is likely to increase, given the recent explosive rise in popularity of web-based citation analysis tools (Web of Science, Google Scholar, Scopus, and Altmetric) that rank research performance. Here, we argue for new metrics centered on transparency to help curb this form of self-promotion that, if left unchecked, can have a negative impact on the scientific workforce, the way that we publish new knowledge, and ultimately the course of scientific advance., Publications, 5 (3), ISSN:2304-6775

Published
2017

187. La creazione di ibridi e chimere tra scienza e bioetica

Author

Blasimme, Alessandro, European School of Molecular Medicine, Università degli Studi di Milano = University of Milan (UNIMI), and Blasimme, Alessandro

Subjects
[SDV.ETH] Life Sciences [q-bio]/Ethics, [SDV.ETH]Life Sciences [q-bio]/Ethics
Abstract

Present adress for Alessandro Blasimme: INSERM UMR 1027, Université de Toulouse 3-Paul Sabatier; International audience; L'autore vuole chiarire i termini di una questione molto dibattuta: la creazione di artefatti biologici interspecifici, anche noti nel gergo della medicina e della bioetica come Human/non-Human Interspecifics (HNHIs). La stampa non scientifica li chiama "embrioni chimera", suscitando lo sconcerto e l'orrore del vasto pubblico. La prima parte dell'articolo è una dettagliata classificazione delle tecniche utilizzate in campo biomedico per ottenere linee cellulari da materiale biologico proveniente da specie diverse, a cui segue la descrizione degli obiettivi conoscitivi e applicativi perseguiti dagli scienziati. In particolare l'autore descrive i protocolli scientifici intrapresi in questi anni e dettaglia il significato dei termini chimera interspecifica, embrione animale chimerico, embrione umano chimerico, embrione ibrido, embrione transgenico e ibrido citiplasmatico o cibrido (cybrid). La seconda parte affronta gli aspetti morali legati a queste tecniche.

