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1. 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

2. A New Web-Based Big Data Analytics for Dynamic Public Opinion Mapping in Digital Networks on Contested Biotechnology Fields

Author: Annette Leibing, Mathieu Jacomy, Virginie Tournay, Alessandro Blasimme, Andra Stefania Necula, Centre de recherches politiques de Sciences Po (CEVIPOF), Sciences Po (Sciences Po)-Centre National de la Recherche Scientifique (CNRS), Médialab (Sciences Po) (Médialab), Sciences Po (Sciences Po), Université de Montréal (UdeM), Department of Humanities, Social and Political Sciences [ETH Zürich] (D-GESS), Eidgenössische Technische Hochschule - Swiss Federal Institute of Technology [Zürich] (ETH Zürich), and Centre de recherches politiques de Sciences Po (Sciences Po, CNRS) (CEVIPOF)
Subjects: Data Analysis, 0301 basic medicine, Network science, Big data, Critical technology governance, Public opinion, Biochemistry, Biological Science Disciplines, Digital media, 03 medical and health sciences, 0302 clinical medicine, Surveys and Questionnaires, Political science, Genetics, Data Mining, Humans, Web application, Molecular Biology, Internet, [SHS.SOCIO]Humanities and Social Sciences/Sociology, [SHS.STAT]Humanities and Social Sciences/Methods and statistics, Eurobarometer, business.industry, Stem Cells, [SHS.SCIPO]Humanities and Social Sciences/Political science, Biotechnology, 030104 developmental biology, Analytics, 030220 oncology & carcinogenesis, Molecular Medicine, Public sphere, business
Abstract: The expression “public opinion” has long been part of common parlance. However, its value as a scientific measure has been the topic of abundant academic debates over the past several decades. Such debates have produced more variety and contestations rather than consensus on the very definition of public opinion, let alone on how to measure it. This study reports on the usefulness of web-based big data digital network analytics in deciphering the distributed meanings and sense making related to controversial biotechnology applications. Using stem cell therapies as a case study, we argue that such digital network analysis can complement the traditional opinion polls while avoiding the sampling bias that is typical of opinion polls. Although the polls cannot account for the opinion dynamics, combining them with web-based big data analysis can shed light on three dimensions of public opinion essential for sense making: counts or volume of opinion data, content, and movement of opinions. This approach is particularly promising in the case of ongoing scientific controversies that increasingly overflow into the public sphere morphing into public political debates. In particular, our study focuses as a case study on public controversies over the clinical provision of stem cell therapies. Using web entities specifically addressing stem cell issues, including their dynamic aggregation, the internal architecture of the web corpus we report in this study brings the third dimension of public opinion (movement) into sharper focus. Notably, the corpus of stem cell networks through web connectivity presents hot spots of distributed meaning. Large-scale surveys conducted on these issues, such as the Eurobarometer of Biotechnology, reveal that European citizens only accept research on stem cells if they are highly regulated, while the stem cell digital network analysis presented in this study suggests that distributed meaning is promise centeredness. Although major scientific journals and companies tend to structure public opinion networks, our finding of promise centeredness as a key ingredient of distributed meaning and sense making is consistent with therapeutic tourism that remains as an important facet of the stem cell community despite the lack of material standards. This new approach to digital network analysis has crosscutting corollaries for rethinking the notion of public opinion, be it in electoral preferences or as we discuss in this study, for new ways to measure, monitor, and democratically govern emerging technologies.
Published: 2020

3. The sarcopenia and physical frailty in older people: multi-component treatment strategies (SPRINTT) project: description and feasibility of a nutrition intervention in community-dwelling older Europeans

