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Law, Development and Innovation pp 115–146Cite as

Open Bioinformation in the Life Sciences as a Gatekeeper for Innovation and Development

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Part of the book series: SxI - Springer for Innovation / SxI - Springer per l'Innovazione ((SXIINNO,volume 13))

Abstract

Despite the increasing advocacy towards the “openness” of science and research data, it is still far from being a widespread practice. The goal of this paper is to identify the most pressing obstacles (in terms of funding, technology, Intellectual Property Rights, contracts, data protection, and social norms) which are hindering the development of Open Science and Open Research Data, with particular attention to the situation of developing countries. The innovative aim of this paper, which is the first essay of a broader research, is to prepare the epistemological basis for a Law and Technology theory of “Open Bioinformation” (OB), where bioinformation stands for research data in life sciences. We argue that so far the literature has addressed the promotion of openness in science and research data only in a sectorial manner, taking into account just one or a few of the factors affecting openness as if they were not related or mutually influenced. Therefore, the suggested solutions are limited to a single perspective and fail to consider the dynamics of information control. In our view, a holistic approach, that tries to zoom out from the specific disciplines and take into account the whole picture, would contribute to determining an effective policy for promoting OB. For this reason, we have to consider the technological, legal, and sociological aspects, in order to assess whether and how changes in one domain might affect the others.

Roberto Caso is the author of paragraphs 3 and 6, and co-author of paragraphs 1 and 7; Rossana Ducato is the author of paragraphs 2, 4, 5, and co-author of paragraphs 1 and 7.

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Notes

  1. 1.

    The reference is to Boyle (1997, p. 87).

  2. 2.

    Stiglitz (2008) and Henry and Stiglitz (2010), who argue that poorly designed intellectual property regimes can impede innovation. According to them, there are alternative ways of organizing research—i.e. providing funding and incentives—that can help promote innovation and disseminate its results in a more efficient manner. See also the reflections in Nelson (2004).

  3. 3.

    The term “bioinformation” has not yet been used in the meaning that is proposed here. An analysis of the literature shows it in three occurrences. In a first sense, it is used in bioinformatics to describe biological information in living organisms (see Paton 1996; Kangueane 2009); in a second sense, it is used in forensics to allude to DNA and fingerprints (Nuffield Council of Bioethics 2007); finally, in a third and generic sense, it is mentioned as a synonym of gene/genome (Milosavljevic 2000; Parry (2004)) or as information about the human body, Rose (2001).

  4. 4.

    David and Foray (2002) and Pampel and Dallmeier-Tiessen (2014).

  5. 5.

    From a comparative perspective, we must specify that no particular geographic area will be the object of the analysis: we will mention some general trends shared by the countries of the GS.

  6. 6.

    Quoting James Gleick: “We can see now that information is what our world runs on: the blood and the fuel, the vital principle” (Gleick 2011).

  7. 7.

    West (2006).

  8. 8.

    On the commodification of information caused by the expansion of the IPRs domain and the new possibilities opened up by technology, see Boyle (2003) and Hess and Ostrom (2003). With a specific focus on developing countries, Forero-Pineda (2006).

  9. 9.

    The Human Genome Project (http://www.genome.gov/10001772) was a collaborative research program started in 1990 and aimed at sequencing the entire human genome. The first draft was published in 2001 (International Human Genome Sequencing Consortium: Lander et al. 2001), while the complete sequence was released in April 2003. At the end of the Human Genome Project the cost of the sequencing was around $100 million and in 2014 was estimated at $5,000. See Hayden (2014).

  10. 10.

    Kohane (2011), Jensen et al. (2012), Scott et al. (2012) and Guarda (2013).

  11. 11.

    Rosenthal et al. (2010) and Stein (2010).

  12. 12.

    Topol (2013).

  13. 13.

    Floca (2014, p. 298).

  14. 14.

    In drug discovery, the collaboration among industries, academia, and other funders has been supported by Weigelt (2009). See also, Krumholz et al. (2014).

  15. 15.

    Hagedoorn et al. (2000) and Edwards et al. (2009).