Published
2008

191. Operational definition of Active and Healthy Ageing (AHA) : A conceptual framework

Author

Bousquet, J., Kuh, D., Bewick, M., Standberg, T., Farrell, J., Pengelly, R., Joel, M. E., Rodriguez Manas, L., Mercier, J., Bringer, J., Camuzat, T., Bourret, R., Bedbrook, A., Kowalski, M. L., Samolinski, B., Bonini, S., Brayne, C., Michel, J. P., Venne, J., Viriot-Durandal, P., Alonso, J., Avignon, A., Ben-Shlomo, Y., Bousquet, P. J., Combe, B., Cooper, R., Hardy, R., Iaccarino, G., Keil, T., Kesse-Guyot, E., Momas, I., Ritchie, K., Robine, J. M., Thijs, C., Tischer, C., Vellas, B., Zaidi, A., Alonso, F., Ranberg, K. Andersen, Andreeva, V., Ankri, J., Arnavielhe, S., Arshad, H., Auge, P., Berr, C., Bertone, P., Blain, H., Blasimme, A., Buijs, G. J., Caimmi, D., Carriazo, A., Cesario, A., Coletta, J., Cosco, T., Criton, M., Cuisinier, F., Demoly, P., Fernandez-Nocelo, S., Fougere, B., Garcia-Aymerich, J., Goldberg, M., Guldemond, N., Gutter, Z., Harman, D., Hendry, A., Heve, D., Illario, M., Jeandel, C., Krauss-Etschmann, S., Krys, O., Kula, D., Laune, D., Lehmann, S., Maier, D., Malva, J., Matignon, P., Melen, E., Mercier, G., Moda, G., Nizinkska, A., Nogues, M., O'Neill, M., Pelissier, J. Y., Poethig, D., Porta, D., Postma, D., Puisieux, F., Richards, M., Robalo-Cordeiro, C., Romano, V., Roubille, F., Schulz, H., Scott, A., Senesse, P., Slagter, S., Smit, H. A., Somekh, D., Stafford, M., Suanzes, J., Todo-Bom, A., Touchon, J., Traver-Salcedo, V., Van Beurden, M., Varraso, R., Vergara, I., Villalba-Mora, E., Wilson, N., Wouters, E., Zins, M., Bousquet, J., Kuh, D., Bewick, M., Standberg, T., Farrell, J., Pengelly, R., Joel, M. E., Rodriguez Manas, L., Mercier, J., Bringer, J., Camuzat, T., Bourret, R., Bedbrook, A., Kowalski, M. L., Samolinski, B., Bonini, S., Brayne, C., Michel, J. P., Venne, J., Viriot-Durandal, P., Alonso, J., Avignon, A., Ben-Shlomo, Y., Bousquet, P. J., Combe, B., Cooper, R., Hardy, R., Iaccarino, G., Keil, T., Kesse-Guyot, E., Momas, I., Ritchie, K., Robine, J. M., Thijs, C., Tischer, C., Vellas, B., Zaidi, A., Alonso, F., Ranberg, K. Andersen, Andreeva, V., Ankri, J., Arnavielhe, S., Arshad, H., Auge, P., Berr, C., Bertone, P., Blain, H., Blasimme, A., Buijs, G. J., Caimmi, D., Carriazo, A., Cesario, A., Coletta, J., Cosco, T., Criton, M., Cuisinier, F., Demoly, P., Fernandez-Nocelo, S., Fougere, B., Garcia-Aymerich, J., Goldberg, M., Guldemond, N., Gutter, Z., Harman, D., Hendry, A., Heve, D., Illario, M., Jeandel, C., Krauss-Etschmann, S., Krys, O., Kula, D., Laune, D., Lehmann, S., Maier, D., Malva, J., Matignon, P., Melen, E., Mercier, G., Moda, G., Nizinkska, A., Nogues, M., O'Neill, M., Pelissier, J. Y., Poethig, D., Porta, D., Postma, D., Puisieux, F., Richards, M., Robalo-Cordeiro, C., Romano, V., Roubille, F., Schulz, H., Scott, A., Senesse, P., Slagter, S., Smit, H. A., Somekh, D., Stafford, M., Suanzes, J., Todo-Bom, A., Touchon, J., Traver-Salcedo, V., Van Beurden, M., Varraso, R., Vergara, I., Villalba-Mora, E., Wilson, N., Wouters, E., and Zins, M.

