Crowd-funded micro-grants for genomics and big data: An actionable idea connecting small (Artisan) science, infrastructure science, and citizen philanthropy

OMICS A Journal of Integrative Biology

Volumn 17, Issue 4, 2013, Pages 161-172

  Özdemir, Vural ^a,b,c   Badr, Kamal F ^d   Dove, Edward S ^c,e   Endrenyi, Laszlo ^f   Geraci, Christy Jo ^g   Hotez, Peter J ^h,i,j   Milius, Djims ^c,k   Neves Pereira, Maria ^l   Pang, Tikki ^m   Rotimi, Charles N ⁿ   Sabra, Ramzi ^d   Sarkissian, Christineh N ^o   Srivastava, Sanjeeva ^p   Tims, Hesther ^q   Zgheib, Nathalie K ^d   Kickbusch, Ilona ^r  

^a Data Enabled Life Sciences Alliance International DELSA Global   (United States)

^b MCGILL UNIVERSITY   (Canada)

^c MCGILL UNIVERSITY   (Canada)

^d AMERICAN UNIVERSITY OF BEIRUT   (Lebanon)

^e University of Toronto ^*  (United States)

^f UNIVERSITY OF TORONTO   (Canada)

^g American University of Iraq   (Iraq)

^h BAYLOR COLLEGE OF MEDICINE   (United States)

ⁱ TEXAS CHILDREN S HOSPITAL   (United States)

^j RICE UNIVERSITY   (United States)

^k UNIVERSITY OF CAPE TOWN   (South Africa)

^l National University of Singapore ^*  (Portugal)

^m NATIONAL UNIVERSITY OF SINGAPORE   (Singapore)

ⁿ NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^o RESEARCH INSTITUTE OF THE MCGILL UNIVERSITY HEALTH CENTRE   (Canada)

^p INDIAN INSTITUTE OF TECHNOLOGY BOMBAY   (India)

^q Independent   (Netherlands)

^r GRADUATE INSTITUTE OF INTERNATIONAL AND DEVELOPMENT STUDIES   (Switzerland)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOMEDICINE; FUNDING; GENOMICS; HUMAN; INCOME; INVESTMENT; POVERTY; PRIORITY JOURNAL; PUBLIC-PRIVATE PARTNERSHIP; SCALE UP;

BIOMEDICAL RESEARCH; FINANCING, ORGANIZED; GENOMICS; HUMANS;

HARNESS;

EID: 84876116808     PISSN: 15362310     EISSN: 15578100     Source Type: Journal    
DOI: 10.1089/omi.2013.0034     Document Type: Article

References (61)