Author: Jyvakorpi S. K., Ramel A., Strandberg T. E., Piotrowicz K., Blaszczyk-Bebenek E., Urtamo A., Rempe H. M., Geirsdottir O., Vagnerova T., Billot M., Larreur A., Savera G., Soriano G., Picauron C., Tagliaferri S., Sanchez-Puelles C., Cadenas V. S., Perl A., Tirrel L., Ohman H., Weling-Scheepers C., Ambrosi S., Costantini A., Pavelkova K., Klimkova M., Freiberger E., Jonsson P. V., Marzetti E., Pitkala K. H., Landi F., Calvani R., Bernabei R., Boni C., Brandi V., Broccatelli M., Celesti C., Cicchetti A., Collamati A., Coretti S., D'Angelo E., D'Elia M., Landi G., Lorenzi M., Mariotti L., Martone A. M., Ortolani E., Pafundi T., Picca A., Ruggeri M., Salini S., Tosato M., Vetrano D. L., Lattanzio F., Baldoni R., Bernabei S., Bonfigli A. R., Bustacchini S., Carrieri B., Cassetta L., Cherubini A., Cucchi M., Cucchieri G., Costantini A. R., Dell'Aquila G., Espinosa E., Fedecostante M., Fraternali R., Galeazzi R., Mengarelli A., Piomboni S., Posacki E., Severini E., Tregambe T., Trotta F., Maggio M., Lauretani F., Butto V., Fisichella A., Guareschi C., Longobucco Y., Di Bari M., Rodriguez-Manas L., Alamo S., Bouzon C. A., Gonzales Turin J., Zafra O. L. L., Picazo A. L., Sepulveda L. P., SanchezSanchez J. L., Puelles C. S., Aragones M. V., CruzJentoft A. J., Santos J. A., Alvarez-Nebreda L., JimenezJimenez N. F., Nozal J. M. -D., Montero-Errasquin B., Moreno B. P. B. P., Roldan-Plaza C., Vicente A. R. -D., Sanchez-Cadenas V., Sanchez-Castellano C., Sanchez-Garcia E., Vaquero-Pinto M. N., Topinkova E., Bautzka L., Blechova K., Gueye T., Juklickova I., Klbikova T., Krenkova J. J., Madlova P., Mejstrikova H., Melcova R., Michalkova H., Ryznarova I., Drastichova I., Hasalikova E., Hucko R., Jakub S., Janacova M., Kilmkova M., Parizkova M., Redrova M., Ruskova P. P., Sieber C. C., Auerswald T., Engel C., Franke A., Freibergen E., Freiheit U., Gotthardt S., Kampe K., Kob R., Kokott C., Kraska C., Meyer C., Reith V., Rempe H., Schoene D., Sieber G., Zielinski K., Anker S. D., Ebner N., Grutz R., von Haehling S., Schols A. M. W. J., Gosker H., Huysmans S., Quaaden S., Schols J. M., Smeets N., Stevens P., van de Bool C., Weling C., Strandberg T., Jyvakorpi S., Hallikas K., Herranen M., Huusko T., Hytonen L., Ikonen K., Karppi-Sjoblom A., Karvinen K., Kayhty M., Kindsted T., Landstrom E., Leirimaa S., Pitkala K., Punkka A., Saavalainen A. -M., Salo T., Sepa M., Sohlberg K., Vaatamoinen E., Venalainen S., Vanhanen H., Vellas B., Van Kan G. A., Biville V., Brigitte L., Cervera C., Cesari M., Champarnaud M., Cluzan C., Croizet M., Dardenne S., Dorard M., Dupuy C., Durand E., Faisant C., Fougere B., Girard P., Guyonnet S., Hoogendijk E., Mauroux R., Milhet A., Montel S., Ousset P. -J., Teguo M. T., Teysseyre B., Andrieu S., Blasimme A., Dray C., Rial-Sebbag E., Valet P., Dantoine T., Cardinaud N., Castelli M., Charenton-Blavignac M., Ciccolari-Micaldi C., Gayot C., Laubarie-Mouriet C., Marchesseau D., Mergans T., Nguyen T. B., Papon A., Ribet J., Saulinier I., Tchalla A., Rapp T., Sirven N., Skalska A., Blaszcyk E., Cwynar M., Czesak J., Fatyga P., Fedyk-Lukasik M., Grodzicki T., Jamrozik P., Janusz Z., Klimek E., Komoniewska S., Kret M., Ozog M., Parnicka A., Petitjean K., Pietrzyk A., Skalska-Dulinska B., Starzyk D., Szczerbinska K., Witkiewicz B., Wlodarczyk A., Sinclair A., Harris S., Ogborne A., Ritchie S., Sinclair C., Sinclair H., Bellary S., Worthington H., Derejczyk J., Roller-Wirnsberger R., Jonsson P., Bordes P., Arnaud S., Asbrand C., Bejuit R., Durand S., Flechsenhar K., Joly F., Lain R. L., Moncharmont M., Msihid J., Ndja A., Riche B., Weber A. C., Yuan J., Roubenoff R., Kortebein P., Miller R. R., Gorostiaga C., Belissa-Mathiot P., Hu H., Laigle L., Melchor I. M., Russel A., Bennecky M., Haws T., Joshi A., Philpott K., Walker A., Zia G., Giorgi S. D., Feletti L., Marchioro E., Mocci F., Varesio M. G., Cesario A., Cabin B., de Boer W. P., Ignaszewski C., Klingmann I., Vollenbroek-Hutten M., Hermens T., Jansen-Kosterink S., Tabak M., Blandin P., Coutard L., Lenzotti A. -M., Mokhtari H., Rodon N., RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, RS: CAPHRI - R1 - Ageing and Long-Term Care, Health Services Research, Handicap, Activité, Vieillissement, Autonomie, Environnement (HAVAE), Institut Génomique, Environnement, Immunité, Santé, Thérapeutique (GEIST), Université de Limoges (UNILIM)-Université de Limoges (UNILIM), Clinicum, Department of General Practice and Primary Health Care, University of Helsinki, HUS Internal Medicine and Rehabilitation, Timo Strandberg / Principal Investigator, Department of Medicine, Helsinki University Hospital Area, Teachers' Academy, Jyvakorpi S.K., Ramel A., Strandberg T.E., Piotrowicz K., Blaszczyk-Bebenek E., Urtamo A., Rempe H.M., Geirsdottir O., Vagnerova T., Billot M., Larreur A., Savera G., Soriano G., Picauron C., Tagliaferri S., Sanchez-Puelles C., Cadenas V.S., Perl A., Tirrel L., Ohman H., Weling-Scheepers C., Ambrosi S., Costantini A., Pavelkova K., Klimkova M., Freiberger E., Jonsson P.V., Marzetti E., Pitkala K.H., Landi F., Calvani R., Bernabei R., Boni C., Brandi V., Broccatelli M., Celesti C., Cicchetti A., Collamati A., Coretti S., D'Angelo E., D'Elia M., Landi G., Lorenzi M., Mariotti L., Martone A.M., Ortolani E., Pafundi T., Picca A., Ruggeri M., Salini S., Tosato M., Vetrano D.L., Lattanzio F., Baldoni R., Bernabei S., Bonfigli A.R., Bustacchini S., Carrieri B., Cassetta L., Cherubini A., Cucchi M., Cucchieri G., Costantini A.R., Dell'Aquila G., Espinosa E., Fedecostante M., Fraternali R., Galeazzi R., Mengarelli A., Piomboni S., Posacki E., Severini E., Tregambe T., Trotta F., Maggio M., Lauretani F., Butto V., Fisichella A., Guareschi C., Longobucco Y., Di Bari M., Rodriguez-Manas L., Alamo S., Bouzon C.A., Gonzales Turin J., Zafra O.L.L., Picazo A.L., Sepulveda L.P., SanchezSanchez J.L., Puelles C.S., Aragones M.V., CruzJentoft A.J., Santos J.A., Alvarez-Nebreda L., JimenezJimenez N.F., Nozal J.M.-D., Montero-Errasquin B., Moreno B.P.B.P., Roldan-Plaza C., Vicente A.R.-D., Sanchez-Cadenas V., Sanchez-Castellano C., Sanchez-Garcia E., Vaquero-Pinto M.N., Topinkova E., Bautzka L., Blechova K., Gueye T., Juklickova I., Klbikova T., Krenkova J.J., Madlova P., Mejstrikova H., Melcova R., Michalkova H., Ryznarova I., Drastichova I., Hasalikova E., Hucko R., Jakub S., Janacova M., Kilmkova M., Parizkova M., Redrova M., Ruskova P.P., Sieber C.C., Auerswald T., Engel C., Franke A., Freibergen E., Freiheit U., Gotthardt S., Kampe K., Kob R., Kokott C., Kraska C., Meyer C., Reith V., Rempe H., Schoene D., Sieber G., Zielinski K., Anker S.D., Ebner N., Grutz R., von Haehling S., Schols A.M.W.J., Gosker H., Huysmans S., Quaaden S., Schols J.M., Smeets N., Stevens P., van de Bool C., Weling C., Strandberg T., Jyvakorpi S., Hallikas K., Herranen M., Huusko T., Hytonen L., Ikonen K., Karppi-Sjoblom A., Karvinen K., Kayhty M., Kindsted T., Landstrom E., Leirimaa S., Pitkala K., Punkka A., Saavalainen A.