Published
2015

192. Operational definition of Active and Healthy Ageing (AHA): A conceptual framework

Author

Cardiometabolic Health, Epi Infectieziekten Team 1, JC onderzoeksprogramma Infectieziekten, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Bousquet, J., Kuh, D., Bewick, M., Standberg, T., Farrell, J., Pengelly, R., Joel, M. E., Rodriguez Manas, L., Mercier, J., Bringer, J., Camuzat, T., Bourret, R., Bedbrook, A., Kowalski, M. L., Samolinski, B., Bonini, S., Brayne, C., Michel, J. P., Venne, J., Viriot-Durandal, P., Alonso, J., Avignon, A., Ben-Shlomo, Y., Bousquet, P. J., Combe, B., Cooper, R., Hardy, R., Iaccarino, G., Keil, T., Kesse-Guyot, E., Momas, I., Ritchie, K., Robine, J. M., Thijs, C., Tischer, C., Vellas, B., Zaidi, A., Alonso, F., Ranberg, K. Andersen, Andreeva, V., Ankri, J., Arnavielhe, S., Arshad, H., Auge, P., Berr, C., Bertone, P., Blain, H., Blasimme, A., Buijs, G. J., Caimmi, D., Carriazo, A., Cesario, A., Coletta, J., Cosco, T., Criton, M., Cuisinier, F., Demoly, P., Fernandez-Nocelo, S., Fougere, B., Garcia-Aymerich, J., Goldberg, M., Guldemond, N., Gutter, Z., Harman, D., Hendry, A., Heve, D., Illario, M., Jeandel, C., Krauss-Etschmann, S., Krys, O., Kula, D., Laune, D., Lehmann, S., Maier, D., Malva, J., Matignon, P., Melen, E., Mercier, G., Moda, G., Nizinkska, A., Nogues, M., O'Neill, M., Pelissier, J. Y., Poethig, D., Porta, D., Postma, D., Puisieux, F., Richards, M., Robalo-Cordeiro, C., Romano, V., Roubille, F., Schulz, H., Scott, A., Senesse, P., Slagter, S., Smit, H. A., Somekh, D., Stafford, M., Suanzes, J., Todo-Bom, A., Touchon, J., Traver-Salcedo, V., Van Beurden, M., Varraso, R., Vergara, I., Villalba-Mora, E., Wilson, N., Wouters, E., Zins, M., Cardiometabolic Health, Epi Infectieziekten Team 1, JC onderzoeksprogramma Infectieziekten, JC onderzoeksprogramma Cardiovasculaire Epidemiologie, Bousquet, J., Kuh, D., Bewick, M., Standberg, T., Farrell, J., Pengelly, R., Joel, M. E., Rodriguez Manas, L., Mercier, J., Bringer, J., Camuzat, T., Bourret, R., Bedbrook, A., Kowalski, M. L., Samolinski, B., Bonini, S., Brayne, C., Michel, J. P., Venne, J., Viriot-Durandal, P., Alonso, J., Avignon, A., Ben-Shlomo, Y., Bousquet, P. J., Combe, B., Cooper, R., Hardy, R., Iaccarino, G., Keil, T., Kesse-Guyot, E., Momas, I., Ritchie, K., Robine, J. M., Thijs, C., Tischer, C., Vellas, B., Zaidi, A., Alonso, F., Ranberg, K. Andersen, Andreeva, V., Ankri, J., Arnavielhe, S., Arshad, H., Auge, P., Berr, C., Bertone, P., Blain, H., Blasimme, A., Buijs, G. J., Caimmi, D., Carriazo, A., Cesario, A., Coletta, J., Cosco, T., Criton, M., Cuisinier, F., Demoly, P., Fernandez-Nocelo, S., Fougere, B., Garcia-Aymerich, J., Goldberg, M., Guldemond, N., Gutter, Z., Harman, D., Hendry, A., Heve, D., Illario, M., Jeandel, C., Krauss-Etschmann, S., Krys, O., Kula, D., Laune, D., Lehmann, S., Maier, D., Malva, J., Matignon, P., Melen, E., Mercier, G., Moda, G., Nizinkska, A., Nogues, M., O'Neill, M., Pelissier, J. Y., Poethig, D., Porta, D., Postma, D., Puisieux, F., Richards, M., Robalo-Cordeiro, C., Romano, V., Roubille, F., Schulz, H., Scott, A., Senesse, P., Slagter, S., Smit, H. A., Somekh, D., Stafford, M., Suanzes, J., Todo-Bom, A., Touchon, J., Traver-Salcedo, V., Van Beurden, M., Varraso, R., Vergara, I., Villalba-Mora, E., Wilson, N., Wouters, E., and Zins, M.

Published
2015

193. Genome Editing and Dialogic Responsibility: “What's in a Name?”

Author

Blasimme, Alessandro, primary, Anegon, Ignacio, additional, Concordet, Jean-Paul, additional, De Vos, John, additional, Dubart-Kupperschmitt, Anne, additional, Fellous, Marc, additional, Fouchet, Pierre, additional, Frydman, Nelly, additional, Giovannangeli, Carine, additional, Jouannet, Pierre, additional, Serre, Jean-Loius, additional, Steffann, Julie, additional, Rial-Sebbag, Emmanuelle, additional, Thomsen, Mogens, additional, and Cambon-Thomsen, Anne, additional

Published
2015
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194. 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

