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2015, The International Library of Ethics, Law and Technology, ISBN 9401795738, Volume 14
Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial... 
Medicine | Ethics | Civil law | Medical ethics
Web Resource
European Neuropsychopharmacology, ISSN 0924-977X, 2017, Volume 27, pp. S475 - S476
To access, purchase, authenticate, or subscribe to the full-text of this article, please visit this link: http://dx.doi.org/10.1016/j.euroneuro.2016.09.557... 
PHARMACOLOGY & PHARMACY | PSYCHIATRY | NEUROSCIENCES | CLINICAL NEUROLOGY | Medical research | Analysis | Depression, Mental | Genomics | Genetic research | Medicine, Experimental | Reverse discrimination | Hälsovetenskaper | Medical and Health Sciences | Medicin och hälsovetenskap | Health Sciences
Journal Article
European journal of human genetics : EJHG, ISSN 1018-4813, 08/2019, Volume 27, Issue 8, pp. 1159 - 1167
The General Data Protection Regulation (GDPR) came into force in May 2018. The aspiration of providing for a high level of protection to individuals' personal... 
CONSENT | BIOCHEMISTRY & MOLECULAR BIOLOGY | GENETICS & HEREDITY | Ethics | General Data Protection Regulation | Policy | Health policy
Journal Article
European Journal of Human Genetics, ISSN 1018-4813, 08/2016, Volume 24, Issue 9, pp. 1248 - 1254
Journal Article
PLoS ONE, ISSN 1932-6203, 09/2019, Volume 14, Issue 9, p. e0221496
Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective... 
Surveys | Technology application | Usage | Databases | Genetic research | Planning | Public-private sector cooperation | Medical research | Biomedical research | Genomics | Attitudes | Partnerships | Data processing | Medicine | Ethics | Researchers | Consent | Informed consent | Transformations | Public health | Communication
Journal Article
Annals of Internal Medicine, ISSN 0003-4819, 2019, Volume 170, Issue 5, pp. 332 - 334
To reproduce study findings and facilitate new discoveries, many funding bodies, publishers, and professional communities are encouraging--and increasingly... 
MEDICINE, GENERAL & INTERNAL | EU directives | Data collection | Scientific method | Regulation | Data integrity
Journal Article
BMC Medical Ethics, ISSN 1472-6939, 01/2017, Volume 18, Issue 1, p. 4
Journal Article
International Journal of Environmental Research and Public Health, ISSN 1661-7827, 10/2018, Volume 15, Issue 10, p. 2072
Journal Article
Advances in Experimental Medicine and Biology, ISSN 0065-2598, 2017, Volume 1031, pp. 589 - 604
Solidarity plays a relevant role in rare diseases (RDs) research to create and enable research in the field. In Europe RDs are estimated to affect between 27... 
Biobanking | Patient associations | Data sharing | Reciprocity | Solidarity | Governance | International research | MEDICINE, RESEARCH & EXPERIMENTAL | ORPHAN DRUGS | DISORDERS | BIOBANKS | DISCOVERY | BIORESOURCES | PLATFORM | PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH | DUTY | WILL | HEALTH | ETHICS
Journal Article
Journal of Community Genetics, ISSN 1868-310X, 4/2018, Volume 9, Issue 2, pp. 177 - 190
This paper outlines some of the challenges faced by regulation of genetic biobanking, using case studies coming from the Italian legal system. The governance... 
Human Genetics | Gene Function | Public Health | Gene Therapy | Data protection | Gene patent | Epidemiology | Privacy | Biobanking | Biomedicine | Genetic data | Informed consent | General Data Protection Regulation | Bankruptcy | Italian law | Case studies | Ethics | Data processing | Genetic resources | Original
Journal Article
EUROPEAN JOURNAL OF HUMAN GENETICS, ISSN 1018-4813, 07/2016, Volume 24, Issue 7, pp. 1096 - 1096
Journal Article
Applied & Translational Genomics, ISSN 2212-0661, 06/2014, Volume 3, Issue 2, pp. 23 - 29
Due to the few patients affected, rare disease research has to count on international registries to exist in order to produce significant research outputs.... 
Privacy | Private sphere | Informed consent | Research barriers
Journal Article