Towards a Data Sharing Culture: Recommendations for Leadership from Academic
Health Centers

1. National Institutes of Health

2003

Final NIH statement on sharing research data

[NOT-OD-03-032].

Available: http://grants.nih.gov/grants/guide/notice-files/not-od-03-032.html.

Accessed 30 July 2008

2. National Institutes of Health

2007

Policy for sharing of data obtained in NIH supported or conducted

genome-wide association studies [NOT-OD-07-088].

Available: http://grants.nih.gov/grants/guide/notice-files/NOT-OD-07-088.html.

Accessed 30 July 2008

3. caBIG Strategic Planning Workspace

2007

The Cancer Biomedical Informatics Grid (caBIG): Infrastructure and

applications for a worldwide research community.

Stud Health Technol Inform

12

330

334

4. GretheJSBaruCGuptaAJamesMLudaescherB

2005

Biomedical informatics research network: Building a national collaboratory

to hasten the derivation of new understanding and treatment of disease.

Stud Health Technol Inform

112

100

109

5. PiwowarHAChapmanWW

2008

A review of journal policies for sharing research data.

In: Proceedings of the 12th International Conference on Electronic Publishing;

25–27 June 2008; Toronto, Canada. Available: http://elpub.scix.net/cgi-bin/works/Show?001_elpub2008. Accessed 30 July

2008

6. [No authors listed]

2005

Let data speak to data.

Nature

438

531

531

7. PiwowarHADayRSFridsmaDB

2007

Sharing detailed research data is associated with increased citation rate.

PLoS ONE

2

e308

doi:10.1371/journal.pone.0000308

8. American Medical Informatics Association

2007

AMIA 10x10 Program.

Available: http://www.amia.org/10x10. Accessed 30 July 2008

9. ButlerD

2007

Data sharing: The next generation.

Nature

446

10

11

10. [No authors listed]

2007

Time for leadership.

Nat Biotechnol

25

821

11. BlumenthalDCampbellEGGokhaleMYucelRClarridgeB

2006

Data withholding in genetics and the other life sciences: Prevalences and

predictors.

Acad Med

81

137

145

12. TeetersJHarrisKMillmanKOlshausenBSommerF

2008

Data sharing for computational neuroscience.

Neuroinformatics

6

47

55

13. [No authors listed]

2007

Got data.

Nat Neurosci

10

931

931

14. [No authors listed]

2007

Compete, collaborate, compel.

Nat Genet

39

931

15. DaviesHDLangleyJMSpeertDP

1996

Rating authors' contributions to collaborative research: The PICNIC survey

of university departments of pediatrics. Pediatric Investigators' Collaborative Network

on Infections in Canada.

Can Med Assoc J

155

877

882

16. RashidALingKTassoneRResnickPKrautR

2006

Motivating participation by displaying the value of contribution.

In: Proceedings of ACM CHI 2006 Conference on Human Factors in Computing Systems;

22–28 April 2006; Montreal, Canada. Available: http://www.communitylab.org/?q=publication/chi06rashidAl.pdf.

Accessed 30 July 2008

17. AltmanMKingG

2007

A proposed standard for the scholarly citation of quantitative data.

D-Lib Magazine

13

3/4

Available: http://gking.harvard.edu/files/cite.pdf. Accessed 5 August 2008

18. PiwowarHAChapmanWW

2008

Envisioning a data reuse registry [poster].

AMIA 2008 Annual Symposium. Available: http://sharescienceideas.wikispaces.com/Data+Reuse+Registry.

Accessed 5 August 2008

19. VickersA

2006

Whose data set is it anyway? Sharing raw data from randomized trials.

Trials

7

15

20. US Department of Health and Human Services

2003

Standards for privacy of individually identifiable health information and

security standards for the protection of electronic protected health information (HIPAA

privacy and security rules).

45 CFR Parts 160 and 164. Available: http://www.hipaadvisory.com/REGS/finalprivacy/. Accessed 30 July

2008

21. US Department of Health and Human Services: Office for Human Research Protections

2005

Basic HHS policy for protection of human research subjects.

45 CFR Part 46 Subpart A. Available: http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm. Accessed 30

July 2008

22. LiuYAscoliGA

2007

Value added by data sharing: Long-term potentiation of neuroscience

research: A commentary on the 2007 SfN Satellite Symposium on Data Sharing.

Neuroinformatics

5

143

145

23. FosterMWSharpRR

2007

Share and share alike: Deciding how to distribute the scientific and social

benefits of genomic data.

Nat Rev Genet

8

633

639

24. FienbergSE

1994

Sharing statistical data in the biomedical and health sciences: Ethical,

institutional, legal, and professional dimensions.

Annu Rev Public Health

15

1

18

25. 25. [No authors listed]

2001

‘Send me all of your reagents and ideas. We want to work on the

same experiments.’ By Caveman.