-M., Salo T., Sepa M., Sohlberg K., Vaatamoinen E., Venalainen S., Vanhanen H., Vellas B., Van Kan G.A., Biville V., Brigitte L., Cervera C., Cesari M., Champarnaud M., Cluzan C., Croizet M., Dardenne S., Dorard M., Dupuy C., Durand E., Faisant C., Fougere B., Girard P., Guyonnet S., Hoogendijk E., Mauroux R., Milhet A., Montel S., Ousset P.-J., Teguo M.T., Teysseyre B., Andrieu S., Blasimme A., Dray C., Rial-Sebbag E., Valet P., Dantoine T., Cardinaud N., Castelli M., Charenton-Blavignac M., Ciccolari-Micaldi C., Gayot C., Laubarie-Mouriet C., Marchesseau D., Mergans T., Nguyen T.B., Papon A., Ribet J., Saulinier I., Tchalla A., Rapp T., Sirven N., Skalska A., Blaszcyk E., Cwynar M., Czesak J., Fatyga P., Fedyk-Lukasik M., Grodzicki T., Jamrozik P., Janusz Z., Klimek E., Komoniewska S., Kret M., Ozog M., Parnicka A., Petitjean K., Pietrzyk A., Skalska-Dulinska B., Starzyk D., Szczerbinska K., Witkiewicz B., Wlodarczyk A., Sinclair A., Harris S., Ogborne A., Ritchie S., Sinclair C., Sinclair H., Bellary S., Worthington H., Derejczyk J., Roller-Wirnsberger R., Jonsson P., Bordes P., Arnaud S., Asbrand C., Bejuit R., Durand S., Flechsenhar K., Joly F., Lain R.L., Moncharmont M., Msihid J., Ndja A., Riche B., Weber A.C., Yuan J., Roubenoff R., Kortebein P., Miller R.R., Gorostiaga C., Belissa-Mathiot P., Hu H., Laigle L., Melchor I.M., Russel A., Bennecky M., Haws T., Joshi A., Philpott K., Walker A., Zia G., Giorgi S.D., Feletti L., Marchioro E., Mocci F., Varesio M.G., Cesario A., Cabin B., de Boer W.P., Ignaszewski C., Klingmann I., Vollenbroek-Hutten M., Hermens T., Jansen-Kosterink S., Tabak M., Blandin P., Coutard L., Lenzotti A.-M., Mokhtari H., Rodon N., Epidemiology and Data Science, APH - Aging & Later Life, and APH - Quality of Care
Subjects: 0301 basic medicine, Gerontology, Sarcopenia, [SDV]Life Sciences [q-bio], Population, PROTEIN, RECOMMENDATIONS, law.invention, SUPPLEMENTATION, 03 medical and health sciences, 0302 clinical medicine, Randomized controlled trial, law, Intervention (counseling), Cultural diversity, medicine, Nutrition counselling, Nutrition intervention, Humans, 030212 general & internal medicine, Medical prescription, education, Exercise, Aged, 2. Zero hunger, education.field_of_study, 030109 nutrition & dietetics, Frailty, business.industry, Settore MED/09 - MEDICINA INTERNA, ADULTS, medicine.disease, mobility, 3. Good health, Feasibility Studie, Malnutrition, SPRINTT, resistance exercise, muscle mass, Protein intake, 3121 General medicine, internal medicine and other clinical medicine, Feasibility Studies, Energy intake, Independent Living, business, Nutrition counseling, Research Paper, Human
Abstract: Aim To describe the methods and feasibility of the nutritional intervention carried out within the SPRINTT Randomized cotrolled trial. We also illustrate how nutrition interventionists identified participants at risk of malnutrition and the lessons learnt from the nutrition intervention. Findings SPRINTT nutrition intervention was well-received by the majority of the participants. It was mainly carried out using tailored nutrition counselling, but also other means of delivering the intervention were successfully used. Compared with a standard nutrition prescription, an individualized protocol to diagnose malnutrition and follow-up by tailored nutrition counselling helped achieve nutritional targets more effectively in spite of diversity of population in nutritional habits and in some cases reluctance to accept changes. Message The SPRINTT nutrition intervention was feasible and allowed flexibility to the varying needs and cultural differences of this heterogeneous population of frail, older Europeans. It may serve as a model to educate and improve nutrition among community-dwelling older people at risk of mobility limitations. Supplementary Information The online version contains supplementary material available at 10.1007/s41999-020-00438-4., Background The “Sarcopenia and Physical Frailty in Older People: Multicomponent Treatment Strategies” (SPRINTT) project sponsored a multi-center randomized controlled trial (RCT) with the objective to determine the effect of physical activity and nutrition intervention for prevention of mobility disability in community-dwelling frail older Europeans. We describe here the design and feasibility of the SPRINTT nutrition intervention, including techniques used by nutrition interventionists to identify those at risk of malnutrition and to carry out the nutrition intervention. Methods SPRINTT RCT recruited older adults (≥ 70 years) from 11 European countries. Eligible participants (n = 1517) had functional limitations measured with Short Physical Performance Battery (SPPB score 3–9) and low muscle mass as determined by DXA scans, but were able to walk 400 m without assistance within 15 min. Participants were followed up for up to 3 years. The nutrition intervention was carried out mainly by individual nutrition counseling. Nutrition goals included achieving a daily protein intake of 1.0–1.2 g/kg body weight, energy intake of 25–30 kcal/kg of body weight/day, and serum vitamin D concentration ≥ 75 mmol/L. Survey on the method strategies and feasibility of the nutrition intervention was sent to all nutrition interventionists of the 16 SPRINTT study sites. Results Nutrition interventionists from all study sites responded to the survey. All responders found that the SPRINTT nutrition intervention was feasible for the target population, and it was well received by the majority. The identification of participants at nutritional risk was accomplished by combining information from interviews, questionnaires, clinical and laboratory data. Although the nutrition intervention was mainly carried out using individual nutritional counselling, other assisting methods were used as appropriate. Conclusion The SPRINTT nutrition intervention was feasible and able to adapt flexibly to varying needs of this heterogeneous population. The procedures adopted to identify older adults at risk of malnutrition and to design the appropriate intervention may serve as a model to deliver nutrition intervention for community-dwelling older people with mobility limitations. Supplementary Information The online version contains supplementary material available at 10.1007/s41999-020-00438-4.
Published: 2021

4. Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action

Author: Felix Gille, Renata Axler, and Alessandro Blasimme
Subjects: Canada, Best practice, Medicine (miscellaneous), General Biochemistry, Genetics and Molecular Biology, 03 medical and health sciences, Good governance, 0302 clinical medicine, Humans, Empirical evidence, Biological Specimen Banks, Social Responsibility, 030219 obstetrics & reproductive medicine, business.industry, Corporate governance, 0402 animal and dairy science, 04 agricultural and veterinary sciences, Cell Biology, General Medicine, Public relations, Private sector, 040201 dairy & animal science, Biobank, Transparency (behavior), Europe, Accountability, Business
Abstract: This article examines biobank transparency mechanisms vis-à-vis their public information, as found on the public biobank webpages. Two independent studies about biobank governance in Europe and Canada identified a lack of governance-related information provided by biobanks on their public webpages. This lack of transparency stands in contrast to governance best practice guidelines highlighting the importance of transparency as a principle of good governance. Transparency is especially important as many biobanks are publicly funded, and it contributes to accountability and supports the development of donor trust in biobanks. Empirical evidence shows that the public supports greater transparency about biobank governance. It will be important that information provided online is relevant and accessible for a variety of different stakeholders (e.g. public and private sector scientists and institutions, donors and potential donors, members of the public). Transparency standards, however, need to be proportionate to avoid the situation that only large-scale biobanks can allocate appropriate resources to fulfil them. Implementing adequate standards of transparency about biobanks' governance will increase accountability but also allow current and future participants to make more informed decisions about their participation in biobank activities.
Published: 2021

