“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….”
“The Privacy Tools Project is a broad effort to advance a multidisciplinary understanding of data privacy issues and build computational, statistical, legal, and policy tools to help address these issues in a variety of contexts. It is a collaborative effort between Harvard’s Center for Research on Computation and Society, Institute for Quantitative Social Science, Berkman Klein Center for Internet & Society, and Data Privacy Lab, and MIT Libraries’ Program on Information Science.
Our work is funded by the National Science Foundation, the Sloan Foundation, the US Bureau of the Census, and Google. Any opinions, findings, conclusions, or recommendations expressed on this website are those of the author(s) and do not necessarily reflect the views of our funders….”
“Some fields such as paleontology and archaeology have long maintained restrictions on the publication of site locations and promoted government policies and regulations to limit collection and trade in fossils, artefacts, and culturally sensitive and/or scientifically important material. Organizations such as the U.S. Forest Service do not disclose geospatial data in order to protect research sites. Other solutions include modification of research permits so that endangered species locations are not automatically uploaded into wildlife databases and masking such records on private land, as presently occurs in some states in the United States.
Is this relevant to any public health research? Other than personally identifiable information, what types of health data should not be made widely available?”
“Psychological Science is now introducing some minor changes designed to increase the frequency and ease with which editors and reviewers of submissions can access data and materials as part of the peer-review process. I anticipate that, in addition to enhancing the review process, these changes will further increase the percentage of Psychological Science articles for which researchers can quickly and easily access data and materials postpublication. The changes we are introducing are tweaks and nudges, not radical shifts. In the following, I explain the changes and why they are worth undertaking.”