“ImmPort is funded by the NIH, NIAID and DAIT in support of the NIH mission to share data with the public. Data shared through ImmPort has been provided by NIH-funded programs, other research organizations and individual scientists ensuring these discoveries will be the foundation of future research….
The Immunology Database and Analysis Portal (ImmPort) has been developed under the ImmPort Contract by the Northrop Grumman Information Technology Health Solutions team for the National Institutes of Health (NIH), National Institute of Allergy and Infectious Diseases (NIAID), Division of Allergy, Immunology, and Transplantation (DAIT).
ImmPort is a partnership between researchers at the University of California-San Francisco, Stanford University, the University of Buffalo, the Technion – Israel Institute of Technology, and Northrop Grumman.
The goals of the ImmPort project are to:
Provide an open access platform for research data sharing
Create an integrated environment that broadens the usefulness of scientific data and advances hypothesis-driven and hypothesis-generating research
Accelerate scientific discovery while extending the value of scientific data in all areas of immunological research
Promote rapid availability of important findings, making new discoveries available to the research community for further analysis and interpretation
Provide analysis tools to advance research in basic and clinical immunology…
Private data and pre-release data are stored in private workspaces of investigators at the ImmPort site located at NIAID….”
“The data in electronic health records overlaps with the types of data collected for clinical research. This provides opportunities for data sharing and reuse without reentry or transcription, thus supporting open science and learning health systems. Building better bridges between research and health care offers limitless possibilities for facilitating research and improving health care delivery….”
“The first human genome was sequenced in 2001 at a cost of $3 billion. Today, human genome sequencing costs less than $1000, and in a few years the price will drop below $100. Thus, personal genome sequencing will soon be widely adopted as it enables better diagnosis, disease prevention, and personalized therapies. Furthermore, if genomic data is shared with researchers, the causes of many diseases will be identified and new drugs developed. These opportunities are creating a genomic data market worth billions of dollars….The Nebula peer-to-peer network will enable data buyers to acquire genomic data directly from data owners without middlemen. This will enable data owners to receive sequencing subsidies from data buyers and profit from sharing their data….”
“Nebula Genomics will have its own coin and go head to head with Ancestry.com and Google-backed 23andMe. George Church, a professor at Harvard and MIT, is taking a different tack than his genetics testing rivals. He’s developed a token-fueled system on the blockchain that monetizes DNA to incentivize members to participate in genome sequencing. It keeps personal DNA data in the hands of the individual — not big pharma — letting them choose if they want to share and monetize that data for research purposes….Based on Professor Church’s research, no other human genomics company even comes close to delivering on what Nebula Genomics can do….Professor Chruch points to open protocol that gives scientists the ability to “aggregate standardized data” across people and databases. It’s unclear whether he plans on launching an upcoming ICO.”
“There are equally important reasons for embracing open-source principles. Transparency begets reproducibility and allows subsequent methodologic advancement. Cross-collaboration is inherent in science, and allowing our work to flow unfettered across institutions can propel the field. One such example, the Montreal Neurological Institute and Hospital, which recently become the first open-science institute in the world, foresees accelerated innovation, participation, and implementation of clinical research by removing existing data barriers.”
“Two years have passed since I requested release of the PLOS One PACE data, eight months since the Expression of Concern was posted. What can we expect?…
The PLOS One Senior Editors completed the pre-specified process of deciding what to do about the data not being shared. They took no action. …
International trends will continue toward making uploading data into publicly accessible repositories a requirement for publication. PLOS One has slowed down by buying into discredited arguments about patient consent forms not allowing sharing of anonymized data….”
“This primer addresses key issues that research funders encounter when considering the adoption and implementation of an open data policy. The guide covers big-picture topics such as how to decide on the range of activities an open data policy should cover. It also delves into areas of very specific concern, such as options for where data can be deposited, and how privacy and other concerns can be managed.”
“A leading genomic scientist has called on people who have their DNA analysed to make the full results openly available “for the greater public good”. …While conceding that “open access to genome sequences is not for everyone”, he hoped that many people would donate their genomes openly to science once they understood the risks and benefits….”