  16. 16.

    http://web.ornl.gov/sci/techresources/Human_Genome/research/bermuda.shtml. Accessed 18.10.2014.

  17. 17.

    http://www.genome.gov/Pages/Research/WellcomeReport0303.pdf. Accessed 18.10.2014.

  18. 18.

    Rodriguez et al. (2009).

  19. 19.

    Toronto International Data Release Workshop Authors (2009).

  20. 20.

    http://www.oecd.org/sti/sci-tech/38500813.pdf. Accessed 18.10.2014.

  21. 21.

    COM(2007)56, http://ec.europa.eu/research/science-society/document_library/pdf_06/communication-022007_en.pdf. Accessed 18.10.2014.

  22. 22.

    Murray-Rust et al. (2010).

  23. 23.

    https://royalsociety.org/~/media/policy/projects/sape/2012-06-20-saoe.pdf.

  24. 24.

    http://unesdoc.unesco.org/images/0021/002158/215863e.pdf. Accessed 18.10.2014.

  25. 25.

    COM(2012) 401, http://ec.europa.eu/research/science-society/document_library/pdf_06/era-communication-towards-better-access-to-scientific-information_en.pdf. Accessed 18.10.2014.

  26. 26.

    C(2012) 4890 final https://ec.europa.eu/research/science-society/document_library/pdf_06/recommendation-access-and-preservation-scientific-information_en.pdf. Accessed 18.10.2014.

  27. 27.

    The pilot was announced in 2013, http://europa.eu/rapid/press-release_IP-13-1257_en.htm. Accessed 18.10.2014; see Article 43 of the Regulation (EU) No 1290/2013 of the European Parliament and of the Council of 11 December 2013 laying down the rules for participation and dissemination in “Horizon 2020—the Framework Programme for Research and Innovation (2014–2020)” and repealing Regulation (EC) No 1906/2006; see also the Guidelines on Open Access to Scientific Publications and Research Data in Horizon 2020, version 1.0, 11 December 2013, http://ec.europa.eu/research/participants/data/ref/h2020/grants_manual/hi/oa_pilot/h2020-hi-oa-pilot-guide_en.pdf. Accessed 18.10.2014.

  28. 28.

    Grubb and Easterbrook (2011) and Frischmann et al. (2014).

  29. 29.

    Maurer (2003). In the same sense, Nielsen (2011).

  30. 30.

    Open Knowledge Foundation (2014, p. 15).

  31. 31.

    Fecher and Friesike (2014).

  32. 32.

    Merton (1942).

  33. 33.

    European Commission (2012), point 3.

  34. 34.

    The definition of research data is hard to find in the literature. According to some authors, because there is no consensus on the notion of data itself, it would be preferable to adopt a very broad approach: the term research data shall “include any kind of data produced in the course of scientific research, such as databases of raw data, tables, graphics, pictures or whatever else”. Dietrich and Wiebe (2013, p. 17). In the same sense, also the EU Guidelines on Open Access to Scientific Publications and Research Data in Horizon 2020 which state that: “Research data refers to information, in particular facts or numbers, collected to be examined and considered and as a basis for reasoning, discussion, or calculation. In a research context, examples of data include statistics, results of experiments, measurements, observations resulting from fieldwork, survey results, interview recordings and images” (footnote 5, p. 3). See also Leonelli (2013b), according to whom: “scientific data can be defined as material artifacts that are collected and used as empirical evidence for the plausibility of claims about the nature of reality (‘the earth revolves around the sun’) and/or the efficacy of specific interventions (‘500 milligrams of paracetamol help to relieve headache’)”.

  35. 35.

    Caulfield et al. (2012).

  36. 36.

    Namely, the Berne Convention for the Protection of Literary and Artistic Works of 9 September 1886 and the UNESCO Universal Copyright Convention of 6 September 1952, as last revised at Paris on 24 July 1971, the Paris Convention for the Protection of Industrial Property of 20 March 1883, as last revised at Stockholm on 14 July 1967, the Budapest Treaty of the WIPO on International Recognition of the Deposit of Micro-organisms for the Purposes of Patent Procedures of 28 April 1977, and the Trade Related Aspects of Intellectual Property Rights Agreement (TRIPs) annexed to the Agreement establishing the World Trade Organization, which entered into force on 1 January 1995.