J Cell Sci

114

1037

1038

26. SafranCBloomrosenMHammondWELabkoffSMarkel-FoxS

2007

Toward a national framework for the secondary use of health data: An

American Medical Informatics Association White Paper.

J Am Med Inform Assoc

14

1

9

27. Committee on Responsibilities of Authorship in the Biological Sciences, National

Research Council

2003

Sharing publication-related data and materials: Responsibilities of

authorship in the life sciences. The National Academy of Sciences.

Available: http://www.nap.edu/catalog.php?record_id=10613. Accessed 30

July 2008

28. SinnottROMacdonaldALordPWEcklundDJonesA

2005

Large-scale data sharing in the life sciences: Data standards, incentives,

barriers and funding models (The Joint Data Standards Study).

The Biotechnology and Biological Sciences Research Council, The Department of

Trade and Industry, The Joint Information Systems Committee for Support for Research,

The Medical Research Council, The Natural Environment Research Council and The Wellcome

Trust. Available: http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002552.

Accessed 30 July 2008

29. LowranceW

2006

Access to collections of data and materials for heath research: A report to

the Medical Research Council and the Wellcome Trust.

Available: http://www.wellcome.ac.uk/About-us/Publications/Books/Biomedical-ethics/WTX030843.htm.

Accessed 30 July 2008

30. National Institutes of Health

2007

Guidance for developing data-sharing plans for GWAS.

Available: http://grants.nih.gov/grants/gwas/gwas_data_sharing_plan.pdf. Accessed 30

July 2008

31. caBIG

2008

Data sharing plan content guideline draft.

Available: https://cabig.nci.nih.gov/working_groups/DSIC_SLWG/Documents/caBIG_Data_Sharing_Plan_Guideline_20080109.pdf.

Accessed 30 July 2008

32. BallCASherlockGBrazmaA

2004

Funding high-throughput data sharing.

Nat Biotechnol

22

1179

1183

33. RuttenbergAClarkTBugWSamwaldMBodenreiderO

2007

Advancing translational research with the Semantic Web.

BMC Bioinformatics

8

S2

34. DetmerDE

2003

Building the national health information infrastructure for personal

health, health care services, public health, and research.

BMC Med Inform Decis Mak

3

1

35. TheologisADavisRW

2004

To give or not to give? That is the question.

Plant Physiol

135

4

9

36. AltmanRBBenowitzNGurwitzDLunshofJRellingM

2007

Genetic nondiscrimination legislation: A critical prerequisite for

pharmacogenomics data sharing.

Pharmacogenomics

8

519

37. National Committee on Vital Health and Health Statistics

2007

Enhanced protections for uses of health data: A stewardship framework for

“secondary uses” of electronically collected and transmitted health

data.

Available: http://www.centerforhit.org/x2125.xml. Accessed 30 July 2008

38. National Institutes of Health

2007

Points to consider for IRBs and institutions in their review of data

submission plans for institutional certifications under NIH's policy for sharing of data

obtained in NIH Supported or conducted genome-wide association studies (GWAS).

Available: http://grants.nih.gov/grants/gwas/gwas_ptc.pdf. Accessed 30 July

2008

39. HagaS

2007

Exploring attitudes about data disclosure and data-sharing in genomics

research.

NIH grant number 1R03HG004312-01

40. GardnerDTogaAWAscoliGABeattyJTBrinkleyJF

2003

Towards effective and rewarding data sharing.

Neuroinformatics

1

289

295

41. CampbellEGBendavidE

2003

Data-sharing and data-withholding in genetics and the life sciences:

Results of a national survey of technology transfer officers.

J Health Care Law Policy

6

241

255

42. Harvard Faculty of Arts and Sciences

2008

Harvard to collect, disseminate scholarly articles for faculty.

Available: http://www.fas.harvard.edu/home/news_and_events/releases/scholarly_02122008.html.

Accessed 30 July 2008

43. SPARC

2008

Berkeley steps forward with bold initiative to pay authors' open-access

charges.

Available: http://www.arl.org/sparc/publications/articles/memberprofile-berkeley.shtml.

Accessed 30 July 2008

44. University of Wisconsin–Madison

2005

Seed money for open access publishing.

Available: http://www.library.wisc.edu/scp/openaccess/response.html#fund.

Accessed 30 July 2008

45. University of North Carolina–Chapel Hill

2005

Open access authors' fund.

Available: http://www.hsl.unc.edu/Collections/ScholCom/OAFundAnnounce.cfm. Accessed

30 July 2008

46. National Institutes of Health

2008

Revised policy on enhancing public access to archived publications

resulting from NIH-funded research [NOT-OD-08-033].

Available: http://grants.nih.gov/grants/guide/notice-files/not-od-08-033.html.

Accessed 30 July 2008