5. Overtreating Alzheimer's Disease

Author: Nicola Vanacore, Matteo Cesari, Giuseppe Bruno, Marco Canevelli, and Alessandro Blasimme
Subjects: Geriatrics, Polypharmacy, Aged, 80 and over, medicine.medical_specialty, Aging, Evidence-Based Medicine, business.industry, Frail Elderly, Psychological intervention, Multimorbidity, Disease, medicine.disease, Social issues, Clinical trial, Alzheimer Disease, medicine, Quality of Life, Dementia, Humans, Medical prescription, business, Intensive care medicine, Aged
Abstract: The management of frailty in older persons is not easy, implying interventions beyond the simple prescription of medications. Biological complexity, multimorbidity, polypharmacy, and social issues often hamper the possibility to directly translate the evidence coming from research into clinical practice. Frailty indeed represents the most relevant cause of the “evidence-based medicine issue” influencing clinical decisions in geriatric care. Today, patients with Alzheimer’s disease (AD) are much older and frailer than some decades ago. They also tend to have more drugs prescribed. In parallel, research on AD has evolved over the years, hypothesizing that anticipating the interventions to the earliest stages of the disease may provide beneficial effects (to date, still lacking). In this article, we argue that, by focusing exclusively on “the disease” and pushing to anticipate its detection (sometimes even before the appareance of its clinical manifestations) may overshadow the person’s values and priorities. Research should be developed for better integrating the concept of aging and frailty in the design of clinical trials in order to provide results that can be implemented in real life. On the other hand, clinicians should be less prone to the easy (but unsupported by evidence) pharmacological prescription.
Published: 2021