1. Alberts B. (2012). The end of "small science"? Science 337, 1583.
2. Badro DA, Douaihy B, Haber M, et al. (2013). Y-Chromosome and mtDNA genetics reveal significant contrasts in affinities of modern Middle Eastern populations with European and African Populations. PLoS ONE 8, e54616.
3. Brand A. (2012). Public Health Genomics and personalized healthcare: A pipeline from cell to society. Drug Metabol Drug Interact 27, 121-123.
4. Burke W, and Trinidad SB. (2011). Systems medicine and the public's health. Genome Med 3, 47.
5. Clinton HR. (2010). Leading through civilian power: Redefining American diplomacy and development. Foreign Affairs 89, 13-24.
6. Collins FS. (2011). Reengineering translational science: The time is right. Sci Transl Med 3, 90cm17.
7. Dandara C, Adebamowo C, de Vries J, et al. (2012). An idea whose time has come? An African foresight observatory on genomics medicine and data-intensive global science. Curr Pharmacogenom Person Med 10, 7-15.
8. Dove ES, and Özdemir V. (2013a). All the post-genomic worlds a stage: The actors and narrators required for translating pharmacogenomics into public health. Personalized Med (in press).
9. Dove ES, and Özdemir V. (2013b). 'Regular science' is inherently political. EMBO Rep 14, 113.
10. Dove ES, Faraj SA, Kolker E, and Ozdemir V. (2012). Designing a post-genomics knowledge ecosystem to translate pharmacogenomics into public health action. Genome Med 4, 91.
11. Dumbill E. (2013). Making sense of Big Data. Big Data January Preview Issue, BD1-BD2. Available from: http://www .liebertpub.com/mcontent/files/ Big%20Data%20Preview%20 Issue.pdf Accessed February 23, 2013.
12. El-Sibai M, Platt DE, Haber M, et al. (2009). Geographical structure of the Y-chromosomal genetic landscape of the Levant: A coastal-inland contrast. Ann Hum Genet 73, 568-581.
13. ENCODE Project Consortium, Dunham I, Kundaje A, Aldred SF, Collins PJ, Davis CA, et al. (2012). An integrated encyclopedia of DNA elements in the human genome. Nature 489, 57-74.
14. European Commission, Europe. (2011). EU-Wide Targets, 2020. Available from: http://ec.europa.eu/europe2020/targets/eu-targets/index-en.htm. Accessed February 23, 2013.
15. Evans JP, and Khoury MJ. (2013). The arrival of genomic medicine to the clinic is only the beginning of the journey. Genet Med Jan 10. doi: 10.1038/gim.2012.133. [Epub ahead of print]
16. Faraj SA, Kolker E, Bevilacqua L, and Özdemir V. (2012). Collective theranostics and postgenomics entrepreneurship: Rethinking innovations as knowledge ecosystems built by complex collaboration. Expert Rev Mol Diagn 12, 787-790.
17. Friend S. (2011). Thinking outside the genome. The Scientist (October).
18. Guston DH. (2008). Innovation policy: Not just a jumbo shrimp. Nature 454, 940-941.
19. Guston DH, Sarewitz D, and Miller C. (2009). Scientists not immune to partisanship. Science 323, 582.
20. Gwinn M, Grossniklaus DA, Yu W, et al. (2011). Horizon scanning for new genomic tests. Genet Med 13, 161-165.
21. Hand E. (2012). Astronomers set up telescope timeshare. Time swap between observatories points to closer collaboration among large telescopes. Nature News; November 2 doi:10.1038/nature.2012.11725.
22. Harris JR, Burton P, Knoppers BM, et al. (2012). Toward a roadmap in global biobanking for health. Eur J Hum Genet 20, 1105-1111.
23. Havel V. (1999). Address by Czech Republic President Vaclav Havel in acceptance of "Open Society" Prize by the Central European University, Budapest, Hungary, 24 June 1999. http://old.hrad.cz/president/Havel/speeches/ 1999/2406-utc .html (Accessed March 16, 2013).
24. Hennink M, and McFarland DA. (2013). A delicate web: Household changes in health behaviour enabled by microcredit in Burkina Faso. Glob Public Health 8, 144-158.
25. Hey T, Tansley S, and Tolle K. (2009). The Fourth Paradigm: Data-Intensive Scientific Discovery. Redmond, WA: Microsoft Research.
26. Hotez PJ. (2010). Peace through vaccine diplomacy. Science 327, 1301.
27. Hotez PJ (2011a). A handful of 'antipoverty' vaccines exist for neglected diseases, but the world's poorest billion people need more. Health Aff (Millwood) 30, 1080-1087.
28. Hotez PJ. (2011b). Unleashing "civilian power": A new American diplomacy through neglected tropical disease control, elimination, research, and development. PLoS Negl Trop Dis 5, e1134.
29. Hotez PJ, and Gurwith M. (2011) Europe's neglected infections of poverty. Int J Infect Dis 15: e611-619.
30. Hotez PJ, Savioli L, and Fenwick A. (2012a). Neglected tropical diseases of the Middle East and North Africa: Review of their prevalence, distribution, and opportunities for control. PLoS Negl Trop Dis 6: e1475.
31. Hotez PJ, Bottazzi ME, Dumonteil E, et al. (2012b). Texas and Mexico: Sharing a legacy of poverty and neglected tropical diseases. PLoS Negl Trop Dis 6: e1497.
32. Kaye J, Meslin EM, Knoppers BM, et al. (2012). Research priorities. ELSI 2.0 for genomics and society. Science 336, 673-674.