  37. 37.

    http://unesdoc.unesco.org/images/0013/001306/130646e.pdf. Accessed 18.10.2014. See Kuppuswamy (2009, p. 137 and ff).

  38. 38.

    Caso and Ducato (2014).

  39. 39.

    See Di Bona and Ockman (1999), Raymond Raymond (2000) and Stallman (2002).

  40. 40.

    These are the four fundamental freedoms established by the General Public License manifesto: https://www.gnu.org/gnu/manifesto.en.html. Accessed 18.10.2014.

  41. 41.

    Probably the best known example is the GNU GPL license, created by Richard Stallman. Stallman (1998).

  42. 42.

    Suber (2012). For a complete overview of the OA movement, see Frosio (2014); meanwhile for a specific focus on academic publications, Moscon (2015).

  43. 43.

    https://creativecommons.org/. Accessed 18.10.2014.

  44. 44.

    Lessig (1999), Carroll (2006) and Goss (2007).

  45. 45.

    Rahman (2012, p. 7).

  46. 46.

    The Algiers Declaration was issued by the ministers of health and heads of delegation of African countries, during the Ministerial Conference on Research for Health in the African Region, held in June 2008.

  47. 47.

    Ramsay et al. (2014).

  48. 48.

    http://www.malariagen.net/. Accessed 18.10.2014. For an overview of their data-release policy, see Parker et al. (2009). MalariaGEN is a network that includes several participants from different countries, thus enacting a North-South collaboration.

  49. 49.

    Sirugo et al. (2004).

  50. 50.

    Zain et al. (2013).

  51. 51.

    http://datoscientificos.cl/. Accessed 18.10.2014.

  52. 52.

    Muñoz Palma (2012).

  53. 53.

    http://openscidev.com/. Accessed 18.10.2014. One of the most interesting things is the modus operandi adopted by such a group, which which shares all its documents online via googledocs. So, everyone who wants to contribute to the project and working papers can suggest some edits and comment on the files. All documents are licensed under CC-BY 4.0.

  54. 54.

    Open Knowledge Foundation (2014, p. 17 and ff). See also Chan et al. (2005) and Dulle et al. (2013).

  55. 55.

    Chan et al. (2005), Czerniewicz and Goodier (2014) and Veldsman and Gevers (2014).

  56. 56.

    Hardy et al. (2008).

  57. 57.

    http://www.genome.gov/10001772. Accessed 18.10.2014.

  58. 58.

    According to the data of the World Bank. See http://data.worldbank.org/indicator/NY.GDP.MKTP.CD?order=wbapi_data_value_2013+wbapi_data_value+wbapi_data_value-last&sort=asc. Accessed 18.10.2014.

  59. 59.

    Hardy et al. (2008), Gómez and Bongiovani (2012), Muñoz Palma (2012, p. 24) and Rahman (2012, p. 15).

  60. 60.

    Open Knowledge Foundation (2014, p. 20).

  61. 61.

    Ibid., p. 22; Tindana et al. (2007).

  62. 62.

    Winickoff (2009). The model for realizing such a partnership governance could be found in the charitable trust, according to Winickoff and Winickoff (2003).

  63. 63.

    According to Frischmann, Madison, and Strandburg: “commons governance offers a defense against potential privatization of commonly useful shared resources and the possibility that an individual IP rights owner would “hold up” the enterprise as a whole. Examples of such arrangements might include “open source” commons constructed for basic biological building blocks such as the Single Nucleotide Polymorphism (SNP) consortium or the publicly available databases of genomic sequences that are part of the Human Genome Project. Formal licenses and related agreements assure that participants become part of what amounts to a mutual nonaggression pact that is necessary precisely because of the possibility that intellectual resources may be propertized” (Frischmann et al. 2014, p. 26).

  64. 64.

    Sgaier et al. (2007).

  65. 65.

