“In 2005, [George Church] launched the Personal Genome Project (PGP), which collects data on a person’s DNA, environmental background, and relevant health and disease information from consenting participants. The premise of the PGP is grounded in open science, meaning that all this data is publicly available to researchers, who then study the relationship between specific DNA sequences and various displayed traits, like having an especially good memory.
This openness is the hallmark of the PGP, described on their website as “a vision and coalition of projects across the world dedicated to creating public genome, health, and trait data.” The PGP seeks to share data for the “greater good” in ways that have been previously “hampered by traditional research practices.” In other words, by being set up so it’s open-access project that allows individuals to freely share their data with researchers, no single researcher can “control” access to the data. By inviting participants to openly share their own personal data, this project allows individuals to directly impact scientific progress….”
“Changes to European legislation mandating public access to information about company owners is likely to stir up trouble when the time comes for privacy-obessed Germany to transpose the rules into national law….”
Klaus Graf argues against the HBZ conclusion that the GDPR required it to block access to the historically important archives of the HBZ mailing lists.
“GDPR has a dual objective, protecting the data subject and, at the same time, increasing the free and lawful flow of data. By adhering to the GDPR principles, the research community is able to ensure maximum protection of personal data while maximizing the potential of opening research to the world.”
“A “PA” (Protected Access) notation may be added to open data badges if sensitive, personal data are available only from an approved third party repository that manages access to data to qualified researchers through a documented process. To be eligible for an open data badge with such a notation, the repository must publicly describe the steps necessary to obtain the data and detailed data documentation (e.g. variable names and allowed values) must be made available publicly. This notation is not available to researchers who state that they will make “data available upon request” and is not available if requests for data sharing are evaluated on any criteria beyond considerations for compliance with proper handling of sensitive data. For example, this notation is not available if limitations are placed on the permitted use of the data, such as for data that are only made available for the purposes of replicating previously published results or for which there is substantive review of analytical results. Review of results to avoid disclosure of confidential information is permissible….”
“Frankl is a blockchain platform and tokenised economy to promote, facilitate, and incentivise the practice of open science. The initial focus of Frankl is cognitive assessment – an area of our expertise, and a research domain that faces particular challenges that are amenable to blockchain solutions.
In Phase I, Frankl will develop app-based cognitive assessments that streamline test administration and improve accessibility for children and adults with physical or cognitive disabilities. Apps will interface with blockchain-based data storage, facilitating data sharing for clinical and research purposes while maintaining privacy of individuals via encryption. Access to the Frankl suite of apps will be via micropayments in Frankl tokens.
In Phase II, Frankl will release the source code for the apps, enabling researchers, clinicians, and independent app developers to build their own cognitive assessment apps on the Frankl platform. In this way, Frankl will create a marketplace to incentivise (via Frankl tokens) the development of new and better cognitive assessments, simultaneously promoting open science and disrupting the forecast (by 2021) USD 8 billion global market for cognitive assessment and training.
This whitepaper outlines the technical specifications for the Frankl platform, the practical path to its creation, and exemplar applications including our first use case – a cognitive assessment specifically designed for autistic children. We provide details of the Frankl token economy and participation, and sketch out our long term vision for the development of Frankl as an interface whereby blockchain technologies facilitate the widespread adoption of open science practices. …”
“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….”