Open science: The findings of medical research are disseminated too slowly | The Economist

ON JANUARY 1st the Bill & Melinda Gates Foundation did something that may help to change the practice of science. It brought into force a policy, foreshadowed two years earlier, that research it supports (it is the world’s biggest source of charitable money for scientific endeavours, to the tune of some $4bn a year) must, when published, be freely available to all. On March 23rd it followed this up by announcing that it will pay the cost of putting such research in one particular repository of freely available papers.

Gates Foundation announces open-access publishing venture : Nature News & Comment

“One of the world’s wealthiest charities, the Bill & Melinda Gates Foundation in Seattle, Washington, is set to launch its own open-access publishing venture later this year. The initiative,Gates Open Research, was announced on 23 March and will be modelled on a service begun last year by the London-based biomedical charity, the Wellcome Trust. Like that effort, the Gates Foundation’s platform is intended to accelerate the publication of articles and data from research funded by the charity.”

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.”

Do US Patent Incentives Need To Change To Get The ‘Cancer Moonshot’ Off The Ground? – Intellectual Property Watch

“The Moonshot is a partnership with the public, and significant public funds are being invested in the project. It is not so simple, however, to argue that information generated under the Moonshot can be ordered to be shared. When private companies work together on this project, they won’t just be sharing their data but sharing how they collect that data. Much of this information falls under the category of trade secrets, which companies guard closely….[Jacob] Sherkow advocates for prohibiting information that could be shared from eligibility as trade secrets….This would be coupled with a broadening of patentability criteria, said Sherkow. “Broadening up patentable subject matter has its disadvantages, to be sure, but in something like a public-private partnership, where the name of the game is creating information and then disclosing it to people, that’s definitely better than having the taxpayer pay for private trade secrets that vest in a for-profit company,” he said….”

Do US Patent Incentives Need To Change To Get The ‘Cancer Moonshot’ Off The Ground? – Intellectual Property Watch

“The Moonshot is a partnership with the public, and significant public funds are being invested in the project. It is not so simple, however, to argue that information generated under the Moonshot can be ordered to be shared. When private companies work together on this project, they won’t just be sharing their data but sharing how they collect that data. Much of this information falls under the category of trade secrets, which companies guard closely….Sherkow advocates for prohibiting information that could be shared from eligibility as trade secrets….This would be coupled with a broadening of patentability criteria, said Sherkow. “Broadening up patentable subject matter has its disadvantages, to be sure, but in something like a public-private partnership, where the name of the game is creating information and then disclosing it to people, that’s definitely better than having the taxpayer pay for private trade secrets that vest in a for-profit company,” he said….”

George Church, Lumosity want those with good memory to ‘share it, not hoard it’ – Boston Business Journal

“Harvard researcher George Church is looking for people with exceptionally good memory to take part in a study aimed at finding genetic mechanisms that boost memory in research that could one day result in better drugs or diagnostic tests….“Our goal is to get people who have remarkable memory traits and engage them in the PGP. If you are exceptional in any way, you should share it, not hoard it,” said George Church….The goal is to recruit 10,000 members who have already participated in Harvard’s Personal Genome Project, an open research project started in 2005 in which individuals shared their genome sequences, biospecimens and health care data for unrestricted research….”

Elsevier announces the launch of Burns Open | EurekAlert! Science News

“Elsevier, a world-leading provider of scientific, technical, and medical information products and services, has announced the launch of Burns Open: An International Open Access Journal for Burn Injuries. Published on behalf of the International Society for Burn Injuries (ISBI), and a companion to Burns, this new international open access journal aims to foster the exchange of information on burn care among practitioners and others interested in the field. Burns Open is now accepting submissions and is scheduled to begin publication in February 2017….”

Open Science Prize announces epidemic tracking tool as grand prize winner | National Institutes of Health (NIH)

“A prototype online platform that uses real-time visualization and viral genome data to track the spread of global pathogens such as Zika and Ebola is the grand prize winner of the Open Science Prize

(link is external). The international team competition is an initiative by the National Institutes of Health, in collaboration with the Wellcome Trust and the Howard Hughes Medical Institute (HHMI). The winning team, Real-time Evolutionary Tracking for Pathogen Surveillance and Epidemiological Investigation(link is external), created its nextstrain.org(link is external)prototype to pool data from researchers across the globe, perform rapid phylogenetic analysis, and post the results on the platform’s website. The winning team will receive $230,000 to fully develop their prototype with NIH awarding $115,000 to the U.S. members of the winning team, and the Wellcome Trust and HHMI also contributing $115,000 to the winning team.”