Excluding the poor from accessing biomedical literature: A rights violation that impedes global health

Health and Human Rights

Volumn 10, Issue 1, 2008, Pages 21-42

  Yamey, Gavin ^a  

^a United States of America and Cambridge   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

HEALTH CARE; HEALTH WORKER; HUMAN RIGHTS; LOW INCOME POPULATION; PUBLIC ACCESS; PUBLIC HEALTH; PUBLISHING; TEXTBOOK;

ATTITUDE TO HEALTH; ECONOMICS; ETHICS; HEALTH; HEALTH CARE PERSONNEL; HUMAN; HUMAN RIGHTS; INFORMATION DISSEMINATION; MEDICAL SOCIOLOGY; POVERTY; PROCEDURES; PUBLIC HEALTH SERVICE; PUBLICATION; SUPPLY AND DISTRIBUTION;

GLOBAL HEALTH; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH PERSONNEL; HUMAN RIGHTS; HUMANS; INFORMATION DISSEMINATION; PERIODICALS AS TOPIC; POVERTY; PUBLIC HEALTH ADMINISTRATION; SOCIOLOGY, MEDICAL;

EID: 57049173087     PISSN: 10790969     EISSN: None     Source Type: Journal    
DOI: 10.2307/20460085     Document Type: Article

References (154)

