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Category: Resources Portal || Secondary Category: Meetings || File ID: 64 || Last changed on: 2009-06-05 09:13:38+01

Data Sharing in Mouse Functional Genomics

Rome, 20-22 May 2009

Background documents for CASIMIR Data Sharing Workshop



Community Policies:


Bermuda Sequencing Principles
http://www.ornl.gov/sci/techresources/Human_Genome/research/bermuda.shtml

Fort Lauderdale Agreement
http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/wtd003207.pdf
Local download: http://www.casimir.org.uk/storyfiles/64.0.fl_report.pdf

Bamako Data Sharing code
Local download: http://www.casimir.org.uk/storyfiles/64.0.data_sharing_code_bamako.pdf


Funding agencies’ policies:


Wellcome Trust - http://www.wellcome.ac.uk/About-us/Policy/Policy-and-position-statements/WTX035043.htm
MRC -http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/Datasharinginitiative/Policy/MRC002551
BBSRC - http://www.bbsrc.ac.uk/funding/news/2007/0704_data_sharing.html
Local download: http://www.casimir.org.uk/storyfiles/64.0.data_sharing_policy.pdf
Natural Environmental Research Council (NERC) http://www.nerc.ac.uk/research/sites/data/policy.asp
Economic and Social Research Council (ESRA) http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/Images/DataPolicy2000_tcm6-12051.pdf

US Department of Energy (DOE) http://genomicsgtl.energy.gov/datasharing

NIH Sharing Policies: http://sharing.nih.gov
NIH Data Sharing Policy: http://grants.nih.gov/grants/policy/data_sharing
NIH Genome-Wide Association Studies (GWAS) Policy for Sharing of Data: http://grants.nih.gov/grants/guide/notice-files/NOT-OD-07-088.html
NIH Public Access Policy: http://publicaccess.nih.gov
NIH Principles and Guidelines for Recipients of NIH Research Grants and Contracts on Obtaining and Disseminating Biomedical Research Resources: http://grants.nih.gov/grants/intell-property_64FR72090.pdf
NIH Model Organism Sharing Policy: http://grants.nih.gov/grants/policy/model_organism

Genome Canada - http://www.genomecanada.ca/medias/PDF/EN/DataReleaseandResourceSharingPolicy.pdf

Research Consortia Policies:


ENCODE - http://www.genome.gov/27528022
ICGC - http://www.icgc.org/icgc_document/policies_and_guidelines/data_release_policies
MalariaGen - http://www.malariagen.net/home/science/dataaccess.php
WTCCC - https://www.wtccc.org.uk/info/access_to_data_samples.shtml
1000 Genomes - http://www.1000genomes.org/page.php?page=data
UK National Cancer Research Institute data sharing policy http://www.cancerinformatics.org.uk/datasharing.html
Local download: http://www.casimir.org.uk/storyfiles/64.0.data_sharing_policyapr2006.pdf
International Polar year data policy: http://www.ipy.org/Subcommittees/final_ipy_data_policy.pdf
Canadian Institutes of Health Research outputs access policy: http://www.cihr-irsc.gc.ca/e/34846.html

Relevant International Guidelines:


OECD Principles and Guidelines for Access to Research Data from Public Funding
http://www.oecd.org/dataoecd/9/61/38500813.pdf
OECD Best Practice guidelines for Biological Resource Centres http://www.oecd.org/document/36/0,3343,en_2649_34537_38777060_1_1_1_1,00.html
OECD Guidelines for Human Biobanks and Genetic Research Databases (DRAFT)
http://www.oecd.org/document/12/0,3343,en_2649_34537_40302092_1_1_1_1,00.html
OECD Guidelines for the licensing of genetic inventions
http://www.oecd.org/document/26/0,3343,en_2649_34537_34317658_1_1_1_1,00.html

Other reports:


Access to Collections of Data and Materials for Health Research
http://www.wellcome.ac.uk/stellent/groups/corporatesite/@msh_grants/documents/web_document/wtx030842.pdf

Data Sharing Review
http://www.justice.gov.uk/reviews/datasharing-intro.htm

UK Joint data standards report
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002552

Patenting, IP and exploitation of outputs:

The Association of University Technology Managers (AUTM"s) In the Public
Interest: Nine Points to Consider in Licensing University Technology:
http://www.autm.net/AM/Template.cfm?Section=Nine_Points_to_Consider

