Infrastructure tools to support an effective radiation oncology learning health system
Data sharing is the practice of making data used for scholarly research available to other investigators. Many funding agencies, institutions, and publication venues have policies regarding data sharing because transparency and openness are considered by many to be part of the scientific method.[1]
A number of funding agencies and science journals require authors of peer-reviewed papers to share any supplemental information (raw data, statistical methods or source code) necessary to understand, develop or reproduce published research. A great deal of scientific research is not subject to data sharing requirements, and many of these policies have liberal exceptions. In the absence of any binding requirement, data sharing is at the discretion of the scientists themselves. In addition, in certain situations governments[2] and institutions prohibit or severely limit data sharing to protect proprietary interests, national security, and subject/patient/victim confidentiality. Data sharing may also be restricted to protect institutions and scientists from use of data for political purposes.
Data and methods may be requested from an author years after publication. In order to encourage data sharing[3] and prevent the loss or corruption of data, a number of funding agencies and journals established policies on data archiving. Access to publicly archived data is a recent development in the history of science made possible by technological advances in communications and information technology. To take full advantage of modern rapid communication may require consensual agreement on the criteria underlying mutual recognition of respective contributions. Models recognized for improving the timely sharing of data for more effective response to emergent infectious disease threats include the data sharing mechanism introduced by the GISAID Initiative.[4][5]
Despite policies on data sharing and archiving, data withholding still happens. Authors may fail to archive data or they only archive a portion of the data. Failure to archive data alone is not data withholding. When a researcher requests additional information, an author sometimes refuses to provide it.[6] When authors withhold data like this, they run the risk of losing the trust of the science community.[7] A 2022 study identified about 3500 research papers which contained statements that the data was available, but upon request and further seeking the data, found that it was unavailable for 94% of papers.[8]
Data sharing may also indicate the sharing of personal information on a social media platform.
U.S. government policies
Federal law
On August 9, 2007, President Bush signed the America COMPETES Act (or the "America Creating Opportunities to Meaningfully Promote Excellence in Technology, Education, and Science Act") requiring civilian federal agencies to provide guidelines, policies and procedures, to facilitate and optimize the open exchange of data and research between agencies, the public and policymakers. See Section 1009.[9]
NIH data sharing policy
‘The National Institutes of Health (NIH) Grants Policy Statement defines "data" as "recorded information, regardless of the form or medium on which it may be recorded, and includes writings, films, sound recordings, pictorial reproductions, drawings, designs, or other graphic representations, procedural manuals, forms, diagrams, work flow charts, equipment descriptions, data files, data processing or computer programs (software), statistical records, and other research data."’
— Council on Governmental Relations[10]
The NIH Final Statement of Sharing of Research Data says:
‘NIH reaffirms its support for the concept of data sharing. We believe that data sharing is essential for expedited translation of research results into knowledge, products, and procedures to improve human health. The NIH endorses the sharing of final research data to serve these and other important scientific goals. The NIH expects and supports the timely release and sharing of final research data from NIH-supported studies for use by other researchers. ‘NIH recognizes that the investigators who collect the data have a legitimate interest in benefiting from their investment of time and effort. We have therefore revised our definition of "the timely release and sharing" to be no later than the acceptance for publication of the main findings from the final data set. NIH continues to expect that the initial investigators may benefit from first and continuing use but not from prolonged exclusive use.’
NSF Policy from Grant General Conditions
36. Sharing of Findings, Data, and Other Research Products
a. NSF …expects investigators to share with other researchers, at no more than incremental cost and within a reasonable time, the data, samples, physical collections and other supporting materials created or gathered in the course of the work. It also encourages awardees to share software and inventions or otherwise act to make the innovations they embody widely useful and usable.
b. Adjustments and, where essential, exceptions may be allowed to safeguard the rights of individuals and subjects, the validity of results, or the integrity of collections or to accommodate legitimate interests of investigators.
— "National Science Foundation: Grant General Conditions (GC-1)", April 1, 2001 (p. 17).