33. Khatib F, Cooper S, Tyka MD, et al. (2011). Algorithm discovery by protein folding game players. Proc Natl Acad Sci USA 108, 18949-18953.
34. Kickbusch I. (1999). Global + local = glocal public health. J Epidemiol Community Health 53, 451-452. (Pubitemid 29358772)
35. Kickbusch I, Silberschmidt G, and Buss P. (2007). Global health diplomacy: The need for new perspectives, strategic approaches and skills in global health. Bull World Health Organ 85, 230-232. (Pubitemid 46397923)
36. Kickbusch I, and Buss P. (2011). Global health diplomacy and peace. Infect Dis Clin North Am 25: 601-610.
37. Kickbusch I, Lister G, Told M, and Drager N. (2013). Global Health Diplomacy. Concepts, Issues, Actors, Instruments, Fora and Cases. New York: Springer.
38. Knoppers BM, and Ozdemir V. (2013). Biogenetics and the concept of humanity. In: Research Project in Humanity. Van Beers B, Corrias L, Werner W. (Ed.) Cambridge: Cambridge University Press (forthcoming).
39. Knoppers BM, Harris JR, Tassé AM, et al. (2011). Towards a data sharing Code of Conduct for international genomic research. Genome Med 3, 46.
40. Kotter JP. (2013). Management Is (Still) Not Leadership. Harvard Business Review Blog. January 9, 2013. Available from: http://blogs.hbr.org/kotter/2013/ 01/management-is-still-not-leader ship.html. Accessed February 9, 2013.
41. Laberge CM, and Knoppers BM. (1992). Rationale for an integrated approach to genetic epidemiology. Bioethics 6, 317-330.
42. Lovgren S. (2006). Nobel Peace Prize Goes to Micro-Loan Pioneers. National Geographic News October 13, 2006. Available from: http://news. nationalgeographic.com/news/2006/10/061013-nobel-peace.html. Accessed February 23, 2013.
43. Oliver S, and Gray J. (2006). A Bibliography of Research Reports about Patients', Clinicians' and Researchers' Priorities for New Research. London: James Lind Alliance.
44. Özdemir V. (2013). OMICS 2.0: A practice turn for 21(st) century science and society. OMICS 17, 1-4.
45. Özdemir V, Joly Y, Kirby E, Avard D, and Knoppers BM. (2013). Beyond ELSIs-Where to from here? From 'regulator' to anticipating and shaping the innovation trajectory in personalized medicine. In: Pharmacogenomics: Challenges and Opportunities in Therapeutic Implementation. Lam YWF, Cavallari L. (Eds). Amsterdam: Elsevier (in press).
46. Özdemir V, and Dove ES. (2012a). Theranostics, the 21st century bioeconomy and 'one health'. Interview by Tikki Pang. Expert Rev Mol Diagn 12: 807-809.
47. ÖzdemirV, andDove ES. (2012b). Direct-to-consumer theranostics, 21st century collective innovation and entrepreneurship. Interview by Barbara Prainsack. Expert Rev Mol Diagn 12: 803-805.
48. Özdemir V, Smith C, Bongiovanni K, et al. (2011). Policy and data-intensive scientific discovery in the beginning of the 21st century. OMICS 15, 221-225.
49. Özdemir V. (2010). Postgenomics medicine, empiricism and ethics of bioethics from cell to society. WorldPharma2010 Copenhagen, Denmark. Available from: http://www.world pharma2010.org/pp//W16.6.pdf. Accessed February 23, 2013.
50. Özdemir V. (2009). What to do when the risk environment is rapidly shifting and heterogeneous? Anticipatory governance and real-time assessment of social risks in multiply marginalized populations can prevent IRB mission creep, ethical inflation or underestimation of risks. Am J Bioeth 9: 65-68.
51. Prainsack B. (2012). Book review: Elias G. Carayannis and David F.J. Campbell, Mode 3 Knowledge Production in Quadruple Helix Innovation Systems: 21st-Century Democracy, Innovation, and Entrepreneurship for Development. Minerva 50, 139-142.
52. Rizkallah RR, Gamal-Eldin S, Saad R, and Aziz RK. (2012). The pharmaco-microbiomicsportal:Adatabase for drug-microbiome interactions. Curr Pharmacogenomics Person Med 10, 195-203.
53. Schofield PN, Eppig J, Huala E, et al. (2010). Research funding. Sustaining the data and bioresource commons. Science 330, 592-593.
54. Scientific American (2013). Citizen Science. Available from http://www.scientificamerican.com/citizen-science/. Accessed February 23, 2013.
55. Suresh S. (2012). Research funding: Global challenges need global solutions. Nature 490, 337-338.
56. Tadmouri, GO, Nair P, Obeid T, Al Ali MT, Al Khaja1 N, and Hamamy HA. (2009). Consanguinity and reproductive health among Arabs. Reprod Health 6: 17. The Graduate Institute, Geneva. (2012).
57. Global Health Diplomacy. Available from: http://graduateinstitute.ch/glo balhealth/ghd.html. Accessed February 23, 2013.
58. The Royal Society. (2010). New frontiers in science diplomacy. London. http://royalsociety.org/policy/publications/2010/newfrontiers-science-diplomacy/ . Accessed February 23, 2013.
59. The Royal Society. (2012). Science as an Open Enterprise, London.
60. Tutton R, and Prainsack B. (2011). Enterprising or altruistic selves? Making up research subjects in genetics research. Sociol Health Illn 33, 1081-1095.
61. von Hippel E. (2013). Open User Innovation. In: The Encyclopedia of Human-Computer Interaction, 2nd Ed. Soegaard, Mads and Dam, Rikke Friis (eds.).Aarhus, Denmark: The Interaction Design Foundation.