Realities of data sharing using the genome wars as case study - an historical perspective and commentary

EPJ Data Science

Volumn 2, Issue 1, 2013, Pages 1-15

  Jasny, Barbara R ^a  

^a AAAS   (United States)

Author keywords

Data access; Data sharing; Human genome project

Indexed keywords

DATA ACCESS; DATA SHARING; HISTORICAL PERSPECTIVE; HUMAN GENOME PROJECT; HUMAN GENOMES; RESEARCH COMMUNITIES; SCIENCE RESEARCH;

GENES;

EID: 84893098499     PISSN: None     EISSN: 21931127     Source Type: Journal    
DOI: 10.1140/epjds13     Document Type: Article

References (60)

1. Berners-Lee T (2009) Tim Berners-Lee on the next web. www.ted.com/talks/tim_berners_lee_on_the_next_web.html. Accessed 23 Dec 2012
2. Guttmacher AE, Nabel EG, Collins FS (2009) Why data-sharing policies matter. Proc Natl Acad Sci USA 106:16894
3. Louis K, Jones L, Campbell E (2002) Sharing in science. Am Sci 90:304-309
4. Savage CJ, Vickers AJ (2009) Empirical study of data sharing by authors publishing in PLoS journals. PLoS ONE 4(9):e7078
5. Tenopir C, Allard S, Douglass K, Aydinoglu AU, Wu L, Read E, Manoff M, Frame M (2011) Data sharing by scientists: practices and perceptions. PLoS ONE 6(6):e21101
6. Venter JC et al (2001) The sequence of the human genome. Science 291:1304-1351
7. Healy B (1997) BRCA genes - bookmaking, fortunetelling, and medical care. N Engl J Med 337:788-789
8. Heller M, Eisenberg R (1985) Can patents deter innovation: the anticommons in biomedical research. Science 280:698-701
9. National Research Council (2003) Sharing publication-related data and materials: responsibilities of authorship in the life science. National Academies Press, Washington
10. Shreeve J (2004) The genome war: how Craig Venter tried to capture the code of life and save the world. Ballantine Books, New York
11. Eisenberg RS (1993) Technology transfer and the genome project: problems with patenting research pools. Risk Health Saf Environ 5:163-174
12. Dickson D (1996) NIH seeks rapid sequence release. Nature 380:279
13. Bentley DR (1996) Genomic sequence information should be released immediately and freely in the public domain. Science 274:533-534
14. Abbott A (1997) Germany rejects genome data isolation. Nature 387:536
15. Wade N (2000) Rivals on offensive as they near wire in genome race. New York Times, 7 May 2000. http://www.nytimes.com/2000/05/07/us/rivals-on-offensive-as-they-near-wire-in-genome-race.html?pagewanted=all&src=pm. Accessed 23 Dec 2012
16. Service R (2001) Can data banks tally profits? Science 291:1203
17. Koshland D (1988) The price of progress. Science 241:637
18. Sulston J, Ferry G (2002) The common thread. Joseph Henry Press, New York
19. Pike GH (2003) Database protection legislation introduced in Congress. Infotoday. http://newsbreaks.infotoday.com/nbreader.asp?ArticleID=16598. Posted 20 Oct 2003. Accessed 1 Jan 2012
20. White House Office of the Press Secretary (2000) Joint statement by president Clinton and prime minister Tony Blair of the UK, 14 March 2000. http://clinton4.nara.gov/WH/EOP/OSTP/html/00314.html
21. Schehr R, Fox J (2000) Human genome bombshell. Nat Biotechnol 18:365
22. Haq BU, Hardenbol J, Vail PR (1987) Chronology of fluctuating sea levels since the Triassic (250 million years ago to present). Science 235:1156-1167
23. Accessing the Celera human genome sequence data. http://www.sciencemag.org/site/feature/data/announcement/gsp.xhtml. Accessed 23 Dec 2012
24. International Human Genome Sequencing Consortium (2001) Initial sequencing and analysis of the human genome. Nature 409:860-921
25. Chemistry and Industry (2000) Celera makes genome data freely available. http://findarticles.com/p/articles/mi_hb5255/is_2000_Dec_18/ai_n28808580/
26. Kaiser J (2005) Celera to end subscriptions and give data to public GenBank. Science 308:5723
27. Kling J (2005) Where the future went. EMBO Rep 6:1012-1014
28. General information for authors. Science. http://www.sciencemag.org/site/feature/contribinfo/prep/gen_info.xhtml#dataavail. Accessed 3 Dec 2012
29. Macilwain C (2000) Biologists challenge sequencers on parasite genome publication. Nature 405:601-602
30. Contreras JL (2010) Prepublication data release, latency, and genome commons. Science 329:393-394
31. Bell E (2000) Publication rights for sequence data producers. Science 290:1696-1698
32. Rowen L, Hood L (2000) Response. Science 290:1696-1698
33. Hyman R (2001) Sequence data: posted vs. published. Science 291:827
34. Wellcome Trust (2003) Sharing data from large-scale biological research projects: a system of tripartite responsibility. Report of a meeting organized by the Wellcome Trust and held on 14-15 January 2003 at Fort Lauderdale, USA. http://www.genome.gov/Pages/Research/WellcomeReport0303.pdf. Accessed 23 Dec 2012
