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

Fort Lauderdale Agreement
Local download:

Bamako Data Sharing code
Local download:

Funding agencies’ policies:

Wellcome Trust -
Local download:
Natural Environmental Research Council (NERC)
Economic and Social Research Council (ESRA)

US Department of Energy (DOE)

NIH Sharing Policies:
NIH Data Sharing Policy:
NIH Genome-Wide Association Studies (GWAS) Policy for Sharing of Data:
NIH Public Access Policy:
NIH Principles and Guidelines for Recipients of NIH Research Grants and Contracts on Obtaining and Disseminating Biomedical Research Resources:
NIH Model Organism Sharing Policy:

Genome Canada -

Research Consortia Policies:

MalariaGen -
1000 Genomes -
UK National Cancer Research Institute data sharing policy
Local download:
International Polar year data policy:
Canadian Institutes of Health Research outputs access policy:

Relevant International Guidelines:

OECD Principles and Guidelines for Access to Research Data from Public Funding
OECD Best Practice guidelines for Biological Resource Centres,3343,en_2649_34537_38777060_1_1_1_1,00.html
OECD Guidelines for Human Biobanks and Genetic Research Databases (DRAFT),3343,en_2649_34537_40302092_1_1_1_1,00.html
OECD Guidelines for the licensing of genetic inventions,3343,en_2649_34537_34317658_1_1_1_1,00.html

Other reports:

Access to Collections of Data and Materials for Health Research

Data Sharing Review

UK Joint data standards report

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:

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

Natural Sciences and Engineering Research Council of Canada"s Policy on Intellectual Property:

Genome Canada, Science and Technology Platforms Access Policy,


Mills, A.E. and P. Tereskerz. (2008). DNA-based patents: an empirical
analysis. Nature Biotechnology 26(9):993-995.

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.

Caulfield, T., Cook-Deegan, R.M., et al. (2006). Evidence and anecdotes:
an analysis of human gene patenting controversies. Nature Biotechnology

Blumenthal, D Campbell, .G. , et al. (2006) Data Withholding in Genetics and the Other
Life Sciences: Prevalences and Predictors Academic Medicine 81, 137

Walsh, J.P., Cho, C., and W.M. Cohen. (2002). View from the bench: Patents and material transfers. Science 309:2002-2003.

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.

Data access debate

Summary of bermuda principles:

SIPPI Japan IP survey:

NHGRI sharing publication related data and materials:

EC Open access to scientific production:

EC- Scientific information in the digital age:

Joint Data Standards Study Report:

Summary Enabling Data Sharing Workshop:

The Royal Society - Keeping Science Open:

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).
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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