Advantages of a Truly Open-Access Data-Sharing Model — NEJM

“Multi-institutional randomized clinical trials have been a feature of oncology research in the United States since the 1950s. Since that time, cancer-treatment trials have been continuously funded by the National Cancer Institute (NCI) through a program that has evolved to become the National Clinical Trials Network (NCTN). Currently, approximately 19,000 patients with cancer participate in NCTN clinical trials each year. Approximately 70,000 additional patients with cancer are enrolled each year in treatment trials sponsored by the pharmaceutical industry.1,2

It is important to honor and reward the altruism of patients who participate in clinical trials. One way to do so is to share the data gathered in clinical trials with other researchers in a responsible and meaningful way. The cancer research community, encouraged by recommendations from the Beau Biden Cancer Moonshot, is finally moving data sharing forward from its traditional, largely unfunded, place at the end of the long list of clinical research responsibilities to center stage.

There are a number of reasons why it has it taken more than 60 years for this issue to receive the attention that it deserves. Although the incentives for doing so may differ, competitive forces lead both academic researchers and pharmaceutical companies to protect data and to use data exclusively for their purposes. This approach protects their intellectual property and also shields the primary study team and the sponsor if the release of data from a trial for analysis by others leads to conclusions or interpretations that the primary researchers deem to be misleading or erroneous. When the academic and monetary stakes are high, the chance of this situation occurring is real. Another reason for the delay is that the protection of research participants dictates that confidentiality is the highest priority, and this risk may be greater with wide sharing of the new data-dense individual data sets that are required in order to develop personalized medicine approaches. Finally, and probably most important of all, data sharing has been hampered by a lack of resources, including access to enabling data systems technology, bioinformatics expertise, and legal agreements that facilitate sharing.”

Advantages of a Truly Open-Access Data-Sharing Model — NEJM

“Multi-institutional randomized clinical trials have been a feature of oncology research in the United States since the 1950s. Since that time, cancer-treatment trials have been continuously funded by the National Cancer Institute (NCI) through a program that has evolved to become the National Clinical Trials Network (NCTN). Currently, approximately 19,000 patients with cancer participate in NCTN clinical trials each year. Approximately 70,000 additional patients with cancer are enrolled each year in treatment trials sponsored by the pharmaceutical industry.1,2

It is important to honor and reward the altruism of patients who participate in clinical trials. One way to do so is to share the data gathered in clinical trials with other researchers in a responsible and meaningful way. The cancer research community, encouraged by recommendations from the Beau Biden Cancer Moonshot, is finally moving data sharing forward from its traditional, largely unfunded, place at the end of the long list of clinical research responsibilities to center stage.

There are a number of reasons why it has it taken more than 60 years for this issue to receive the attention that it deserves. Although the incentives for doing so may differ, competitive forces lead both academic researchers and pharmaceutical companies to protect data and to use data exclusively for their purposes. This approach protects their intellectual property and also shields the primary study team and the sponsor if the release of data from a trial for analysis by others leads to conclusions or interpretations that the primary researchers deem to be misleading or erroneous. When the academic and monetary stakes are high, the chance of this situation occurring is real. Another reason for the delay is that the protection of research participants dictates that confidentiality is the highest priority, and this risk may be greater with wide sharing of the new data-dense individual data sets that are required in order to develop personalized medicine approaches. Finally, and probably most important of all, data sharing has been hampered by a lack of resources, including access to enabling data systems technology, bioinformatics expertise, and legal agreements that facilitate sharing.”

Resisting the Resistance: Resisting Copyright and Promoting Alternatives – Journal of Law and Technology

Abstract: “This article discusses the resistance to the Digital Revolution and the emergence of a social movement “resisting the resistance.” Mass empowerment has political implications that may provoke reactionary counteractions. Ultimately—as I have discussed elsewhere—resistance to the Digital Revolution can be seen as a response to Baudrillard’s call to a return to prodigality beyond the structural scarcity of the capitalistic market economy. In Baudrillard’s terms, by increasingly commodifying knowledge and expanding copyright protection, we are taming limitless power with artificial scarcity to keep in place a dialectic of penury and unlimited need. In this paper, I will focus on certain global movements that do resist copyright expansion, such as creative commons, the open access movement, the Pirate Party, the A2K movement and cultural environmentalism. A nuanced discussion of these campaigns must account for the irrelevance of copyright in the public mind, the emergence of new economics of digital content distribution in the Internet, the idea of the death of copyright, and the demise of traditional gatekeepers. Scholarly and market alternatives to traditional copyright merit consideration here, as well. I will conclude my review of this movement “resisting the resistance” to the Digital Revolution by sketching out a roadmap for copyright reform that builds upon its vision.”