    Costello and Zumla (2000), Cambon-Thomsen (2004), Dickenson (2004), Knoppers (2005) and Parker et al. (2009). For an overview of the main critical issues of such a practice, see also de Vries et al. (2011).

  66. 66.

    Knoppers (2000).

  67. 67.

    Bastow and Leonelli (2010). The study by Halla Thorsteinsdóttir, Uyen Quach, Abdallah S. Daar and Peter A. Singer shows that political will and public investments have been crucial for the development of health biotechnology in seven developing countries (Brazil, China, Cuba, Egypt, India, South Africa, and South Korea), which have been taken into account as case studies (Thorsteinsdóttir et al. 2004).

  68. 68.

    Muñoz Palma (2012), Mboera (2012) and Inyang (2012).

  69. 69.

    Sirugo et al. (2004), Hardy et al. (2008), Mboera (2012) and Rahman (2012, p. 8).

  70. 70.

    De Roure et al. (2003), Altunay et al. (2010) and Leonelli (2013a).

  71. 71.

    Ankeny and Leonelli (2015).

  72. 72.

    Kahn (2012), Mboera (2012), Leonelli (2013b) and Open Knowledge Foundation (2014, p. 37).

  73. 73.

    Guibault and Wiebe (2013). See also, Reichmann and Uhlir (2003).

  74. 74.

    Trosow (2004) and Davison and Hugenholtz (2005).

  75. 75.

    Reichman and Samuelson (1997), Reichman and Uhlir (1999), David (2000), Reichman and Uhlir (2003, pp. 396 and ff.), David (2004) and Trosow (2004).

  76. 76.

    Dussollier (2002), Caso (2004) and Ginsburg (2005).

  77. 77.

    Guibault and Margoni (2013).

  78. 78.

    Reichman and Uhlir (2003, pp. 402–404), Streitz and Bennett (2003) and Margoni (2013).

  79. 79.

    Kaye (2012), Hoffman (2014) and Mascalzoni et al. (2014).

  80. 80.

    Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data, published in the Official Journal L 281, 23.11.1995, pp. 0031–0050.

  81. 81.

    Directive 2002/58/EC of the European Parliament and of the Council of 12 July 2002 concerning the processing of personal data and the protection of privacy in the electronic communications sector (Directive on privacy and electronic communications), published in the Official Journal L 201, 31.07.2002, pp. 0037–0047.

  82. 82.

    See, in particular, Article 83 of the Draft of the General Data Protection Regulation [COM(2012) 11 final, 25.01.2012]. The text of the proposal is available at the following link: http://ec.europa.eu/justice/data-protection/document/review2012/com_2012_11_en.pdf. Accessed 18.10.2014.

  83. 83.

    Health Insurance Portability and Accountability Act [(45 C.F.R. § 160–164 (2002)]; Federal Drug and Alcohol Confidentiality Statute (42 U.S.C. § 290dd-2); the Common Rule [45 C.F.R. § 46.101 (2005)]; Genetic Information Nondiscrimination Act (42 U.S.C. § 2000ff et seq.).

  84. 84.

    Schwartz (1994), Solove (2004) and Floca (2014).

  85. 85.

    Ohm (2010).

  86. 86.

    Gymrek et al. (2013).

  87. 87.

    Lunshof et al. (2008).

  88. 88.

    Merton (1942).

  89. 89.

    Borgman (2007).

  90. 90.

    Gitter (2013).

  91. 91.

    Mboera (2012) and Rahman (2012, p. 8).

  92. 92.

    The only one legally described and expressly regulated is personal data, which is protected in accordance with national and international data protection rules.

  93. 93.

    Floridi (2010, pp. 25–28).

  94. 94.

    As is well known, copyright protects original works of authorship, but not facts or ideas; meanwhile, patent law grants the temporary monopoly for an invention that is new, involves an inventive step and is susceptible of industrial application. A right of property in data can be detected also in the provisions regarding the protection of a certain type of information, as in the case of know-how (see Article 39 TRIPS).

  95. 95.

    For a general overview, see Derclaye (2014).

  96. 96.

