Press release from the National Academies:
Though digital technologies and high-speed communications have significantly expanded the capabilities of scientists — allowing them to analyze and share vast amounts of data — these technologies are also raising difficult questions for researchers, institutions, and journals. Because digital data can be manipulated more easily than other forms, they are particularly susceptible to distortion. Questions about how to maintain the data generated, who should have access, and who pays to store them can be controversial.
Maintaining the integrity and accessibility of research data in a rapidly evolving digital age will take the collective efforts of universities and other research institutions, journals, agencies, and individual scientists, says a new report from the National Academy of Sciences, National Academy of Engineering, and Institute of Medicine, which recommends principles to guide these stakeholders in generating, sharing, and maintaining scientific data.
Research institutions need to ensure that every investigator receives appropriate training in conducting research and managing data responsibly, the report says. And these institutions, along with professional societies, journals, and research sponsors, should develop and disseminate standards for ensuring the integrity of research data and update specific data-management guidelines to account for new technologies. After an investigation by the Journal of Cell Biology revealed that a significant number of images submitted to them had been inappropriately manipulated, for example, the journal issued guidelines on acceptable and unacceptable ways to alter images. Ultimately, though, researchers themselves are responsible for ensuring the integrity of their research data, said the committee that wrote the report.
The report recommends that researchers — both publicly and privately funded — make the data and methods underlying their reported results public in a timely manner, except in unusual cases where there is a compelling reason not to do so, such as concern about national security or health privacy. In such cases, researchers should publicly explain why data are being withheld. But the default position should be that data will be shared — a practice that allows data and conclusions to be verified, contributes to further scientific advances, and allows the development of beneficial goods and services.
Research data can be valuable for many years after they are generated — for verifying results and generating new findings — but maintaining high-quality and reliable databases can be costly, the report observes. Researchers should establish data-management plans at the beginning of each research project that provide for the stewardship of data, and research sponsors should recognize that financial support for data professionals is an appropriate part of supporting research. Professional societies should provide investigators with guidance about which data should be saved for the long term and which can be discarded.
The report was sponsored by the National Research Council, U.S. Department of Agriculture, NASA, U.S. Geological Survey, U.S. Department of Health and Human Services, U.S. Department of Energy, Eli Lilly and Co., Burroughs Wellcome Fund, Nature Publishing Group, the Rockefeller University Press, New England Journal of Medicine, American Chemical Society, Federation of American Societies for Experimental Biology, American Association for the Advancement of Science, American Geophysical Union, and IEEE. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. They are independent, nonprofit institutions that provide science, technology, and health policy advice under an 1863 congressional charter.
Copies of Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age are available from the National Academies Press; tel. 202-334-3313 or 1-800-624-6242 or on the Internet at http://www.nap.edu . Reporters may obtain a copy from the Office of News and Public Information (contacts listed above).
Hi,
My name is Zenneia McLendon and I am writing from the National Academies. We are pleased to see that you have chosen to write about our most recent report “Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age”. This report is available to read online http://tr.im/tHrS. We hope that by reading the report it will enhance the conversation.
Thank you so much, Zenneia. I suspect that regular readers of this blog are likely to be concerned about a default “sharing” approach on health-related information (even though there may be exceptions as noted in the report). The notion of default sharing seemingly rides roughshod over an individual’s right to control the uses of their personal — and otherwise private — health information. Notions of “the greater good” or even well-intended goals of developing beneficial treatments do not necessarily outweigh individuals’ right to privacy — at least not as far as some of us are concerned.
Then, too, there have already been instances in other areas where data they were supposedly “anonymized” or “de-identified” were all too easily identified (the AOL fiasco and a more recent case discussed by Michael Zimmer come to mind).
Although the National Academies report recommends that fields set standards on data integrity (under which privacy seems to be subsumed), it will be important that any such standards be developed in collaboration with organizations that are knowledgeable about the privacy and security issues involved in having medical or behavioral sciences data available online.
Kind regards,
Dissent