Bousquet, Jean, primary, Malva, Joao, additional, Nogues, Michel, additional, Mañas, Leocadio Rodriguez, additional, Vellas, Bruno, additional, Farrell, John, additional, Bewick, Mike, additional, Kowalski, Marek L., additional, Strandberg, Timo, additional, Alonso, Jordi, additional, Ranberg, Karen Andersen, additional, Ankri, Joël, additional, Barbagallo, Mario, additional, Ben-Shlomo, Yoav, additional, Berr, Claudine, additional, Crooks, George, additional, de Manuel Keenoy, Esteban, additional, Goldberg, Marcel, additional, Guldemond, Nick, additional, Illario, Maddalena, additional, Joel, Marie-Eve, additional, Kesse-Guyot, Emmanuelle, additional, Michel, Jean-Pierre, additional, Pengelly, Richard, additional, Ritchie, Karen, additional, Robine, Jean-Marie, additional, Romano, Valeria, additional, Samolinski, Boleslaw, additional, Schulz, Holger, additional, Thijs, Carel, additional, Touchon, Jacques, additional, Zaidi, Asghar, additional, Apostolo, Joao, additional, Alonso, Federico, additional, Andreeva, Valentina, additional, Arnavielhe, Sylvie, additional, Arshad, Hassan, additional, Avignon, Antoine, additional, Barbolini, Mirca, additional, Bedbrook, Anna, additional, Bertone, Paola, additional, Blain, Hubert, additional, Blasimme, Alessandro, additional, Bonini, Sergio, additional, Bourret, Rodolphe, additional, Bousquet, Philippe-Jean, additional, Brayne, Carol, additional, Bringer, Jacques, additional, Buijs, Govert Joan, additional, Calza, Laura, additional, Camuzat, Thierry, additional, Cano, Antonio, additional, Carriazo, Ana, additional, Cesario, Alfredo, additional, Chavannes, Niels, additional, Combe, Bernard, additional, Coletta, Julia, additional, de Sousa, Jaime Correia, additional, Cosco, Theodore, additional, Criton, Marc, additional, Cuisinier, Frédéric, additional, Demoly, Pascal, additional, Fernandez-Nocelo, Susana, additional, Fougère, Bertrand, additional, Garcia-Aymerich, Judith, additional, Gutter, Zdenec, additional, Harman, Daniel, additional, Hendry, Anne, additional, Hève, Didier, additional, Iaccarino, Guido, additional, Jeandel, Claude, additional, Keil, Thomas, additional, Krys, Olivier, additional, Kula, David, additional, Laune, Daniel, additional, Maier, Dieter, additional, Matignon, Pierre, additional, Melen, Erik, additional, Mercier, Grégoire, additional, Moda, Giuliana, additional, Momas, Isabelle, additional, Pinto, Anabella Mota, additional, Nizinska, Adrianna, additional, Oliveira, Catarina, additional, O'Neill, Martina, additional, Pelissier, Jacques-Yves, additional, Pereira da Silva, Jose Antonio, additional, Poethig, Dagmar, additional, Porta, Danielle, additional, Postma, Dirkje, additional, Puisieux, François, additional, Rebello, Sandra, additional, Robalo-Cordeiro, Carlos, additional, Roubille, François, additional, Santiago, Raquel, additional, Scott, Ann, additional, Senesse, Pierre, additional, Slagter, Sandra, additional, Smit, Henriet A., additional, Somekh, David, additional, Suanzes, Jorge, additional, Tischer, Christina, additional, Todo-Bom, Ana, additional, Traver-Salcedo, Vicente, additional, Van Beurden, Marieke, additional, Varraso, Rafaelle, additional, Venne, Julien, additional, Vergara, Itziar, additional, Villalba-Mora, E., additional, Viriot-Durandal, P., additional, Wilson, Nicola, additional, Wouters, Eveline, additional, Zins, Marie, additional, and Mercier, Jacques, additional

Published
2015
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195. Familial Alzheimer's disease sustained by presenilin 2 mutations: systematic review of literature and genotype-phenotype correlation

Author

Marco Canevelli, Giuseppe Tosto, Nicola Vanacore, Alessio Crestini, Annamaria Confaloni, Giuseppe Bruno, Fernanda Troili, Giuseppina Talarico, Alessandro Blasimme, Gian Luigi Lenzi, and Paola Piscopo