35. Schekman R (2009) PNAS takes action regarding breach of NIH embargo policy on a PNAS paper. Proc Natl Acad Sci USA 106:16893
36. ENCODE consortium data release policy summary. http://genome.ucsc.edu/ENCODE/terms.html. Accessed 8 Apr 2012
37. Alzheimer’s Disease Neuroimaging Initiative (ADNI) data use agreement. http://adni.loni.ucla.edu/wp-content/uploads/how_to_apply/ADNI_Data_Use_Agreement.pdf. Accessed 8 Apr 2012
38. Gitschier J (2009) Inferential genotyping of Y chromosomes in latter-day saints founders and comparison to Utah samples in the HapMap project. Am J Hum Genet 84:251-258
39. Homer N et al (2008) Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet 4(8):e1000167. doi:10.1371/journal.pgen.1000167
40. P3G Consortium, Church G, Heeney C, Hawkins N, de Vries J et al (2009) Public access to genome-wide data: five views on balancing research with privacy and protection. PLoS Genet 5(10):e1000665. doi:10.1371/journal.pgen.1000665
41. King G (2012) Ensuring the data-rich future of the social sciences. Science 331:719-721
42. Lazer D, Pentland A, Adamic L, Aral S, Barabási A-L, Brewer D, Christakis N, Contractor N, Fowler J, Gutmann M, Jebara T, King G, Macy M, Roy D, Van Alstyne M (2009) Life in the network: the coming age of computational social science. Science 323:721-723
43. Wang P, González MC, Hidalgo CA, Barabási A-L (2009) Understanding the spreading patterns of mobile phone viruses. Science 324:1071-1076
44. Markoff J (2012) Troves of personal data, forbidden to researchers. http://www.nytimes.com/2012/05/22/science/big-data-troves-stay-forbidden-to-social-scientists.html. Accessed 23 Dec 2012
45. Huberman B (2012) Sociology of science: big data deserve a bigger audience. Nature 482:308
46. Barbaro M, Zeller T (2006) A face is exposed for AOL searcher No. 4417749. http://www.nytimes.com/2006/08/09/technology/09aol.html?pagewanted=all. Accessed 3 Dec 2012
47. Wiggins RW (2006) AOL is caught in its own long tail. http://newsbreaks.infotoday.com/nbreader.asp?ArticleID=17374. Accessed 3 Dec 2012
48. Europa press release (2012) Commission proposes a comprehensive reform of data protection rules to increase users’ control of their data and to cut costs for businesses. http://europa.eu/rapid/press-release_IP-12-46_en.htm. Accessed 23 Dec 2012
49. Federal Trade Commission press release (2012) FTC issues final Commission report on protecting consumer privacy, 26 March 2012. http://www.ftc.gov/opa/2012/03/privacyframework.shtm. Accessed 23 Dec 2012
50. Wayner P (2000) Free for all: how Linux and the free software movement undercut the high-tech giants. Harper Collins, New York. http://www.jus.uio.no/sisu/free_for_all.peter_wayner/portrait.pdf. Accessed 23 Dec 2012
51. Suber P (2009) Timeline of the open access movement. www.earlham.edu/~peters/fos/timeline.htm. Accessed 23 Dec 2012
52. Ginsparg P (2001) Creating a global knowledge network. Invited contribution for conference held at UNESCO HQ, Paris, 19-23 Feb 2001, second joint ICSU press - UNESCO expert conference on electronic publishing in science, during session responses from the scientific community, Tue 20 Feb 2001. http://people.ccmr.cornell.edu/~ginsparg/blurb/pg01unesco.html. Accessed 21 Dec 2012
53. Budapest open access initiative. http://www.opensocietyfoundations.org/openaccess/read. Accessed 23 Dec 2012
54. Berlin initiative. http://oa.mpg.de/files/2010/04/berlin_declaration.pdf. Accessed 23 Dec 2012
55. Carr D, Kiley R (2012) Open access to science helps us all. http://www.newstatesman.com/blogs/economics/2012/04/open-access-science-helps-us-all. Accessed 23 Dec 2012
56. Peng RD (2011) Reproducible research in computational science. Science 334:1226-1227
57. Stodden V (2010) Data sharing in social science repositories: facilitating reproducible computational research. http://www.stanford.edu/~vcs/papers/nips2010Stodden12062010.pdf. Accessed 23 Dec 2012
58. National Science Foundation (2011) Grant proposal guide. http://www.nsf.gov/pubs/policydocs/pappguide/nsf11001/gpg_2.jsp#dmp. Accessed 23 Dec 2012
59. University of Michigan Library (2012) NSF data management plans. http://www.lib.umich.edu/research-data-management-and-publishing-support/nsf-data-management-plans# directorate_guide. Accessed 3 Dec 2012
60. Data and Informatics Working Group (2012) Draft report to the Advisory Committee to the Director, 15 June 2012. acd.od.nih.gov/Data%20and%20Informatics%20Working%20Group%20Report.PDF. Accessed 23 Dec 2012