Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age (2009) / Chapter Skim
Currently Skimming:
3 Ensuring Access to Research Data
3 Ensuring Access to Research Data
Pages 59-94
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 59... ...
Open access to research data from public funding should be easy, timely, userfriendly and preferably Internet-based." As the National Research Council's "OECD Principles for Access to Research Data from Public Funding," Available at http://www. oecd.org/dataoecd/9/61/38500813.pdf.
|
From page 60... ...
In the case of the human genome, for example, the desire by funding agencies, researchers, and the general public for public access to research data led the genomics research com munity to develop an ethic of unrestricted access. This ethic was formally adopted as the "Bermuda statement" in February 1996: All human genomic information produced at large-scale sequencing centres should be freely available and in the public domain, in order to encourage research and development and to maximize its benefit to society.b At the same time, other forces have had the effect of restricting access to genomics data, including: • The need to protect patient or individual privacy; • The principal investigator's desire to maintain research advantage; • The danger of misuse (e.g., of virus sequences)
|
From page 61... ...
Codes of conduct in a research community, whether explicit or tacit, can exert a powerful influence on researchers to make data accessible. Advances in information technology -- for instance, the advent of grid computing and cloud computing -- will continue to transform the environment for In grid computing, distributed computing resources link experimental apparatus, processing, analysis, and storage; cloud computing involves large-scale, data-intensive, Internet-hosted applications and related infrastructure.
|
From page 62... ...
Endorsed by the OECD Council on December 14, 2006, the "OECD Principles and Guidelines for Access to Research Data from Public Funding" serve as objectives for each member country to achieve given its own legal, cultural, economic, and social context. The Principles and Guidelines cover 13 broad areas: Openness Flexibility Transparency Legal conformity Protection of intellectual property Formal responsibility Professionalism Interoperability Quality Security Efficiency Accountability Sustainability The Principles and Guidelines call "for a flexible approach to data access" under a default principle of openness and recognize "that one size does not fit all." They also state that "Whatever differences there may be between practices of, and policies on, data sharing, and whatever legitimate restrictions may be put on data access, practi cally all research could benefit from more systematic sharing." NOTE: For more information, see Organisation for Economic Co-operation and Development.
|
From page 63... ...
BARRIERS TO SHARING DATA Despite the many benefits to be gained by the sharing of research data and results, even a cursory survey of research activity reveals many circumstances in which access to data is limited. Because researchers require time to verify data, analyze their data, and derive research conclusions, individual researchers generally are not expected to make all their data public immediately.
|
From page 64... ...
Cultural norms and expectations in research fields regarding data can change over time. For example, as data sharing has proven increasingly valuable to the advancement of research in many areas of the life sciences, researchers, sponsors, research institutions, and other stakeholders have built new infrastructure and established guidelines to facilitate data sharing.
|
From page 65... ...
Although the journal has a statement saying "Authors are required to maintain their data and supply it to other researchers upon request," 14 of the 15 sets of authors to whom the economists wrote said that they did not have the data or would not share them. The authors summarized their findings in an article and submitted it to the American Economic Review, which published their paper.
|
From page 66... ...
Strong culture of sharing High level of barriersa Policy has medium Medium propensity to positive effect publish datasets Social and Public Health Weak culture of sharing Low level of barriers Policy has little positive Low propensity to publish Sciences effect datasetsb RELUc Medium culture of Low level of barriers Policy has medium Medium propensity to sharing positive effect publish datasets Climate Science Weak culture of sharing Low level of barriersd Policy has medium Low to medium propensity positive effect to publish datasets a The Arts and Humanities Data Service was established in 1995 to provide a national service to collect, preserve, and promote electronic resources in the arts and humanities; its funding was eliminated in 2008. b This descriptor covers researchers not directly connected with a national data collection.
|
From page 67... ...
Washington, DC: The National Academies Press. data and other information supporting research results that emphasize openness and expanded access, including research performed by companies.
|
From page 68... ...
There are instances where PHI may be disclosed, but the need to support published research is not among them. For PHI to be made publicly available, a subject must agree to the disclosure of the information.
|
From page 69... ...
Though some companies have been experimenting with the benefits of freely sharing results from proprietary research,15 many companies carefully guard this information as a trade secret and a potential source of commercial advantage. Similarly, an academic researcher may temporarily withhold data in order to file a patent or develop a commercial product, even when the research is publicly funded.
|
From page 70... ...