Subjects
medicine.medical_specialty, phenotyping, Cognitive Neuroscience, PRESENILIN 2, presenilin 2, familial alzheimer's disease, alzheimer's disease, genetics of dementia, genotype-phenotype correlation, Disease, medicine.disease_cause, Correlation, Behavioral Neuroscience, Alzheimer Disease, PSEN2, Presenilin-2, medicine, Humans, Family, Psychiatry, Genetic Association Studies, Genetics, Mutation, medicine.disease, Phenotype, Neuropsychology and Physiological Psychology, Familial Alzheimer's disease, Alzheimer's disease, Psychology
Abstract

Familial Alzheimer's disease (FAD), despite representing a rare condition, is attracting a growing interest in the scientific community. Improved phenotyping of FAD cases may have a relevant impact both in clinical and research contexts. We performed a systematic review of studies describing the phenotypic features of FAD cases sustained by PSEN2 mutations, the less common cause of monogenic AD. Special attention was given to the clinical manifestations as well as to the main findings coming from the most commonly and widely adopted diagnostic procedures. Basing on the collected data, we also attempted to conduct a genotype-phenotype correlation analysis. Overall, the mutations involving the PSEN2 gene represent an extremely rare cause of FAD, having been reported to date in less than 200 cases. They are mainly associated, despite some peculiar and heterogeneous features, to a typical AD phenotype. Nevertheless, the frequent occurrence of psychotic symptoms may represent a potential distinctive element. The scarcity of available phenotypic descriptions strongly limits the implementation of genotype-phenotype correlations.

Published
2013

196. Lay perspectives of successful ageing: a systematic review and meta-ethnography

Author

Davide Caimmi, Daniela Porta, Ana Todo-Bom, Rachel Cooper, Theodore Cosco, Carol Brayne, Jaime Perales-Puchalt, Blossom Stephan, Sergio Bonini, Leocadio Rodríguez-Mañas, Elena Villalba-Mora, Matthew Prina, and Alessandro Blasimme

Subjects
medicine.medical_specialty, business.industry, Research, Applied psychology, Geriatric Medicine, Alternative medicine, MEDLINE, General Medicine, PsycINFO, CINAHL, Social engagement, Bioinformatics, Layperson, medicine, Public Health, business, Psychosocial, Qualitative Research, Qualitative research
Abstract

Objectives The aim of the current study was to conduct a systematic review of lay perspectives of successful ageing (SA), synthesise these data using a metaethnographic framework and to provide a snapshot of extant lay perspectives of SA.Design A systematic review of layperson perspectives of SA was conducted across MEDLINE, PsycInfo, CINAHL, EMBASE and ISI Web of Knowledge.Participants Peer-reviewed studies conducting qualitative investigations of lay perspectives of SA were included. Included studies were coded and analysed using NVivo V.9 to examine underlying themes of SA.Results The search strategy identified 7285 articles; 26 articles met the inclusion criteria. Laypersons identified psychosocial components, notably engagement (eg, social engagement), and personal resources (eg, attitude) as integral components of SA more often than ‘physiological’ components, such as longevity or physical functioning. These results also highlight the profound under-representation of non-Western countries and the cultural homogeneity of research participants.Conclusions The current study reveals the importance laypersons place on incorporating psychosocial components into multidimensional models of SA, as well as highlighting the need for increased research with under-represented populations.

Published
2013

198. Democratizing Health Research Through Data Cooperatives.

Author

Blasimme, Alessandro, Vayena, Effy, and Hafen, Ernst

Subjects
*MEDICAL research, *BIG data
Abstract

Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to steer data use according to their motivations, preferences, and concerns. Policy makers can promote this model by recognizing citizens’ rights to access and to obtain a copy of their own data, and by funding distributed data infrastructures piloting new data aggregation models. [ABSTRACT FROM AUTHOR]

Published
2018
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199. Biomedical Big Data: New Models of Control Over Access, Use and Governance.

Author

Vayena, Effy and Blasimme, Alessandro

Subjects
*AUTONOMY (Psychology), *DATABASE management, *ETHICS, *INFORMED consent (Medical law), *MEDICAL ethics, *PRIVACY, *TRUST, *DATA analytics
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. [ABSTRACT FROM AUTHOR]

Published
2017
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