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55. Langer et al. (see note 41).
56. Universal Declaration of Human Rights (see note 2);
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59. see also note 2.
60. Willinsky (see note 15): pp. 143-154.
61. Ibid.
62. Universal Declaration of Human Rights (see note 2).
63. UNESCO and the International Council of Scientific Unions, World Conference on Science; Declaration on Science and the Use of Scientific Knowledge (July 1, 1999). Available at http://www.unesco.org/science/wcs/ eng/declaration_e.htm.
64. The UN World Summit on the Information Society. Available at http://www.itu.int/wsis/index.html.
65. Declaration of Principles, Building the Information Society: A Global Challenge in the new Millennium (December 12, 2003) ("Geneva Declaration of Principles"). Available at http://www.itu.int/wsis/ docs/geneva/official/dop.html.
66. Office of the UN High Commissioner for Human Rights, Background Note on the Information Society and Human Rights (October 2003). Available at www.unhchr.ch/pdf/noteinfsociety.pdf.
67. Report of the UN Special Rapporteur on Freedom of Opinion and Expression, UN Doc. E/CN.4/32 (1995), para. 35, quoted in Chapman (see note 49).
68. J. Boyle, "A Politics of Intellectual Property: Environmentalism for the Net?" Duke Law Journal 47 (1997): pp. 87-116. Available at http://www.law.duke.edu/boylesite/intprop.htm.
69. For a discussion of local, regional, and international human rights declarations that discuss access to knowledge, see D. Ovett, Framing Access to Knowledge in Human Rights Terms, presented on panel, Framing Access to Knowledge, at the Yale ISP Access to Knowledge conference (New Haven, CT, USA, April 21-23, 2006). Available at: www.3dthree.org/pdf_3D/DOvett_FramingA2K(April06).pdf.
70. American Convention on Human Rights, O.A.S.Treaty Series No. 36 (1969). Available at http://www1.umn.edu/humanrts/oasinstr/zoas-3con.htm
71. European Convention on Human Rights, European Treaty Series No. 5 (1950). Available at http://www.hri.org/docs/ECHR50.html.
72. Declaration of Principles on Freedom of Expression in Africa (October 17-23, 2002). Available at http://www1.umn.edu/humanrts/achpr/ expressionfreedomdec.html.
73. Association for Progressive Communications. Available at http://rights.apc.org/charter.shtml.
74. Ibid.
75. Ramsay (see note 27).
76. The alliance includes organizations such as Universities Allied for Essential Medicines, the Drugs for Neglected Diseases Initiative, Médecins sans Frontières (through its Access to Essential Medicines Campaign), the Consumer Project on Technology, and Health Action International.
77. A. Jack, "WHO Members Urged to Sign Kyoto-Style Medical Treaty," Financial Times (February 25, 2005). Available at http://www.ft.com/cms/s/67e10ff8-86d4-11d9-8075-00000e2511c8.html.
78. Medical Research and Development Treaty (2005). Available at http://www.cptech.org/workingdrafts/rndtreaty.html. This site provides background information on the development of the treaty, in addition to a link to the treaty text. The most recent draft version of the treaty document (from February 7, 2005) can be accessed directly at http://www.cptech.org/workingdrafts/rndtreaty4.pdf.
79. Geneva Declaration on the Future of the World Intellectual Property Organization (2004). Available at http://www.cptech.org/ip/wipo/ futureofwipo-declaration.html.
80. "In Praise of...Open Access," The Guardian (July 1, 2006). Available at http://education.guardian.co.uk/elearning/comment/ 0,,1810243,00.html.
81. Peter Suber has summarized university actions against high journal prices and for open access to the literature at http://www.earlham.edu/ ~peters/fos/lists.htm#actions.
82. Delamothe and Smith (see note 8).
83. Public Library of Science (PLoS), "Open Letter." Available at http://www.plos.org/support/openletter.shtml.
84. Peter Suber has summarized "journal declarations of independence" at http://www.earlham.edu/~peters/fos/ lists.htm#declarations.
85. The Scholarly Publishing & Academic Resources Coalition (SPARC) and The Triangle Research Libraries Network (TRLN), "A Guide to Creating Community-Controlled Science Journals." Declaring Independence. Available at http://www.arl.org/sparc/DI/ Declaring_Independence_Selection.pdf.
86. Delamothe and Smith (see note 8).
87. Barbour et al. (see note 1).
88. The Wellcome Trust, "New Report Reveals Open Access Could Reduce Cost of Scientific Publishing by up to 30 Per Cent." Available at http://www.wellcome.ac.uk/doc_WTD002874.html.
89. SQW Limited (see note 17).
90. The Creative Commons Attribution License is available at http://creativecommons.org/licenses/by/2.5/.