6. Operational definition of Active and Healthy Ageing (AHA)

Author: Henriette A. Smit, Neil Wilson, Jean-Marie Robine, J. Y. Pelissier, M. Van Beurden, A. Bedbrook, T. Standberg, Vittorio Romano, Bertrand Fougère, J. Garcia-Aymerich, C. Jeandel, Anne Hendry, B. Samolinski, Mike Bewick, Holger Schulz, P. Bertone, Yoav Ben-Shlomo, J. Coletta, D. Poethig, J. P. Michel, Valentina A. Andreeva, M. O'Neill, M. Nogues, K. Andersen Ranberg, Elena Villalba-Mora, Daniel Laune, Itziar Vergara, Maddalena Illario, F. Roubille, G. J. Buijs, J. Venne, Sylvie Arnavielhe, L. Rodriguez Manas, Carol Brayne, David Somekh, T. Camuzat, Jacques Bringer, A. Nizinkska, Marcel Goldberg, Carel Thijs, Alessandro Blasimme, Raphaëlle Varraso, Dieter Maier, Marie Zins, D. Heve, François Puisieux, Theodore D. Cosco, D. Harman, João O. Malva, Thomas Keil, Rachel Cooper, J. Mercier, M. Criton, Alfredo Cesario, Philippe-Jean Bousquet, Jean Bousquet, Davide Caimmi, John Farrell, Emmanuelle Kesse-Guyot, Dirkje S. Postma, Karen Ritchie, Joël Ankri, P. Viriot-Durandal, Pascal Demoly, G. Moda, V. Traver-Salcedo, Susanne Krauss-Etschmann, Daniela Porta, D. Kula, Jordi Alonso, Federico Alonso, Ana Todo-Bom, Frédéric Cuisinier, R. Pengelly, Guido Iaccarino, G. Mercier, C. Robalo-Cordeiro, Eveline Wouters, P. Senesse, P. Matignon, J. Touchon, Sergio Bonini, B. Combe, J. Suanzes, Marek L. Kowalski, A. Zaidi, Isabelle Momas, R. Bourret, Hasan Arshad, A. Avignon, Sylvain Lehmann, Ana Maria Carriazo, Diana Kuh, Claudine Berr, Mai Stafford, A. Scott, Marcus Richards, S. Fernandez-Nocelo, Rebecca Hardy, Z. Gutter, M. E. Joel, Erik Melén, C. Tischer, Sandra N. Slagter, Nick A. Guldemond, Bruno Vellas, H. Blain, P. Auge, O. Krys, 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), 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), 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, 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), Institut de Génétique Moléculaire de Montpellier (IGMM), Université de Montpellier (UM)-Centre National de la Recherche Scientifique (CNRS), 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 (HESAM)-HESAM 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), 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), Mécanismes moléculaires dans les démences neurodégénératives (MMDN), École pratique des hautes études (EPHE), Université Paris sciences et lettres (PSL)-Université Paris sciences et lettres (PSL)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), 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 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 Paris-Est Marne-la-Vallée (UPEM), Université de Montpellier (UM), Euromov (EuroMov), Eindhoven University of Technology [Eindhoven] (TU/e), Laboratoire de Bioingénierie et NanoSciences (LBN), 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), Cellules Souches, Plasticité Cellulaire, Médecine Régénératrice et Immunothérapies (IRMB), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), Astrophysique Interprétation Modélisation (AIM (UMR_7158 / 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), Julius Center for Health Sciences and Primary Care, University Medical Center [Utrecht], 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 (UPC), 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), Centre National de la Recherche Scientifique (CNRS)-Université de Montpellier (UM), 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)), Université Montpellier 1 (UM1)-Université de Montpellier (UM)-Institut National de la Santé et de la Recherche Médicale (INSERM), Université de Montpellier (UM)-Université Montpellier 2 - Sciences et Techniques (UM2)-Institut National de la Santé et de la Recherche Médicale (INSERM)-École pratique des hautes études (EPHE), Université Paris sciences et lettres (PSL)-Université Paris sciences et lettres (PSL), Université Montpellier 1 (UM1)-Université de Montpellier (UM), Université de Montpellier (UM)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), 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 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), 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, Physiologie & médecine expérimentale du Cœur et des Muscles [U 1046] ( PhyMedExp ), Centre National de la Recherche Scientifique ( CNRS ) -Université de Montpellier ( UM ) -Institut National de la Santé et de la Recherche Médicale ( INSERM ), 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 ), 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 ), 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, 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 ), Cognition, Action, et Plasticité Sensorimotrice [Dijon - U1093] ( CAPS ), Université de Bourgogne ( UB ) -Institut National de la Santé et de la Recherche Médicale ( INSERM ), Departement de Cardiologie, Space Science Division, Neuropsychiatrie : recherche épidémiologique et clinique, 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 ), Bousquet, J, Kuh, D, Bewick, M, Standberg, T, Farrell, J, Pengelly, R, Joel, M. E, Rodriguez Mañas, 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, Andersen Ranberg, K, Andreeva, V, Ankri, J, Arnavielhe, S, Arshad, H, Augé, 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, Fougère, B, Garcia Aymerich, J, Goldberg, M, Guldemond, N, Gutter, Z, Harman, D, Hendry, A, Heve, D, Illario, Maddalena, 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., CNR, Rome, Italy and Department of Medicine-University of Naples Federico II = Università degli studi di Napoli Federico II, 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)), École Pratique des Hautes Études (EPHE), 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), Astrophysique Interprétation Modélisation (AIM (UMR7158 / UMR_E_9005 / UM_112)), 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), Bousquet, Jean, Kuh, D., Bewick, M., Standberg, T., Farrell, J., Pengelly, R., Joel, M. E., Rodriguez Mañas, L., Mercier, J., Bringer, J., Camuzat, T., Bourret, R., Bedbrook, A., Kowalski, M. L., Samolinski, B., Bonini, Sergio, 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., Andersen Ranberg, K., Andreeva, V., Ankri, J., Arnavielhe, S., Arshad, H., Augé, 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., Fougère, B., Garcia Aymerich, J., Goldberg, M., Guldemond, N., Gutter, Z., Harman, D., Hendry, A., Heve, D., Illario, M., Jeande, 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., Groningen Research Institute for Asthma and COPD (GRIAC), Epidemiologie, RS: CAPHRI School for Public Health and Primary Care, RS: CAPHRI - R5 - Optimising Patient Care, 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), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Montpellier 2 - Sciences et Techniques (UM2)-Université de Montpellier (UM)-École pratique des hautes études (EPHE), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Institut National de la Santé et de la Recherche Médicale (INSERM), Université Paris-Sud - Paris 11 (UP11)-Assistance publique - Hôpitaux de Paris (AP-HP) (APHP)-Hôpital Antoine Béclère, UMS011 Cohortes épidémiologiques en population (CONSTANCES), and Université de Versailles Saint-Quentin-en-Yvelines (UVSQ)-Institut National de la Santé et de la Recherche Médicale (INSERM)
Subjects: Gerontology, Aging, media_common.quotation_subject, [SDV]Life Sciences [q-bio], EUROPEAN INNOVATION PARTNERSHIP, Population, Medicine (miscellaneous), Social Environment, MACVIA-LR, Quality of life (healthcare), European Innovation Partnership on Active and Healthy Ageing, Active and Healthy Ageing, PREVENTING CHRONIC DISEASES, definition, Nutrition and Dietetics, Geriatrics and Gerontology, LIFE YEARS, Nutrition and Dietetic, Journal Article, Medicine, Humans, DISEASES CHRONIC DISEASES, Function (engineering), education, Exercise, ComputingMilieux_MISCELLANEOUS, POPULATION, media_common, education.field_of_study, [ SDV ] Life Sciences [q-bio], business.industry, Operational definition, EIP, Social environment, Conceptual framework, Health, General partnership, Chronic Disease, Quality of Life, France, Independent Living, business, Independent living, Human, macvia lr
Abstract: Health is a multi-dimensional concept, capturing how people feel and function. The broad concept of Active and Healthy Ageing was proposed by the World Health Organisation (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 it may differ depending on the purpose of the definition and/or the questions raised. While the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) has had a major impact, a definition of Active and Healthy Ageing is urgently needed. A meeting was organised in Montpellier, France, 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) to propose an operational definition of Active and Healthy Ageing including tools that may be used for this. The current paper describes the rationale and the process by which the aims of the meeting will be reached. Health is a multi-dimensional concept, capturing how people feel and function. The broad concept of Active and Healthy Ageing was proposed by the World Health Organisation (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 it may differ depending on the purpose of the definition and/or the questions raised. While the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) has had a major impact, a definition of Active and Healthy Ageing is urgently needed. A meeting was organised in Montpellier, France, 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) to propose an operational definition of Active and Healthy Ageing including tools that may be used for this. The current paper describes the rationale and the process by which the aims of the meeting will be reached.
Published: 2015