    Such a principle is valid on both sides of the Atlantic. The US system, in fact, protects compilations “as a work formed by the collection and assembling of pre-existing materials or of data that are selected, coordinated, or arranged in such a way that the resulting work as a whole constitutes an original work of authorship” (17 U.S.C. § 101); meanwhile, Directive 96/9/EC on the legal protection of databases states that “databases which, by reason of the selection or arrangement of their contents, constitute the author’s own intellectual creation shall be protected as such by copyright. No other criteria shall be applied to determine their eligibility for that protection” (Article 3). The case law has confirmed the legislative component in the leading case Feist v. Rural, 499 U.S. 340 (1991) for the US system and in the ECJ Case C‑5/08 Infopaq International [2009] ECR I‑6569 and Case C-604/10 Football Dataco Ltd and Others v Yahoo! UK Ltd and Others [2012] ECDR 7 for the EU.

  97. 97.

    For historical accuracy, we have to mention that before the introduction of Directive 96/9/EC, a similar right, namely the “catalogue rule”, already existed in Scandinavian countries (Karnell 1997). Also the US and the Australian systems used to protect the non-creative databases, applying the sweat of the brow doctrine, according to which copyright rewards the efforts and work that go into a compilation of facts. Such a principle was rejected in the US since the notorious case Feist v. Rural (1991), where the Court affirmed: “Without a doubt, the ‘sweat of the brow’ doctrine flouted basic copyright principles. Throughout history, copyright law has ‘recognized a greater need to disseminate factual works than works of fiction or fantasy’. Harper & Row, 471 U.S., at 563. […] But ‘sweat of the brow’ courts took a contrary view; they handed out proprietary interests in facts and declared that authors are absolutely precluded from saving time and effort by relying upon the facts contained in prior works. In truth, ‘it is just such wasted effort that the proscription against the copyright of ideas and facts… [is] designed to prevent’ […] Protection for the fruits of such research… may in certain circumstances be available under a theory of unfair competition. But to accord copyright protection on this basis alone distorts basic copyright principles in that it creates a monopoly in public domain materials without the necessary justification of protecting and encouraging the creation of ‘writings’ by authors”. For a comment, see Fulwood (1991), Ginsburg (1992) and Strong (1994). For the sake of completeness, it should be noted that after the enactment of Directive 96/9/EC, the US Congress tried to re-insert an exclusive right model for database protection similar to the SGR with some legislative proposals in 1996 and 2000. See Reichman and Uhlir (2003).

    The Australian jurisprudence arrives at the same conclusion in the cases IceTV Pty Ltd. v. Nine Network, Australia Pty Ltd. (2009) and Telstra Corporation Limited v Phone Directories Company (2010) (Lindsay 2012).

  98. 98.

    For a general overview of the sui generis right in Europe, see Stamatoudi (1997) and Derclaye (2008), (2014). An introduction to the Mexican provisions regarding the legal protection of databases can be found in Ovilla Bueno (1998), Caballero Leal (2000) and De La Parra Trujillo (2004).

  99. 99.

    ECJ Case C-203/02, British Horseracing Board v. William Hill Organization Ltd (BHB) [2004], ECR I-10415.

  100. 100.

    ECJ Case C-338/02, Fixtures Marketing Ltd v. Svenksa AB (Svenska), [2004] ECR I-10497; ECJ Case C-444/02, Fixtures Marketing Ltd v. Organismos Prognostikon Agonon Podosfairou EG (OPAP), [2004], ECR I-105449; ECJ Case C-46/02, Fixtures Marketing Ltd v. Oy Veikkaus Ab (Oy Veikkaus), [2004] ECR I-10365.

  101. 101.

    British Horseracing Board v. William Hill, para 31.

  102. 102.

    Ibidem.

  103. 103.

    Ibid, para 34.

  104. 104.

    Ibidem.

  105. 105.

    Although the ECJ seems to make a clear distinction, in several cases it can be very hard to find a difference between the obtaining and creation of scientific data. The terms of the debate can be efficiently summarized by referring to the two points of view expressed by Derclaye (2004) and Davison and Hugenholtz (2005).

  106. 106.

