Ethical, Legal, Social and Practical Barriers to Sharing between Biobanks in Europe
Third-party funded project
Project title Ethical, Legal, Social and Practical Barriers to Sharing between Biobanks in Europe
Principal Investigator(s) Elger, Bernice Simone
Co-Investigator(s) Howard, Heidi
Organisation / Research unit Ethik / Bio- und Medizinethik (Elger)
Project start 01.09.2011
Probable end 31.08.2013
Status Completed
Abstract In the last two decades, important efforts have been made to organize such biological samples such as tissues, blood, DNA, and cells and to organize data into biobanks in order to make these samples and data available for sharing between researchers.  That being said, there remains many barriers and challenges to sharing between researchers and biobanks (whether regionally, nationally or internationally).  The overall objective of this research project is to obtain a better definition and understanding of the ethical, legal, social and practical problems preventing the sharing of data and/or samples between biobanks, as well as between researchers, and to suggest ethically sound (i.e. just) solutions that are feasible in practice.
Financed by Commission of the European Union

Published results ()

  ID Autor(en) Titel ISSN / ISBN Erschienen in Art der Publikation
1006811  Zawati, Ma'n H; Borry, Pascal; Howard, Heidi Carmen  Closure of population biobanks and direct-to-consumer genetic testing companies  0340-6717  Human genetics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
1533582  Borry, Pascal; van Hellemondt, Rachel E; Sprumont, Dominique; Jales, Camilla Fittipaldi Duarte; Rial-Sebbag, Emmanuelle; Spranger, Tade Matthias; Curren, Liam; Kaye, Jane; Nys, Herman; Howard, Heidi  Legislation on direct-to-consumer genetic testing in seven European countries  1018-4813  European journal of human genetics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
1533611  Su, Y.; Otte, I. C.; Borry, P.; Howard, H. C.  'It's our DNA, we deserve the right to test!? A qualitative analysis of a petition for the right to access direct-to-consumer genetic testing without the intermediate of a health care professional'.      Publication: ConferencePaper (Artikel, die in Tagungsbänden erschienen sind) 

Cooperations ()

  ID Kreditinhaber Kooperationspartner Institution Laufzeit - von Laufzeit - bis
1017825  Elger, Bernice Simone  Manai-Wehrli, Dominique, Prof. Dr.  Law Faculty University of Geneva  01.09.2011  31.08.2013 
1017826  Elger, Bernice Simone  Burton-Jeangros, Claudine, Prof. Dr.  Department of Sociology, University of Geneva  01.09.2011  31.08.2013 
1017828  Elger, Bernice Simone  Mauron, Alexandre, Dr.   Bioethics Unit, Faculty of Medicine, University of Geneva  01.09.2011  31.08.2013 
1017831  Elger, Bernice Simone  Antonaraki, Stylianos E., Prof.  Faculty of Medicine, University of Geneva  01.09.2011  30.11.2011 
1023168  Howard, Heidi  Borry, Pascal, Prof. Dr.  Centre for Biomedical Ethics and Law, KULeuven  01.09.2011  31.08.2013 
1023170  Howard, Heidi  Pinxten, Wim, Research Fellow  ErasmusMC, Department of Medical Ethics and Philosophy of Medicine  01.09.2011  31.08.2013 
   

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23/05/2022