7. The Ethics of AI in Biomedical Research, Patient Care, and Public Health

Author: Alessandro Blasimme and Effy Vayena
Subjects: Disease surveillance, medicine.medical_specialty, business.industry, Corporate governance, Public health, Equity (finance), Health promotion, Informed consent, Health care, medicine, Engineering ethics, business, Psychology, Biomedicine
Abstract: This chapter explores ethical issues raised by the use of artificial intelligence (AI) in the domain of biomedical research, healthcare provision, and public health. The litany of ethical challenges that AI in medicine raises cannot be addressed sufficiently by current regulatory and ethical frameworks. The chapter then advances the systemic oversight approach as a governance blueprint, which is based on six principles offering guidance as to the desirable features of oversight structures and processes in the domain of data-intense biomedicine: adaptivity, flexibility, inclusiveness, reflexivity, responsiveness, and monitoring (AFIRRM). In the research domain, ethical review committees will have to incorporate reflexive assessment of the scientific and social merits of AI-driven research and, as a consequence, will have to open their ranks to new professional figures such as social scientists. In the domain of patient care, clinical validation is a crucial issue. Hospitals could equip themselves with “clinical AI oversight bodies” charged with the task of advising clinical administrators. Meanwhile, in the public health sphere, the new level of granularity enabled by AI in disease surveillance or health promotion will have to be negotiated at the level of targeted communities.
Published: 2020

8. 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

9. 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

10. Machine Learning in Medicine

Author: Agata Ferretti, Alessandro Blasimme, and Manuel Schneider
Subjects: business.industry, 06 humanities and the arts, 0603 philosophy, ethics and religion, Machine learning, computer.software_genre, 03 medical and health sciences, 0302 clinical medicine, Political science, 060301 applied ethics, 030212 general & internal medicine, Artificial intelligence, business, Law, computer
Published: 2018

11. 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

12. 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

13. Big data, precision medicine and private insurance: a delicate balancing act

Author: Alessandro Blasimme, Ine Van Hoyweghen, and Effy Vayena
Subjects: 0303 health sciences, Information Systems and Management, Actuarial science, business.industry, Communication, 030305 genetics & heredity, Big data, Adverse selection, lcsh:A, Library and Information Sciences, Precision medicine, 3. Good health, Computer Science Applications, 03 medical and health sciences, 0302 clinical medicine, Information asymmetry, Big Data, information asymmetry, ethics, insurance, adverse selection, 030212 general & internal medicine, Business, Private insurance, lcsh:General Works, Information Systems
Abstract: In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical Big Data or to health-related information derived from it would discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we articulate three principles – trustworthiness, openness and evidence – to address this problem and tame its potentially harmful effects on the development of precision medicine and, more generally, on the advancement of medical science. ispartof: Big Data & Society vol:6 issue:1 pages:1-6 status: Published online
Published: 2019

14. The Ethics of AI in Biomedical Research, Patient Care and Public Health

Author: Alessandro Blasimme and Effy Vayena
Subjects: medicine.medical_specialty, business.industry, Public health, Corporate governance, education, Bioethics, Patient care, Informed consent, Health care, medicine, Engineering ethics, business, Psychology, Medical ethics, Equity (law)
Abstract: This chapter focuses on ethical issues raised by the use of artificial intelligence (AI) in the do-main of health. In particular we discuss specific issues in biomedical research, healthcare provision and public health. We devote particular attention to ethical concerns about safety and evidence standards in biomedical AI; to informed consent and the impact of automation on both professional caregivers and patients; to fairness and discrimination in algorithmic decision making on treatment and disease prevention for individuals and populations; to equity and social justice in the distribution of AI-driven health care and public health. We argue that the litany of ethical challenges that AI in medicine raises cannot be addressed sufficiently by current regulatory and ethical frameworks. We thus propose relevant governance approaches that can help address this gap.
Published: 2019

15. Elements of Trust in Digital Health Systems: Scoping Review

Author: Afua Adjekum, Alessandro Blasimme, and Effy Vayena
Subjects: Knowledge management, 020205 medical informatics, media_common.quotation_subject, digital health, Stakeholder engagement, Health Informatics, 02 engineering and technology, Review, 03 medical and health sciences, 0302 clinical medicine, Health care, 0202 electrical engineering, electronic engineering, information engineering, Humans, 030212 general & internal medicine, media_common, business.industry, End user, Communication, Information quality, digital health technologies, trust, Service provider, Digital health, health care, 3. Good health, Information and Communications Technology, Digital health technologies, Health systems, Trust, business, Delivery of Health Care, health systems, Reputation
Abstract: Background: Information and communication technologies have long become prominent components of health systems. Rapid advances in digital technologies and data science over the last few years are predicted to have a vast impact on health care services, configuring a paradigm shift into what is now commonly referred to as digital health. Forecasted to curb rising health costs as well as to improve health system efficiency and safety, digital health success heavily relies on trust from professional end users, administrators, and patients. Yet, what counts as the building blocks of trust in digital health systems has so far remained underexplored. Objective: The objective of this study was to analyze what relevant stakeholders consider as enablers and impediments of trust in digital health. Methods: We performed a scoping review to map out trust in digital health. To identify relevant digital health studies, we searched 5 electronic databases. Using keywords and Medical Subject Headings, we targeted all relevant studies and set no boundaries for publication year to allow a broad range of studies to be identified. The studies were screened by 2 reviewers after which a predefined data extraction strategy was employed and relevant themes documented. Results: Overall, 278 qualitative, quantitative, mixed-methods, and intervention studies in English, published between 1998 and 2017 and conducted in 40 countries were included in this review. Patients and health care professionals were the two most prominent stakeholders of trust in digital health; a third—health administrators—was substantially less prominent. Our analysis identified cross-cutting personal, institutional, and technological elements of trust that broadly cluster into 16 enablers (altruism, fair data access, ease of use, self-efficacy, sociodemographic factors, recommendation by other users, usefulness, customizable design features, interoperability, privacy, initial face-to-face contact, guidelines for standardized use, stakeholder engagement, improved communication, decreased workloads, and service provider reputation) and 10 impediments (excessive costs, limited accessibility, sociodemographic factors, fear of data exploitation, insufficient training, defective technology, poor information quality, inadequate publicity, time-consuming, and service provider reputation) to trust in digital health. Conclusions: Trust in digital health technologies and services depends on the interplay of a complex set of enablers and impediments. This study is a contribution to ongoing efforts to understand what determines trust in digital health according to different stakeholders. Therefore, it offers valuable points of reference for the implementation of innovative digital health services. Building on insights from this study, actionable metrics can be developed to assess the trustworthiness of digital technologies in health care. ISSN:1438-8871
Published: 2018