    Davison and Hugenholtz (2005).

  107. 107.

    As the Court motivates, in fact: “the purpose of the protection by the sui generis right provided for by the directive is to promote the establishment of storage and processing systems for existing information and not the creation of materials capable of being collected subsequently in a database”. British Horseracing Board v. William Hill, para 34.

  108. 108.

    Ducato (2013) and Guibault and Wiebe (2013).

  109. 109.

    Only The Netherlands has explicitly denied a public authority the ability of exercising the SGR (Article 8, Dutch Database Act). See, Guibault (2013). Although not expressly recognized by the legislative component, also in the Italian legal system it is possible to reach the same conclusion. Legal scholars have, in fact, observed an irresolvable contradiction between the industrial or commercial rationale protected by the Directive and the public goals pursued by a public administration, rejecting the application of the SGR to publicly funded databases. See,  Cardarelli (2002). The same principle has been confirmed also by the case law and precisely by Tribunale di Roma, Sez. IP, ordinanza 5 giugno 2008, Edizioni Cierre s.r.l. v. Poste Italiane s.p.a., in AIDA, 2010, 688.

  110. 110.

    Reichman and Samuelson (1997).

  111. 111.

    See De La Parra Trujillo (2004).

  112. 112.

    Pistorius (2008).

  113. 113.

    The Court here refers to Bosal Africa (Pty) Ltd v Grapnel (Pty) Ltd & Another 1985 4 SA 482 (C); Payen Components SA Ltd v Bovic CC and Others 1995 4 SA 441; CCH Canadian Ltd v Law Society of Upper Canada [2004] 1 SCR 339; Haupt t/a Soft Copy v Brewers Marketing Intelligence (Pty) Ltd and Others 2006 4 SA 458 (SCA).

  114. 114.

    Guibault and Margoni (2013, p. 148). See also, Aliprandi (2011) and Leucci (2014).

  115. 115.

    Creative Commons (CC) is a charitable corporation that promotes the sharing and circulation of knowledge in compliance with copyright law. Although it offers standardized models, its modular licenses (attribution, non-commercial, no derivative works, share alike) and their combinations can provide flexibility in setting the interests of the parties. http://creativecommons.org/.

  116. 116.

    https://creativecommons.org/licenses/.

  117. 117.

    Creative Commons provides two other options, namely “non-commercial” and “no-derivatives”. See, Guibault (2013).

  118. 118.

    http://creativecommons.org/about/cc0.

  119. 119.

    Aliprandi (2011, p. 33).

  120. 120.

    http://creativecommons.org/licenses/by/4.0/.

  121. 121.

    Guibault (2013). For a critical analysis of the previous exclusion of the database SGR from the scope of the CC licenses, see Guibault (2011).

  122. 122.

    http://creativecommons.org/licenses/by/4.0/legalcode.

  123. 123.

    On the other hand, such a possibility carries on the problem of the links’ expiration, which de facto is able to cross the attribution obligation. For a general overview of the problem for digital publication, see Kling and Callahan (2003).

  124. 124.

    http://creativecommons.org/licenses/by-sa/4.0/.

  125. 125.

    The Open Data Commons was one of the first projects in drafting a specific open license for database in 2008 (http://opendatacommons.org/). ODC is now part of the Open Knowledge Foundation, a not-for-profit organization whose associative goal is the promotion of the openness and the sharing of knowledge in its every form. See Pollock and Walsh (2012).

  126. 126.

    The ODC-PDDL is an irrevocable dedication to the public domain through which the rightholder waives all rights and claims in copyright or sui generis database rights over a certain database built in every possible media and formats now known or created in the future. In case the waiver is not valid in a particular jurisdiction, the PDDL includes a worldwide, royalty-free, non-exclusive licence to use the work for any purpose for the duration of any applicable copyright and database rights. See more at: http://opendatacommons.org/licenses/pddl/1.0/.

  127. 127.

