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International data sharing in medicine

Edited by: Dr Paula Boddington, Dr Jane Kaye

Collection published: 14 July 2011

Last updated: 7 October 2011

The production of vast quantities of high-throughput data is changing the way biomedical research is carried out. Evidence that sharing data aids research and speeds up translation to the clinic has to be balanced with the need to protect data from individuals who have provided samples. The International Data Sharing Conference 2010, hosted by HeLEX, the Centre for Health, Law and Emerging Technologies at the University of Oxford, explored the challenges involved in medical data storage and sharing.

		Debate "Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies Alice K Hawkins, Kieran C O'Doherty BMC Medical Genomics 2011, 4:72 (7 October 2011) Abstract \| Full text \| PDF \| PubMed \| Cited on BioMed Central
		Debate Bridging consent: from toll bridges to lift bridges? Isabelle Budin-Ljøsne, Anne Tassé, Bartha Knoppers, Jennifer R Harris BMC Medical Genomics 2011, 4:69 (4 October 2011) Abstract \| Full text \| PDF \| PubMed
		Correspondence Developing and implementing an institute-wide data sharing policy Stephanie OM Dyke, Tim JP Hubbard Genome Medicine 2011, 3:60 (28 September 2011) Abstract \| Full text \| PDF \| PubMed \| Editor’s summary Tim Hubbard and Stephanie Dyke from the Wellcome Trust Sanger Institute describe how this leading genomic center devised and implemented its institutional data-sharing policy.
		Correspondence Towards a data sharing Code of Conduct for international genomic research Bartha Knoppers, Jennifer R Harris, Anne Tassé, Isabelle Budin-Ljøsne, Jane Kaye, Mylène Deschênes, Ma'n H Zawati Genome Medicine 2011, 3:46 (14 July 2011) Abstract \| Full text \| PDF \| PubMed \| Cited on BioMed Central \| 1 comment \| F1000 Biology \| Editor’s summary An international code of conduct for sharing genomic data is proposed, incorporating seven principles: quality, accessibility, responsibility, security, transparency, accountability and integrity.

		Debate "Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies Alice K Hawkins, Kieran C O'Doherty BMC Medical Genomics 2011, 4:72 (7 October 2011) Abstract \| Full text \| PDF \| PubMed \| Cited on BioMed Central
		Debate Bridging consent: from toll bridges to lift bridges? Isabelle Budin-Ljøsne, Anne Tassé, Bartha Knoppers, Jennifer R Harris BMC Medical Genomics 2011, 4:69 (4 October 2011) Abstract \| Full text \| PDF \| PubMed
		Correspondence Developing and implementing an institute-wide data sharing policy Stephanie OM Dyke, Tim JP Hubbard Genome Medicine 2011, 3:60 (28 September 2011) Abstract \| Full text \| PDF \| PubMed \| Editor’s summary Tim Hubbard and Stephanie Dyke from the Wellcome Trust Sanger Institute describe how this leading genomic center devised and implemented its institutional data-sharing policy.
		Correspondence Towards a data sharing Code of Conduct for international genomic research Bartha Knoppers, Jennifer R Harris, Anne Tassé, Isabelle Budin-Ljøsne, Jane Kaye, Mylène Deschênes, Ma'n H Zawati Genome Medicine 2011, 3:46 (14 July 2011) Abstract \| Full text \| PDF \| PubMed \| Cited on BioMed Central \| 1 comment \| F1000 Biology \| Editor’s summary An international code of conduct for sharing genomic data is proposed, incorporating seven principles: quality, accessibility, responsibility, security, transparency, accountability and integrity.