Data Sharing in Mouse Functional GenomicsRome, 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 |