91. J.M. Velterop, "Guide to Open Access Publishing and Scholarly Societies," Open Society Institute, (July 2005). Available at http://www.soros.org/openaccess/scholarly_guide.shtml.
92. B. Auvert, D. Taljaard, E. Lagarde, J. Sobngwi-Tambekou, R. Sitta, and A. Puren, "Randomized, Controlled Intervention Trial of Male Circumcision for Reduction of HIV Infection Risk: The ANRS 1265 Trial," PLoS Medicine 2/11 (2005): p. e298.
93. The letters from readers critiquing this study are freely available at PLoS Medicine, http://medicine.plosjournals.org/perlserv/ ?request=readresponse&doi=10.1371/journal.pmed.0020298. At the time of this writing, there were 21 "Letters to the Editor," including those from African researchers and from international health and development agencies.
94. G. Eysenbach, "Citation Advantage of Open Access Articles," PLoS Biology 4/5 (2006): p. e157;
95. S. Lawrence, "Free Online Availability Substantially Increases a Paper's Impact," Nature 411 (2001): p. 521;
96. S. Harnad and T. Brody, "Comparing the Impact of Open Access (OA) vs. Non-OA Articles in the Same Journals," D-Lib Magazine 10 (2004). Available at http://www.dlib.org/dlib/june04/harnad/ 06harnad.html
97. K. Antelman, "Do Open Access Articles Have a Greater Research Impact?" College and Research Libraries 65 (2004): pp. 372-382;
98. Steve Hitchcock's bibliography of all the studies showing that open access articles are cited more frequently is available at The Open Citation Project at http://opcit.eprints.org/oacitation-biblio.html
99. D. Prosser, "The Next Information Revolution - How Open Access Will Transform Scholarly Communications." Available at http://eprints.rclis.org/archive/0003917/02/IYLIM_chapter.pdf
100. Ofori-Adjei et al. (see note 47).
101. A survey of six leading "international" medical journals, for example, found that only 6.5% of papers were authored by researchers from the developing world: A. Sumathipala, S. Siribaddana, and V. Patel, "Under-representation of Developing Countries in the Research Literature: Ethical Issues Arising from a Survey of Five Leading Medical Journals," BMC (BioMed Central) Medical Ethics 5 (2004): p. 5
102. The PLoS Medicine Editors, "Access for Contributors: PLoS Expands Options for Publication of Research and Comment," PLoS Medicine 3/9 (2006): p. e416.
103. R. Short, "Peer Review Will Become 'The Job of the Many, Not the Select Few,'" British Medical Journal 334 (2007): p. 330.
104. D. Giustini, "How Web 2.0 is Changing Medicine," British Medical Journal 333 (2006): pp. 1283-1284.
105. M. Walport and R. Kiley, "Open Access, UK PubMed Central and the Wellcome Trust," Journal of the Royal Society of Medicine 99 (2006): pp. 438-439.
106. Willinsky (see note 15): pp. 111-125.
107. Budapest Open Access Initiative. Available at http://www.soros.org/ openaccess/.
108. The updated list of signatories is available at http://www.soros.org/ openaccess/view.cfm.
109. For example, on March 1, 2004, John Jarvis, Managing Director of the publishing company Wiley Europe, gave oral evidence to a UK parliamentary enquiry on scientific publishing. In discussing open access to the biomedical literature, Jarvis said: "Without being pejorative or elitist, I think that is an issue that we should think about very, very carefully, because there are very few members of the public, and very few people in this room, who would want to read some of this scientific information, and in fact draw wrong conclusions from it [...] Speak to people in the medical profession, and they will say the last thing they want are people who may have illnesses reading this information, marching into surgeries and asking things. We need to be careful with this very, very high-level information." Available at http://www.publications.parliament.uk/pa/cm200304/cmselect/cmsctech/ uc399-i/uc39902.htm.
110. S. Terry, presentation at the conference, In the Public Interest: Open Access and Public Policy 2005; ACRL/SPARC Forum at ALA Midwinter (Boston, MA, January 15, 2005). Available at http://www.arl.org/sparc/ meetings/ala05mw/2005MW%20Forum%20_report.pdf.
111. See note 22.
112. P. Suber, "Happy Birthday, BOAI" (February 14, 2007). Available at http://www.earlham.edu/~peters/fos/ 2007_02_11_fosblogarchive.html#117146494448761111.
113. See note 90.
114. Berlin Declaration on Open Access to Knowledge in the Sciences and Humanities. Available at http://oa.mpg.de/openaccess-berlin/ berlindeclaration.html.
115. The updated list of signatories is available at http://oa.mpg.de/ openaccess-berlin/signatories.html.
116. Salvador Declaration on Open Access: The Developing World Perspective (2005). Available at www.icml9.org/ channel.php?lang=en&channel=91&content=439.