Office of Research Integrity
Allegations of misconduct in medical research carry severe consequences. The United States Department of Health and Human Services established an office to oversee investigations of allegations of misconduct, including data withholding. The website defines the mission:
"The Office of Research Integrity (ORI) promotes integrity in biomedical and behavioral research supported by the U.S. Public Health Service (PHS) at about 4,000 institutions worldwide. ORI monitors institutional investigations of research misconduct and facilitates the responsible conduct of research (RCR) through educational, preventive, and regulatory activities."
Ideals in data sharing
Some research organizations feel particularly strongly about data sharing. Stanford University's WaveLab has a philosophy about reproducible research and disclosing all algorithms and source code necessary to reproduce the research. In a paper titled "WaveLab and Reproducible Research," the authors describe some of the problems they encountered in trying to reproduce their own research after a period of time. In many cases, it was so difficult they gave up the effort. These experiences are what convinced them of the importance of disclosing source code.[12] The philosophy is described:
- The idea is: An article about computational science in a scientific publication is not the scholarship itself, it is merely advertising of the scholarship. The actual scholarship is the complete software development environment and the complete set of instructions which generated the figures.[13][14]
The Data Observation Network for Earth (DataONE) and Data Conservancy[15] are projects supported by the National Science Foundation to encourage and facilitate data sharing among research scientists and better support meta-analysis. In environmental sciences, the research community is recognizing that major scientific advances involving integration of knowledge in and across fields will require that researchers overcome not only the technological barriers to data sharing but also the historically entrenched institutional and sociological barriers.[16] Dr. Richard J. Hodes, director of the National Institute on Aging has stated, "the old model in which researchers jealously guarded their data is no longer applicable".[17]
The Alliance for Taxpayer Access is a group of organizations that support open access to government sponsored research. The group has expressed a "Statement of Principles" explaining why they believe open access is important.[18] They also list a number of international public access policies.[19] This is no more so than in timely communication of essential information to effectively respond to health emergencies.[20] While public domain archives have been embraced for depositing data, mainly post formal publication, they have failed to encourage rapid data sharing during health emergencies, among them the Ebola[21] and Zika,[22][23] outbreaks. More clearly defined principles are required to recognize the interests of those generating the data while permitting free, unencumbered access to and use of the data (pre-publication) for research and practical application, such as those adopted by the GISAID Initiative to counter emergent threats from influenza.[24][25]
International policies
- Australia
- Austria
- Europe — Commission of European Communities
- Germany
- United Kingdom
- 'Omic Data Sharing — a list of policies of major science funders FAIRsharing.org Catalogue of Data Policies
- India -National Data Sharing and Accessibility Policy – Government of India
Data sharing problems in academia
Genetics
Withholding of data has become so commonplace in genetics that researchers at Massachusetts General Hospital published a journal article on the subject. The study found that "Because they were denied access to data, 28% of geneticists reported that they had been unable to confirm published research."[26]
Psychology
In a 2006 study, it was observed that, of 141 authors of a publication from the American Psychological Association (APA) empirical articles, 103 (73%) did not respond with their data over a 6-month period.[27] In a follow-up study published in 2015, it was found that 246 out of 394 contacted authors of papers in APA journals did not share their data upon request (62%).[28]
Archaeology
A 2018 study reported on study of a random sample of 48 articles published during February–May 2017 in the Journal of Archaeological Science which found openly available raw data for 18 papers (53%), with compositional and dating data being the most frequently shared types. The same study also emailed authors of articles on experiments with stone artifacts that were published during 2009 and 2015 to request data relating to the publications. They contacted the authors of 23 articles and received 15 replies, resulting in a 70% response rate. They received five responses that included data files, giving an overall sharing rate of 20%.[29]
Scientists in training
A study of scientists in training indicated many had already experienced data withholding.[30] This study has given rise to the fear the future generation of scientists will not abide by the established practices.
Differing approaches in different fields
Requirements for data sharing are more commonly imposed by institutions, funding agencies, and publication venues in the medical and biological sciences than in the physical sciences. Requirements vary widely regarding whether data must be shared at all, with whom the data must be shared, and who must bear the expense of data sharing.