16. Machine learning in medicine: Addressing ethical challenges

Author: Effy Vayena, I. Glenn Cohen, and Alessandro Blasimme
Subjects: 020205 medical informatics, Medical Doctors, Health Care Providers, lcsh:Medicine, 02 engineering and technology, Public opinion, computer.software_genre, Medical Records, Machine Learning, 0302 clinical medicine, Computer software, 0202 electrical engineering, electronic engineering, information engineering, Medicine and Health Sciences, Data Protection Act 1998, Data Mining, Confidentiality, 030212 general & internal medicine, Medical Personnel, Allied Health Care Professionals, Data Processing, Attitude to Computers, Applied Mathematics, Simulation and Modeling, Software Development, Software Engineering, General Medicine, 3. Good health, Professions, Accountability, Perspective, Physical Sciences, Engineering and Technology, Psychology, Information Technology, Algorithms, Biotechnology, Medical Ethics, Computer and Information Sciences, Attitude of Health Personnel, MEDLINE, Bioengineering, Machine learning, Research and Analysis Methods, Trust, 03 medical and health sciences, Machine Learning Algorithms, Artificial Intelligence, Humans, Computer Security, Research ethics, business.industry, lcsh:R, Biology and Life Sciences, Transparency (behavior), Health Care, Self Care, Public Opinion, People and Places, Population Groupings, Medical Devices and Equipment, Artificial intelligence, business, computer, Delivery of Health Care, Mathematics
Abstract: Effy Vayena and colleagues argue that machine learning in medicine must offer data protection, algorithmic transparency, and accountability to earn the trust of patients and clinicians.
Published: 2018

17. '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

18. Democratizing Health Research Through Data Cooperatives

Author: Ernst Hafen, Effy Vayena, and Alessandro Blasimme
Subjects: Direct control, Big data, Democratic governance, 0603 philosophy, ethics and religion, 03 medical and health sciences, Data cooperatives, Data sharing, Precision medicine, Ethics, Governance, 0302 clinical medicine, History and Philosophy of Science, 030212 general & internal medicine, Biomedicine, business.industry, Corporate governance, 06 humanities and the arts, Data science, Data aggregator, Philosophy, Data access, 060301 applied ethics, Business
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., Philosophy & Technology, 31 (3), ISSN:2210-5433, ISSN:2210-5441
Published: 2018

19. 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

20. 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

21. 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

22. 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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23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. Next-generation phenotyping and genomic incidental findings: beyond the parkin example

Author: Marco Canevelli and Alessandro Blasimme
Subjects: business.industry, MEDLINE, Medicine, Neurology (clinical), Computational biology, business, Parkin
Published: 2013

31. 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

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31 results on '"Blasimme A"'

1. Future-proofing biobanks’ governance

2. A New Web-Based Big Data Analytics for Dynamic Public Opinion Mapping in Digital Networks on Contested Biotechnology Fields

3. The sarcopenia and physical frailty in older people: multi-component treatment strategies (SPRINTT) project: description and feasibility of a nutrition intervention in community-dwelling older Europeans

4. Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action

5. Overtreating Alzheimer's Disease

6. Operational definition of Active and Healthy Ageing (AHA)

7. The Ethics of AI in Biomedical Research, Patient Care, and Public Health

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

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

10. Machine Learning in Medicine

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

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

13. Big data, precision medicine and private insurance: a delicate balancing act

14. The Ethics of AI in Biomedical Research, Patient Care and Public Health

15. Elements of Trust in Digital Health Systems: Scoping Review

16. Machine learning in medicine: Addressing ethical challenges

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

18. Democratizing Health Research Through Data Cooperatives

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

20. Digital health: meeting the ethical and policy challenges

21. 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

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

23. Societal and global implications of the 'dementia epidemic': the example of the London Heathrow airport

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

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

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

27. History and Ethics of Stem Cell Research

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

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

30. Next-generation phenotyping and genomic incidental findings: beyond the parkin example

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

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31 results on '"Blasimme A"'

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