However, those data may have great value for other researchers, and making data publicly accessible can speed the advance of knowledge. THE COSTS OF LIMITING ACCESS TO DATA Barriers that restrict access to data, such as withholding data or delaying their release, can result in substantial costs.17 Once data have been gathered from an instrument or compiled from other sources, it is obviously more costeffective to share the data than to reconstruct or recompile them.
|
From page 71... ...
Especially as data collections grow in size and complexity, small groups may have difficulty providing data to other researchers in the same field, much less making data readily accessible to researchers in fields less directly connected to the research, or to the public. Access to data can also become an issue of contention in cases where research has important implications for public policy or has a potential for affecting private interests in such areas as the environment or health.
|
From page 72... ...
. a clear explanation of analytical methods is mandatory." The report also points to the need for researchers, professional societies, journals, and research sponsors involved in paleoclimate research to improve access to data and methods.
|
From page 73... ...
27 These cases raise important and difficult questions: When are researchers justified in withholding underlying data and methods? What recourse do colleagues, policy makers, and the public have when data or methods underlying research on important policy issues are withheld?
|
From page 74... ...
Federal agencies have been central in sustaining a strong public domain in data.30 With regard to research data, private companies and nonprofit entities play an important role in creating databases and information services that are utilized by researchers. The existence of copyright protection for creative and original data collections provides an incentive for investments in valuable products and services in the private sector.
|
From page 75... ...
These technical measures include hardware and software-based access controls, increasingly effective forms of encryption, and other forms of digital rights management that limit access to or copying of data. In addition, in 1996 the European Community enacted a Directive on the Legal Protection of Databases that established a framework for new proprietary rights specific to databases.33 Experts have warned that a combination of expanded copyright protections, advances in technological means of restricting access to digital content, and database protections of the type that Europe has adopted could enable the assertion and enforcement of proprietary claims to factual matter that previously entered the public domain as soon as it was disclosed.34 The United States and many other countries have not followed the European Union in establishing a new intellectual property regime for databases.
|
From page 76... ...
In recent years, efforts have been undertaken to utilize licensing to actively foster an expanded public domain. Although, as noted above, data are not subject to copyright protection, uncertainties about what data users are legally allowed to do with them can inhibit sharing and reuse.
|
From page 77... ...
Researchers and their employers have this option, particularly if they do not plan to seek credit for the findings by reporting or publishing the results. Also, in cases where research at a university is supported by a private company, a research contract may provide for a short delay in publication or sharing data until the patentability of the research findings can be evaluated and, if appropriate, patent applications are filed.
|
From page 78... ...
Subscription prices for traditional STM journals have seen steep increases, putting severe pressure on research library budgets.41 Concurrently, open access STM journals have emerged as a significant part of the scholarly publishing world.42 One prominent example of an open access publisher is Public Library of Science (PLoS) , which publishes several high-impact journals in the life sciences.
|
From page 79... ...
shall require in the current fiscal year and thereafter that all investigators funded by the NIH submit or have sub mitted for them to the National Library of Medicine's PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, that the NIH shall implement the public access policy in a manner consistent with copyright law." 45 Research institutions are also adopting open access recommendations for faculty research, encouraging faculty to provide electronic copies of their articles for submission to an institutional or other open access repository, generally with an embargo period of 6 to 12 months. This is an international trend, with research institutions or sponsors (both public and private)
|
From page 80... ...
of 1999 and the Information Quality Act (IQA) of 2001, also known as the Data Quality Act.48 The DAA is also known as the "Shelby Amendment," after its sponsor, Senator Richard Shelby of Alabama.
|
From page 81... ...
disseminated by Federal agencies." In response, OMB issued guidelines that all agencies "must embrace a basic standard of quality as a performance goal, and agencies must incorporate quality into their information dissemination practices."52 The guidelines state that "if an agency is responsible for disseminating influential scientific, financial, or statistical information, agency guidelines shall include a high degree of transparency about data and methods to facilitate the reproducibility of such information by qualified third parties."53 For "original and supporting data," agencies are to consult with "relevant scientific and technical communities" and determine which data are subject to the reproducibility requirement.54 "Reproducibility" here means a high level of transparency about research design and methods, which is meant to negate any need to replicate work before dissemination. For "analytic results" there must be "sufficient transparency about data and methods that an independent reanalysis could be undertaken."55 This means that "independent analysis of the original or supporting data using identical methods would generate similar analytic results, subject to an acceptable degree of imprecision or error."56 In cases where the public does not have access to data and methods (privacy, security, trade 50 See National Research Council, Access to Research Data in the 21st Century.
|
From page 82... ...
