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Policies regarding public availability of published research data in pediatrics journals

  • Rafael Aleixandre-BenaventEmail author
  • Antonia Ferrer Sapena
  • Silvia Coronado Ferrer
  • Fernanda Peset
  • Alicia García García
Article

Abstract

Sharing research data is an increasingly necessary requirement for the advancement of science. The goal of this paper is twofold. First, to analyze the policies on openness in sharing scientific research data in a sample of pediatric journals and to determine whether there is any correlation with a journal’s impact factor; second, to determine if there have been changes in the opening policies from 2013 to 2016. Journals included in the Pediatrics area of the Journal Citation Reports were used for the analysis, with reference to the instructions to authors published on the journals’ websites. These instructions were revised in 2012 and in 2016. The majority of pediatric journals advise authors to deposit their data but do not provide specific instructions on how to do so. No correlation was found between the value of the impact factor of the journals and their open data policies. Deposit policies vary among publishing entities, with predominantly PubMed Central and repositories of clinical trials among those suggested for data deposit. Most pediatric journals recommend that authors deposit their data in a repository, but they do not provide clear instructions for doing so. No correlation was found between the value of a journal’s impact factor and the availability of open data. Policies regarding deposit in specific repositories vary among publishing entities, with PubMed Central and various clinical trial repositories being those primarily suggested for deposit.

Keywords

Journals policies Data sharing Raw research data Re-use Pediatric journals 

Notes

Acknowledgment

This work benefited from assistance by the National R + D+I of the Ministry of Economy and Competitiveness of the Spanish Government (Projects: CSO2012-39632-C02-01 and CSO2015-65594-C2-2-R) and the 2015-Networks of Excellence Call (Project CSO2015-71867-REDT).

