The commons are all based upon the principles of open and FAIR data, participant partnered data, open-source software, open access publications, open principles for interoperating with other data platforms. Here you can learn more about how we support open science and patient/participant partnered research.
Responsible sharing of health-related data*
Working Groups will ensure that the operation of a data commons, including the collection, storage, provision of access to, and analysis of data will be conducted to
- Promote health, well-being, and the fair distribution of benefits
- Respect individuals, families, and communities
- Advance research and scientific knowledge
- Foster trust, integrity, and reciprocity
Maximize collective impact of investment in data commons
Working Groups wherever possible will leverage existing technologies, standards, and data models and will work to advance open technologies and open science.
Membership in commons ecosystem
To the extent that a commons will interact with any other commons in the broader ecosystem, Working Groups will strive to ensure reciprocity in terms of data and or services accessed.
*Adapted from https://www.ga4gh.org/genomic-data-toolkit/regulatory-ethics-toolkit/framework-for-responsible-sharing-of-genomic-and-health-related-data/
Open Data, Open Source Software, and Open Access Publications
In general, we support open science by:
- Whenever possible, making the data associated with their projects, including both open access and controlled access data, publicly available using a data commons, data repository or similar resource accepted by the research community that the Working Groups are supporting. In general, data should be released to the public as soon as possible, but with a data embargo lasting no later than six months after the project is concluded.
- Some data is sensitive and, even though publicly available, is only available to the public after appropriate data use agreements are executed, with the understanding that the data will only be used in IT environments with the required security and privacy safeguard to protect controlled access data.
- When data is exceptionally sensitive, then instead of releasing the data to the public, the data may only be available via specialized environments, gateways that support federated queries, analysis or workflows, or via other mechanisms designed to protect especially sensitive data in accordance to applicable federal and state laws including contractual obligations.
- In general, Working Groups will place preprints of their research paper in archives or repositories for research articles and publish their research in open access journals and publications.
- In general, Working Groups will license their software using open source software licenses and distribute their open source software using applications designed for this purpose.
Open Access Data, Controlled Access Data and FAIR Data
It is important to distinguish between closed data that is proprietary and not generally available, has fees associated with the use of the data, or has other restrictions of this type.
In contrast, data may be open and generally available to the public, or in some cases, generally available to the research community.
Open data may be open access and available to anyone or controlled access and only available to those who have signed the necessary data use agreements and have systems that have the necessary security and compliance policies, procedures and controls.
Data in the Commons is open and findable, accessible, interoperability and reusable (FAIR).
Commons are structured with: i) a core (“Core”) and ii) an ecosystem of other systems, data sources and resources, computational resources, software services, applications, and notebooks.
- The “Core” is open source, standards based, uses open APIs, and the data that it contains is available without restriction (open data), except for those restrictions required to protect data derived from human subjects, or the privacy restrictions required by consumer apps that collect the data.
- The applications, systems, data and other resources outside the Core can be open or proprietary, free or fee-based, but are all required to satisfy not only all required legal and regulatory requirements, but also the ethical guidelines developed by the ELSI Working Group.
- It is important to note that term open data here means that the data is available via open APIs and without fees. As mentioned above, open data may be open access and available to anyone or controlled access and only available to those who have signed the necessary data use agreements and have systems that have the necessary security and compliance policies, procedures and controls. It is important to emphasize that all controlled access data will be made available only to those that have signed the required data use agreements and are authorized to work with it.
- Any philanthropic funds provided to support the Commons are expected to impose the restriction that the work they support is developed as open source and supports open data, but the components built in this way by Consortium Members may be part of a larger proprietary system or fee-based system or service.
- The core platform will use the security and compliance policies, procedures and controls from NIST 800-53 that support a FISMA Moderate system.