The GAO report also found that agencies generally do not monitor whether data-sharing requirements are being met and have not overcome barriers to sharing, such as the lack of appropriate data archives in some subfields of climate science. Although specific federally sponsored research programs include a range of data-sharing mandates, no federal agency has yet adopted an agencywide open access data mandate, analogous to NIH's open access publication mandate.
|
From page 83... ...
At a more formal level, international research projects establish data-sharing protocols that reflect the norms of the fields in which they are operating. Some of the larger research or infrastructure programs are establishing data centers or federated networks for sharing of data resources.
|
From page 84... ...
For example, the Research Councils of the United Kingdom adopted a more open policy for their data holdings in 2006. The Ministry of Science and Technology in China initiated the Scientific Data Sharing Project in 2002, in recognition of the fact that "[t]
|
From page 85... ...
Yet the basic principle that should guide decisions involving research data supporting publicly reported research results is clear: Data Access and Sharing Principle: Research data, methods, and other information integral to publicly reported results should be publicly accessible. This principle applies throughout research, but in some cases the open dissemination of research data may not be possible or advisable when viewed from the perspective of enhancing research in science, engineering, or medicine.
|
From page 86... ...
."67 The UPSIDE principle calls on researchers employed in the academic, government, and commercial sectors to provide data and materials needed to support published findings, and to "provide them in a form on which other scientists can build with further research." The 1997 report Bits of Power: Issues in Global Access to Scientific Data states that "full and open access to scientific data should be adopted as the international norm for the exchange of scientific data derived from publicly funded research."68 RESPONSIBILITIES OF RESEARCHERS As with the integrity of research data, the primary responsibility for sharing data lies with the researchers who produced them. (In addition, other parts of the research enterprise have responsibilities for sharing data, as described later in this chapter and in the next chapter.)
|
From page 87... ...
The important point is that the reasons should be publicly available so that others can review and comment on the grounds for withholding data. As discussed in the following section, the committee believes that research fields, research sponsors, research institutions, and journals have considerable ability to set appropriate standards and expectations regarding data access and sharing, and to develop the necessary incentives.
|
From page 88... ...
Recommendation 6: In research fields that currently lack standards for the sharing of research data, such standards should be developed through a process that involves researchers, research institutions, research sponsors, professional societies, journals, representatives of other research fields, and representatives of public interest organizations, as appropriate for each particular field. The development of standards and institutions can occur in different ways depending partly on the field of research in which it occurs.
|
From page 89... ...
Research data produced by scientists working within Federal agencies should, to the maximum extent possible and consistent with existing Federal law, regulations, and Presidential directives and orders, be made publicly available consistent with established practices in the relevant fields of research. This principle is consistent with the Data Sharing and Access Principle stated above.
|
From page 90... ...
Although it is not impossible to prescribe a standard set of practices to which all researchers should adhere -- indeed, the general principles stated in this report apply to all researchers -- every field collectively and every researcher individually must address issues of data accessibility. RESPONSIBILITIES OF RESEARCH INSTITUTIONS, RESEARCH SPONSORS, PROFESSIONAL SOCIETIES, AND JOURNALS For researchers to make their data accessible, they need to work in an environment that promotes data sharing and openness.
|
From page 91... ...
NIH can take various actions to protect the Federal Government's interests."70 These actions are not specified but may affect the review of future proposals. As discussed above, research institutions, research sponsors, and journals have considerable leverage in encouraging data access and sharing on the part of researchers.
|
From page 92... ...
The following chapter covers the responsibilities of journals to make data accessible in the context of the long-term preservation of research data.
|
From page 93... ...
According to an article announcing the new policy, the goal of the new require ment is to promote "reproducible research" in which independent researchers can reproduce results using the same procedures and data as the original investigators. Reproducible research does not require unlimited access to data and methods, but it requires access to as much of the dataset and statistical procedures as is necessary to reproduce the published results.
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.