References

  1. Aleixandre-Benavent, R., Vidal-Infer, A., Alonso Arroyo, A., Valderrama Zurián, J. C., Bueno Cañigral, F., & Ferrer, Sapena A. (2014). Public availability of published research data in substance abuse journals. International Journal of Drug Policy, 25(6), 1143–1146.CrossRefGoogle Scholar
  2. Alsheikh-Ali, A. A., Qureshi, W., Al-Mallah, M. H., & Ioannidis, J. P. A. (2011). Public availability of published research data in high-impact journals. PLoS ONE, 6(9), e24357.CrossRefGoogle Scholar
  3. Anderson, B. J., & Merry, A. F. (2009). Data sharing for pharmacokinetic studies. Paediatric Anaesthesia, 19(10), 1005–1010.CrossRefGoogle Scholar
  4. Bachrach, C. A., & King, R. B. (2004). Data sharing and duplication. Is there a problem? Archives of Pediatrics and Adolescent Medicine, 158, 931–932.CrossRefGoogle Scholar
  5. Brothers, K. B. (2011). Biobanking in pediatrics: The human nonsubjects approach. Personalized Medicine, 8(1), 79.CrossRefGoogle Scholar
  6. Burstein, M. D., Robinson, J. O., Hilsenbeck, S. G., McGuire, A. L., & Lau, C. C. (2014). Pediatric data sharing in genomic research: Attitudes and preferences of parents. Pediatrics, 133(4), 690–697.CrossRefGoogle Scholar
  7. Davis, P. M. (2013). Public accessibility of biomedical articles from PubMed Central reduces journal readership–retrospective cohort analysis. The FASEB Journal, 27(7), 2536–2541.CrossRefGoogle Scholar
  8. Evangelou, E., Trikalinos, T. A., & Loannidis, J. P. (2005). Unavailability of online supplementary scientific information from articles published in major journals. The FASEB Journal, 19, 1943–1944.CrossRefGoogle Scholar
  9. Gotzsche, P. C. (2012). Strengthening and opening up health research by sharing our raw data. Circulation: Cardiovascular Quality and Outcomes, 5, 236–237.Google Scholar
  10. Gurwitz, D., Fortier, I., Lunshof, J. E., & Knoppers, B. M. (2009). Children and population biobanks. Science, 325(5942), 818–819.CrossRefGoogle Scholar
  11. Guttmacher, A. E., Nabel, E. G., & Collins, F. S. (2009). Why data-sharing policies matter. Proceedings of the National Academy of Sciences of the United States of America, 106(40), 16894.CrossRefGoogle Scholar
  12. Gymrek, M., & Farjoun, Y. (2016). Recommendations for open data science. Gigascience, 5, 22.CrossRefGoogle Scholar
  13. Hochedlinger, N., Nitzlnader, M., Falgenhauer, M., Welte, S., Hayn, D., Koumakis, L., et al. (2015). Standardized data sharing in a paediatric oncology research network -a proof-of-concept study. Stud Health Technol Inform, 212, 27–34.Google Scholar
  14. Hull, S. C., Sharp, R. R., Botkin, J. R., Brown, M., Sugarman, H. M., et al. (2008). Patients’ views on identifiability of samples and informed consent for genetic research. American Journal of Bioethics, 8(10), 62–70.CrossRefGoogle Scholar
  15. Ince, I., de Wildt, S. N., Tibboel, D., Danhof, M., & Knibbe, C. A. (2009). Tailor-made drugtreatment for children: Creation of an infrastructure for data-sharing and population PK-PD modeling. Drug Discovery Today, 14(5–6), 316–320.CrossRefGoogle Scholar
  16. Kaufman, D. J., Murphy-Bollinger, J., Scott, J., & Hudson, K. L. (2009). Public opinion about the importance of privacy in biobank research. American Journal of Human Genetics, 85(5), 643–654.CrossRefGoogle Scholar
  17. Kaye, J. (2012). The tension between data sharing and the protection of privacy ingenomics research. Annual Review of Genomics and Human Genetics, 13, 415–431.CrossRefGoogle Scholar
  18. Longstaff, H., Khramova, V., Portales-Casamar, E., & Illes, J. (2015). Sharing with more caring: Coordinating and improving the ethical governance of data and biomaterials obtained from children. PLoS ONE, 10(7), e0130527.CrossRefGoogle Scholar
  19. Marks, W., Bailey, L., & Sanger, T. D. (2017). PEDiDBS: The pediatric international deep brain stimulation registry project. European Journal of Paediatric Neurology, 21(1), 218–222.CrossRefGoogle Scholar
  20. McGuire, A. L., Oliver, J. M., Slashinski, M. J., Graves, J. L., Wang, T., Kelly, P. A., et al. (2011). To share or not to share: A randomized trial of consent for data sharing in genome research. Genetics in Medicine, 13(11), 948–955.CrossRefGoogle Scholar
  21. Mennes, M., Biswal, B. B., Castellanos, F. X., & Milham, M. P. (2013). Making data sharing work: The FCP/INDI experience. Neuroimage, 82, 683–691.CrossRefGoogle Scholar
  22. Miller, A. C., Odenkirchen, J., Duhaime, A. C., & Hicks, R. (2012). Common data elements for research on traumatic brain injury: Pediatric considerations. Journal of Neurotrauma, 29(4), 634–638.CrossRefGoogle Scholar
  23. Mohammad, S. S., & Perez, Duenas B. (2017). A framework for paediatric neuromodulation—recognising the challenges and a platform for data sharing. European Journal of Paediatric Neurology, 21, 18–19.CrossRefGoogle Scholar
  24. Murray-Rust, P. (2008). Open data in science. Available from Nature Precedings. http://hdl.handle.net/10101/npre.2008.1526.1.
  25. Pisani, E., Aaby, P., Breugelmans, J. G., Carr, D., Groves, T., Helinski, M., et al. (2016). Beyond open data: Realising the health benefits of sharing data. BMJ, 355, i5295.CrossRefGoogle Scholar
  26. Pisani, E., & AbouZahr, C. (2010). Sharing health data: Good intentions are not enough. Bulletin of the World Health Organization, 88(6), 462–466.CrossRefGoogle Scholar
  27. Rahimzadeh, V., Schickhardt, C., Knoppers, B. M., Sénécal, K., Vears, D. F., Fernandez, C. V., et al. (2018). Key implications of data sharing in pediatric genomics. JAMA Pediatrics, 172(5), 476–481.CrossRefGoogle Scholar
  28. Sieber, J. E. (2005). Ethics of sharing scientific and technological data: A heuristic for coping with complexity and uncertainty. Data Science Journal, 4, 165–170.CrossRefGoogle Scholar
  29. Spertus, J. A. (2012). The double-edged sword of open access to research data. Circulation: Cardiovascular Quality and Outcomes, 5, 143–144.Google Scholar
  30. Tenopir, C., Allard, S., Douglass, K., Aydinoglu, A. U., Wu, L., Read, E., et al. (2011). Data sharing by scientists: Practices and perceptions. PLoS ONE, 6(6), e21101.CrossRefGoogle Scholar
  31. Tomasi, D., & Volkow, N. D. (2012). Abnormal functional connectivity in children with attention-deficit/hyperactivity disorder. Biological Psychiatry, 71, 443–450.CrossRefGoogle Scholar
  32. Vidal-Infer, A., Tarazona, B., Alonso-Arroyo, A., & Aleixandre-Benavent, R. (2018). Public availability of research data in dentistry journals indexed in Journal Citation Reports. Clinical Oral Investigations, 22(1), 275–280.CrossRefGoogle Scholar

Copyright information

© Akadémiai Kiadó, Budapest, Hungary 2019

Authors and Affiliations

  • Rafael Aleixandre-Benavent
    • 1
    • 2
    Email author
  • Antonia Ferrer Sapena
    • 3
  • Silvia Coronado Ferrer
    • 4
  • Fernanda Peset
    • 3
  • Alicia García García
    • 1
  1. 1.UISYS, Joint Research Unit (CSIC – Universitat de València)ValenciaSpain
  2. 2.Ingenio (CSIC-Universitat Politècnica de València)ValenciaSpain
  3. 3.DCADHAUniversitat Politècnica de ValènciaValenciaSpain
  4. 4.Pediatric DepartmentHospital de la RiberaAlzira, ValenciaSpain

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