Funding agencies such as the NIH and NSF tend to require greater sharing of data, but even these requirements tend to acknowledge the concerns of patient confidentiality, costs incurred in sharing data, and the legitimacy of the request.[31] Private interests and public agencies with national security interests (defense and law enforcement) often discourage sharing of data and methods through non-disclosure agreements.
Data sharing poses specific challenges in participatory monitoring initiatives, for example where forest communities collect data on local social and environmental conditions. In this case, a rights-based approach to the development of data-sharing protocols can be based on principles of free, prior and informed consent, and prioritise the protection of the rights of those who generated the data, and/or those potentially affected by data-sharing.[32]
See also
- Data archive
- Data dissemination
- Data privacy
- Data publishing
- Data citation
- FAIR data
- File sharing
- Information sharing
- Knowledge sharing
- Open data
- Registry of Research Data Repositories
References
- ^ "A Global Health Epidemic Is A Ticking Time Bomb - But Virus Databases Can And Are Helping To Save Lives". HuffPost UK. 12 January 2017. Retrieved 2017-09-06.
- ^ "A shot of transparency". The Economist. 2006-08-10. ISSN 0013-0613. Retrieved 2017-09-06.
- ^ "How to encourage the right behaviour". Nature. 416 (6876): 1. 2002. Bibcode:2002Natur.416R...1.. doi:10.1038/416001b. PMID 11882850.
- ^ McCauley, John W. (2017-02-23). "Viruses: Model to accelerate epidemic responses". Nature. 542 (7642): 414. Bibcode:2017Natur.542..414M. doi:10.1038/542414b. PMID 28230113.
- ^ "No Free Lunch, G20 Health Ministers Find At First Meeting". Intellectual Property Watch. 2017-05-20. Retrieved 2017-09-06.
- ^ Savage CJ, Vickers AJ (2009). "Empirical Study of Data Sharing by Authors Publishing in PLoS Journals". PLOS ONE. 4 (9): e7078. Bibcode:2009PLoSO...4.7078S. doi:10.1371/journal.pone.0007078. PMC 2739314. PMID 19763261.
- ^ "Publication and Openness," chapter from "On Being A Scientist: Responsible Conduct in Research", National Academy of Sciences.
- ^ Gabelica, Mirko; Bojčić, Ružica; Puljak, Livia (May 2022). "Many researchers were not compliant with their published data sharing statement: mixed-methods study". Journal of Clinical Epidemiology. 150: 33–41. doi:10.1016/j.jclinepi.2022.05.019. PMID 35654271. S2CID 249213574.
- ^ "America COMPETES Act
- ^ "Access to and retention of research data Archived 2007-05-26 at the Wayback Machine: Rights and responsibilities", p. 5. Council on Governmental Relations, March 2006.
- ^ "NIH Data Sharing Policy."
- ^ WaveLab and Reproducible Research by Jonathan B. Buckheit and David L. Donoho
- ^ WaveLab850 website
- ^ Rimmer, Matthew (2005-09-01). "Japonica Rice: Intellectual Property, Scientific Publishing and Data-sharing". Prometheus. 23 (3): 325–347. doi:10.1080/08109020500235180. ISSN 0810-9028. S2CID 153908749.
- ^ "Data Conservancy | Data Conservancy is devoted to developing institutional solutions for the challenges of data collection, preservation and re-use".
- ^ Reichman O.J.; Jones M.B.; Schildhauer M.P. (2011). "Challenges and Opportunities of Open Data in Ecology". Science. 331 (6018): 703–705. Bibcode:2011Sci...331..703R. doi:10.1126/science.1197962. PMID 21311007. S2CID 22686503.
- ^ Kolata, Gina (3 April 2011). "Vast Gene Study Yields Insights on Alzheimer's (Published 2011)". The New York Times. Archived from the original on 2021-06-09.
- ^ The Alliance for Taxpayer Access website
- ^ "Worldwide momentum for public access to publicly funded research". Archived from the original on 2007-09-27. Retrieved 2007-09-07.
- ^ Shu, Yuelong; McCauley, John (2017). "GISAID: Global initiative on sharing all influenza data – from vision to reality". Eurosurveillance. 22 (13). doi:10.2807/1560-7917.es.2017.22.13.30494. PMC 5388101. PMID 28382917.