Holman, C.M. (2007). The impact of human gene patents on innovation and
access: A survey of human gene patent litigation. UMKC Law Review
76(2):295-361, at 347-348. Draft available at
http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1090562

Natural Sciences and Engineering Research Council of Canada"s Policy on Intellectual Property:
http://www.nserc-crsng.gc.ca/_doc/Policy-Politique_eng.pdf

Genome Canada, Science and Technology Platforms Access Policy,
http://www.genomecanada.ca/medias/PDF/EN/STPlatformaccesspolicy.pdf

Papers



Mills, A.E. and P. Tereskerz. (2008). DNA-based patents: an empirical
analysis. Nature Biotechnology 26(9):993-995.
http://www.ncbi.nlm.nih.gov/pubmed/18779808

Lei, Z., Juneja, R., and B.D. Wright. (2009). Patents versus patenting:
implications of intellectual property protection for biological
research. Nature Biotechnology: 27(1): 36-40.
http://www.ncbi.nlm.nih.gov/pubmed/19131994

Caulfield, T., Cook-Deegan, R.M., et al. (2006). Evidence and anecdotes:
an analysis of human gene patenting controversies. Nature Biotechnology
24(9):1091-1094.
http://www.ncbi.nlm.nih.gov/pubmed/16964215

Blumenthal, D Campbell, .G. , et al. (2006) Data Withholding in Genetics and the Other
Life Sciences: Prevalences and Predictors Academic Medicine 81, 137
http://journals.lww.com/academicmedicine/Fulltext/2006/02000/Data_Withholding_in_Genetics_and_the_Other_Life.6.aspx

Walsh, J.P., Cho, C., and W.M. Cohen. (2002). View from the bench: Patents and material transfers. Science 309:2002-2003.
http://www.ncbi.nlm.nih.gov/pubmed/16179461

Pressman, L., Burgess, R., Cook-Deegan, R.M., McCormack, S.J., et al. (2006). The licensing of DNA patents by US academic institutions: an empirical survey. Nature Biotechnology 24(1):31-39.
http://www.ncbi.nlm.nih.gov/pubmed/16404390

Data access debate


Summary of bermuda principles:
http://www.casimir.org.uk/storyfiles/64.0.summary_of_bermuda_principles.pdf

SIPPI Japan IP survey:
http://www.casimir.org.uk/storyfiles/64.0.sippi_japan_ip_survey.pdf

NHGRI sharing publication related data and materials:
http://www.casimir.org.uk/storyfiles/64.0.nhgri_sharing_publication_related_data_and_materials.pdf

EC Open access to scientific production:
http://www.casimir.org.uk/storyfiles/64.0.ec_open_access_to_scientific_production.pdf

EC- Scientific information in the digital age:
http://www.casimir.org.uk/storyfiles/64.0.ec-_scientific_information_in_the_digital_age.pdf

Joint Data Standards Study Report:
http://www.casimir.org.uk/storyfiles/64.0.joint_data_standards_study_report.pdf

Summary Enabling Data Sharing Workshop:
http://www.casimir.org.uk/storyfiles/64.0.summaryenablingdatasharingworkshop_07.pdf

The Royal Society - Keeping Science Open:
http://www.casimir.org.uk/storyfiles/64.0.2003_-_theroyalsociety-keepingscienceopen.pdf

Intellectual Property and Biotechnology



Gold ER, Adams W, Bernier L, Bubela, T, et al. (2008) Toward a New Era for Intellectual Property: From Confrontation to Negotiation. A Report by The International Expert Group on Biotechnology, Innovation and Intellectual Property. (The Innovation Partnership, 2008).
http://www.casimir.org.uk/storyfiles/64.0.tip_report_e.pdf
Additional material:

data sharing code bamako.pdf

data sharing policy.pdf

data sharing policyapr2006.pdf

fl report.pdf

summary of bermuda principles.pdf

sippi japan ip survey.pdf

nhgri sharing publication related data and materials.pdf

ec open access to scientific production.pdf

ec- scientific information in the digital age.pdf

joint data standards study report.pdf

summaryenablingdatasharingworkshop 07.pdf

2003 - theroyalsociety-keepingscienceopen.pdf

rome final programme.pdf

tip report e.pdf

rome final programme.pdf

rome final programme.pdf
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