    The ODC-By allows users to freely share, modify, and use the database subject only to the attribution requirements in the manner specified in the license. According to the license, the rights of the user consist in the: (1) extraction and re-utilisation of the whole or a substantial part of the Contents; (2) creation of derivative databases; (3) creation of collective databases; (4) creation of temporary or permanent reproductions by any means and in any form, in whole or in part, including any derivative databases or as a part of collective databases; (5) distribution, communication, display, lending, making available, or performance to the public by any means and in any form, in whole or in part, including any derivative database or as a part of collective databases. Even if tailored on database rights, such a license resembles the contents and the aim of the CC-BY. See: http://opendatacommons.org/licenses/by/1.0/.

  128. 128.

    The ODC-ODbL is a license agreement intended to allow users to freely share, modify, and use a database while maintaining this same freedom for others. This is realized through the following clause: “4. Any Derivative Database that You Publicly Use must be only under the terms of: i. This License; ii. A later version of this License similar in spirit to this License; or iii. A compatible license”. See: http://opendatacommons.org/licenses/odbl/1.0/.

  129. 129.

    Aliprandi (2011, pp. 35–36), Guibault and Margoni (2013, p. 155) and Leucci (2014, p. 12).

  130. 130.

    Guibault and Margoni (2013, p. 158).

  131. 131.

    Ankeny and Leonelli (2015).

  132. 132.

    http://www.personalgenomes.org/. Accessed 18.10.2014.

  133. 133.

    http://www.personalgenomes.org/organization/sharing. Accessed 18.10.2014.

  134. 134.

    Bartling and Friesike (2014, p. 8) and Rinaldi (2014).

  135. 135.

    Boggio (2008, p. 10) and Bartling and Friesike (2014, p. 9).

  136. 136.

    Mboera (2012).

  137. 137.

    As in the Polanyi’s view (1962).

  138. 138.

    Borgman (2007, 2010, 2012), Pisani and AbouZahr (2010), Gitter (2013), Pampel and Dallmeier-Tiessen (2014) and Ankeny and Leonelli (2015).

  139. 139.

    Ankeny and Leonelli (2015). See also, Reichman and Uhlir (2003, p. 453 and ff).

  140. 140.

    Ibidem.

  141. 141.

    Leonelli (2013b). The leading case is represented by the Bermuda Principles, developed in 1996 for fostering the sharing of DNA sequences along the Human Genome Project (Collins et al. 2003). Among the latest examples of data sharing policies, see the “Guidelines on Open Access to Scientific Publications and Research Data in Horizon 2020” (http://ec.europa.eu/research/participants/data/ref/h2020/grants_manual/hi/oa_pilot/h2020-hi-oa-pilot-guide_en.pdf) or the NIH “Genomic Data Sharing Policy” (http://gds.nih.gov/03policy2.html). Accessed 18.10.2014.

  142. 142.

    Ankeny and Leonelli (2015). The lack of enforcement and control mechanisms is critically linked by Frischmann, Madison and Strandburg for the sustainment of a knowledge commons (Frischmann et al. 2014, p. 35).

  143. 143.

    Caso and Ducato (2014).

  144. 144.

    Ankeny and Leonelli (2015).

  145. 145.

    Carlson (2011, p. 293).

  146. 146.

    Cambon-Thomsen et al. (2011). It represents the evolution of the BIF, Biobank impact factor proposed by Cambon-Thomsen (2003). See also, De Castro et al. ( 2013).

  147. 147.

    Cambon-Thomsen et al. (2011, p. 503).

  148. 148.

    Caso and Ducato (2014).

  149. 149.

    Ankeny and Leonelli (2015).

  150. 150.

    Only truthful information generates new knowledge, according to Floridi (2010).

  151. 151.

    As defined by Hess and Ostrom (2006) and Suber (2006).

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Caso, R., Ducato, R. (2016). Open Bioinformation in the Life Sciences as a Gatekeeper for Innovation and Development. In: Bellantuono, G., Lara, F. (eds) Law, Development and Innovation. SxI - Springer for Innovation / SxI - Springer per l'Innovazione, vol 13. Springer, Cham. https://doi.org/10.1007/978-3-319-13311-9_7

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  • DOI: https://doi.org/10.1007/978-3-319-13311-9_7

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