- ^ Yozwiak, Nathan L.; Schaffner, Stephen F.; Sabeti, Pardis C. (2015-02-26). "Data sharing: Make outbreak research open access". Nature. 518 (7540): 477–479. Bibcode:2015Natur.518..477Y. doi:10.1038/518477a. PMID 25719649.
- ^ "When research goes off the rails". The Hindu. Retrieved 2017-09-06.
- ^ "Benefits of sharing". Nature. 530 (7589): 129. 2016-02-11. Bibcode:2016Natur.530Q.129.. doi:10.1038/530129a. PMID 26863943.
- ^ Elbe, Stefan; Buckland-Merrett, Gemma (2017-01-01). "Data, disease and diplomacy: GISAID's innovative contribution to global health". Global Challenges. 1 (1): 33–46. Bibcode:2017GloCh...1...33E. doi:10.1002/gch2.1018. ISSN 2056-6646. PMC 6607375. PMID 31565258.
- ^ "CDC Races to Create a Vaccine for China's Latest Bird Flu Strain". Bloomberg.com. 2013-04-10. Retrieved 2017-09-06.
- ^ Campbell EG, Clarridge BR, Gokhale M, et al. (2002). "Data withholding in academic genetics: evidence from a national survey". JAMA. 287 (4): 473–80. doi:10.1001/jama.287.4.473. PMID 11798369.
- ^ Wicherts, J. M.; Borsboom, D.; Kats, J.; Molenaar, D. (2006). "The poor availability of psychological research data for reanalysis". American Psychologist. 61 (7): 726–728. doi:10.1037/0003-066X.61.7.726. PMID 17032082.
- ^ Vanpaemel, W.; Vermorgen, M.; Deriemaecker, L.; Storms, G. (2015). "Are we wasting a good crisis? The availability of psychological research data after the storm" (PDF). Collabra. 1 (1): 1–5. doi:10.1525/collabra.13.
- ^ Marwick, Ben; Birch, Suzanne E. Pilaar (5 April 2018). "A Standard for the Scholarly Citation of Archaeological Data as an Incentive to Data Sharing". Advances in Archaeological Practice. 6 (2): 125–143. doi:10.1017/aap.2018.3.
- ^ Vogeli C, Yucel R, Bendavid E, et al. (February 2006). "Data withholding and the next generation of scientists: results of a national survey". Acad Med. 81 (2): 128–36. doi:10.1097/00001888-200602000-00007. PMID 16436573.
- ^ "NIH Data Sharing Policy and Implementation Guidance". grants.nih.gov. Retrieved 2021-04-09.
- ^ D Sabogal. 2015. Data sharing in community-based forest monitoring: lessons from Guyana. Global Canopy Programme. http://forestcompass.org/how/resources/data-sharing-community-based-forest-monitoring-lessons-guyana
Literature
Committee on Issues in the Transborder Flow of Scientific Data, National Research Council (1997). Bits of Power: Issues in Global Access to Scientific Data. Washington, D.C.: National Academy Press. doi:10.17226/5504. ISBN 978-0-309-05635-9. — discusses the international exchange of data in the natural sciences.
External links
- "The Selfish Gene Archived 2008-08-05 at the Wayback Machine: Data Sharing and Withholding in Academic Genetics" by Eric Campbell and David Blumenthal published May 31, 2002.
- Data sharing and data archiving ― American Psychological Association
- The Public Domain of Digital Research Data
- WaveLab and Reproducible Research by Jonathan B. Buckheit and David L. Donoho of Stanford University
- The Role of Data and Program Code Archives in the Future of Economic Research published by The Federal Reserve Bank of St. Louis
- Ecological Society of America data sharing and archiving initiative Archived 2008-03-10 at the Wayback Machine
- FAIRsharing.org A website on data sharing and data policies in biology
- UK Data Archive: Manage and Share data
- Data Management Plan Resources and Examples - Inter-university Consortium for Political and Social Research.
- DataONE
- Nature Scientific Data: open-access, online-only publication for descriptions of scientifically valuable datasets.
Notes
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