117. Wellcome Trust announces open access plans (2005). Available at http://www.wellcome.ac.uk/News/News-archive/Browse-by-date/2005/News/ WTX025197.htm.
118. NIH Public Access, Policy on Enhancing Public Access to Archived Publications Resulting from NIH-Funded Research. Available at http://publicaccess.nih.gov.
119. The Alliance for Taxpayer Access, "Mandate for Public Access to NIH-Funded Research Poised to Become Law" (October 24, 2007). Available at http://www.taxpayeraccess.org/media/release07-1024.html.
120. Federal Research Public Access Act. Available at http://www.arl.org/ sparc/resources/frpaa.html.
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122. Harris Poll, "Most Americans Back Online Access To Federally Funded Research," Wall Street Journal (May 31, 2006). Available at http://www.earlham.edu/~peters/fos/ 2006_05_28_fosblogarchive.html#114910267975298843
123. see also note 22.
124. Peter Suber has summarized all the actions taken by research funding bodies and universities in 2006 toward promoting open access at http://www.earlham.edu/~peters/fos/newsletter/01-02-07.htm#2006.
125. For example, the commercial publisher Springer has recently launched a program called Open Choice - the publisher will make an author's journal article freely available under the CCAL provided the research funder covers the costs of publication (known as the "article processing charge"). Available at http://www.springer.com/dal/home/ open+choice?SGWID=1-40359-12-115382-0&teaserId=55557&CENTER_ID= 115382.
126. P. Suber, "Open Access, Impact, and Demand," British Medical Journal 330 (2005): pp. 1097-1098.
127. Health InterNetwork Access to Research Initiative (Hinari). Available at http://www.who.int/hinari/en/.
128. UN Millennium Project, Task Force on Science, Technology and Innovation, Innovation: Applying Knowledge in Development (London: Earthscan Publishing, 2005). Available at http://www.unmillenniumproject.org/ documents/Science-complete.pdf.
129. Declaration of Principles (see note 55).
130. B. Wysocki, Jr., "Publishers Oppose Plan for Free Access to Scientific Research," Wall Street Journal (October 28, 2004): p. B1.
131. J. Giles, "PR's 'Pit Bull' Takes on Open Access," Nature 445 (2007): pp. 347-348, doi:10.1038/445347a; published online January 24, 2007.
132. Ibid.
133. Partnership for Research Integrity in Science and Medicine (PRISM). Available at http://www.prismcoalition.org/.
134. J. Howard, "Anti-open-access Effort by Publishing Group Loses Another University Press," The Chronicle of Higher Education (October 4, 2007). Available at http://chronicle.com/news/ index.php?id=3182.
135. Washington DC Principles for Free Access to Science, "Nonprofit Publishers Oppose Government Mandates for Scientific Publishing," (February 20, 2007). Available at http://www.dcprinciples.org/press/ 2.htm.
136. P. Suber, "DC Principles Coalition Still Opposes an OA Mandate." Available at http://www.earlham.edu/~peters/fos/ 2007_02_18_fosblogarchive.html#117202895951705271.
137. J. Hoey, "An Editorial Dissection: A Book Review of 'The Trouble with Medical Journals,'" Open Medicine 1/3 (2007): pp. 129-130. Available at http://www.openmedicine.ca/article/view/73/67.
138. Giles (see note 112).
139. Kranich (see note 23).
140. T. Jefferson, "To Isaac McPherson," August 13, 1813, in H. A. Washington (ed), Writings of Thomas Jefferson, Vol. 6 (Washington, DC: Taylor & Maury, 1853-1854): pp. 180-181.
141. C. Hess and E. Ostrom, "Introduction: An Overview of the Knowledge Commons," in Hess and Ostrom (see note 7).
142. D. Bollier, "Growth of the Commons Paradigm" (see note 7).
143. Delamothe and Smith (see note 8).
144. J. Stiglitz, "Scrooge and Intellectual Property Rights," British Medical Journal 333 (2006): pp. 1279-1280.
145. The Science Commons. Available at http://sciencecommons.org/.
146. BiOS. Available at http://www.bios.net/daisy/bios/home.html.
147. Drugs for Neglected Diseases initiative (DNDi). Available at http://www.dndi.org.
148. Conservation Commons. Available at http://www.conservationcommons.org/.
149. EconPort. Available at http://www.econport.org/econport/ request?page=web_home
150. see also J. C. Cox and J. T. Swarthout, "EconPort: Creating and Maintaining a Knowledge Commons," in Hess and Ostrom (see note 7).
151. P. Levine, "Collective Action, Civic Engagement, and the Knowledge Commons," in Hess and Ostrom (see note 7).
152. Ibid.
153. Ibid.
154. D. Gordon, Monitoring the Right to Health, presented at "Exclusion and the Right to Health: the Role of Health Professionals," IFHHRO Conference (Lima, Peru, October 13, 2006). Available at http://www.edhucasalud.org/documents/DAVE_GORDON_PGS.pdf.