Legitimacy of reusing images from scientific papers addressed | EurekAlert! Science News

“Taxonomic papers, by definition, cite a large number of previous publications, for instance, when comparing a new species to closely related ones that have already been described. Often it is necessary to use images to demonstrate characteristic traits and morphological differences or similarities. In this role, the images are best seen as biodiversity data rather than artwork. According to the authors, this puts them outside the scope, purposes and principles of Copyright. Moreover, such images are most useful when they are presented in a standardized fashion, and lack the artistic creativity that would otherwise make them ‘copyrightable works’.

‘It follows that most images found in taxonomic literature can be re-used for research or many other purposes without seeking permission, regardless of any copyright declaration,’ says Prof. David J. Patterson, affiliated with both Plazi and the University of Sydney.

Nonetheless, the authors point out that, ‘in observance of ethical and scholarly standards, re-users are expected to cite the author and original source of any image that they use.’ Such practice is ‘demanded by the conventions of scholarship, not by legal obligation,’ they add.

However, the authors underline that there are actual copyrightable visuals, which might also make their way to a scientific paper. These include wildlife photographs, drawings and artwork produced in a distinctive individual form and intended for other than comparative purposes, as well as collections of images, qualifiable as databases in the sense of the European Protection of Databases directive.

In their paper, the scientists also provide an updated version of the Blue List, originally compiled in 2014 and comprising the copyright exemptions applicable to taxonomic works. In their Extended Blue List, the authors expand the list to include five extra items relating specifically to images.”

Open Education Licensing Project

“The Open Education Licensing Project was a joint research and development project undertaken by Swinburne University of Technology and the University of Tasmania in 2015/16. In 2015 the project team surveyed and collected information from managers, educators and information professionals in Australian universities about their understanding and experiences with licensing issues for open online education. On the basis of information collected, in 2016 the team developed the OEL Toolkit to support the use and development of Open Educational Resources (OER) in the Australian higher education sector….The OEL Toolkit is essentially a decision-tree web application designed support the use, creation, modifying or sharing of Open Educational Resources in the Australian higher education sector….”

Fair Open Access Principles – Filling a much-needed gap

“I [Mark Wilson] have been working for the last 18 months with a group of talented and committed people to accelerate conversion of subscription journals to open access. There are many barriers, and many pitfalls. For example, so-called “predatory” open access journals that take authors’ money and provide no quality control have gained considerable publicity and must be avoided. Large, inefficent and greedy commercial publishers have attempted to “double-dip” by introducing Hybrid OA. Otherwise well-run open access journals still have high publication charges. Our aim is to avoid these problems by retaining community control of journals and adhering to high ethical standards. Here is a list of our basic principles, based on the original version introduced by LingOA. This list was developed after extensive discussion and some consultation with other OA advocates such as Peter Suber and Marie Farge. We hope it will be useful in delineating what we see as the ideal way to publish journals. This is not to say that all other ways are necessarily “unfair”, of course, although some of them clearly are! …”

Welcome to Ambra

“Ambra is an innovative Open Source platform for publishing Open Access research articles. It provides features for post-publication discussion and versioned articles that allows for a “living” document around which further scientific discoveries can be made. The platform is in active development by PLOS (Public Library of Science) and is licensed under the MIT License….”

AAAS and Gates Foundation Partnership Announcement | Science | AAAS

“The American Association for the Advancement of Science (AAAS) and the Bill & Melinda Gates Foundation have formed a partnership to advance scientific communication and open access publishing. The partnership will also ensure open access to research funded by the Gates Foundation and published in the Science family of journals….As a result of this partnership, AAAS will allow authors funded by the Gates Foundation to publish their research under a Creative Commons Attribution license (CC BY) in Science, Science Translational Medicine, Science Signaling, Science Advances, Science Immunology or Science Robotics. This means that the final published version of any article from a Foundation-funded author submitted to one of the AAAS journals after January 1, 2017 will be immediately available to read, download and reuse….”

Data sharing policy

“At JBE we believe that original and novel research is vitally important, so too are the studies that follow to confirm or repudiate their findings.

We also believe in the creative re-use of data. Allowing other researchers access to the data that you have collected considerably extends its value. Creative re-use offers the opportunity to validate your findings as well as exploring new ways of using it. It also means that funding bodies and patients involved in the research see their initial investment grow.

Like other journals starting to build upon the value of data sharing and publishing (see PLoS Medicine & Annals of Internal Medicine ), we would like to you to indicate your willingness to share your protocol, dataset and the statistical code used for your analysis with other authors. We encourage authors who publish secondary analysis to use the same Creative Commons licence that we use; encouraging ongoing open access to your data and the knowledge derived from it.

We strongly encourage you to discuss sharing your data on the JBE website with our Editorial team (info@openmedicine.ca) after we have accepted your paper. We look forward to working together on this exciting open initiative….”