Glossary¶

Abstract

This page collect common terms and acronyms used within the GHGA Project.

Administrative Data: Data which are generated through the operation of GHGA Data Infrastructure. This may include personal data which is directly identifying, such as names and email addresses which are used to communicate with, and support, service users. It may also include personal data and business data which are used internally by staff working on behalf of GHGA Central or GHGA Data Hubs. Personal administrative data is jointly controlled by the GHGA Operations Consortium members according to the Joint Controller Contract.
Central-to-Data-Hub-Bilateral Contract (Bilateral Contract): Agreement between GHGA Central and a GHGA Data Hub. Based on the GHGA Data Hub Cooperation Contract it regulates the relationship between GHGA Central and the Data Hub and the corresponding rights and responsibilities in full detail. In particular it defines the processor to sub-processor relationship between GHGA Central and the individual Data Hub. It also enables adjustments with respect to local infrastructures and federal data protection law where required.
Data Access Committee (DAC): An abstract body, potentially a panel of people, deciding on Data Access Requests and authorized by the Research Data Controller.
Data Access Committee Representative (DACR): A natural person authorized by the Data Access Committee to communicate decisions made by the DAC to GHGA.
Data Access Request (DAR): A request to obtain access to Research Data stated by a Data Requester.
Data Processing Contract (DPC): Bilateral agreement signed by GHGA Central and a Research Data Controller who wishes to deposit data in the archive. The agreement regulates the rights and duties of the controller and GHGA Central in processing the deposited data.
Data Requester (DR): Institution that requests access to data via the GHGA Data Infrastructure.
Data Requester Representative (DRR): Natural person acting on behalf of the Data Requester. The term is used for persons communicating data access requests to the Research Data Controller on behalf of the Data Requester as well as for persons that were authorized to retrieve the data for the Data Requester in the corresponding Data Transfer Agreement.
Data Steward: Data Stewards are the staff members who (besides other duties) operate the GHGA Helpdesk. They are responsible for assisting users of the GHGA Data Infrastructure with data transfer to the GHGA Data Infrastructure, access requests and responding to queries. Data Stewards will be employed at each of the GHGA Data Hubs.
Data Submitters: Users who are depositing data with GHGA Central (and includes the Data Controller, if not the same person(s), as defined in the Data Processing Contract). The Data Controllers will regularly operate one or several Data Access Committees (DACs) facilitating decision-making regarding access to the research data shared via the GHGA Data Infrastructure.
European Genome-phenome Archive (EGA): The European Genome-Phenome Archive (EGA) provides archiving and sharing support for personally identifiable genetic and phenotypic data. It is operated jointly by the European Molecular Biology Laboratory - European Bioinformatics Institute (EMBL-EBI), an intergovernmental organisation, and the Centre for Genomic Regulation in Barcelona (CRG). The EGA is developing a federated model through which national nodes will take on the archiving of genomic-phenomic data for their country; this federated network of institutions will be referred to as the federated EGA (fEGA). EGA will take over the coordinating function as operator of EGA-Central, GHGA is planned as the national node for Germany.
Federated EGA Collaboration Agreement: Agreement between GHGA Central and EGA Central. Defines the rights and responsibilities of EGA Central and GHGA as the German Node. Describes the governance structure of the Federated EGA network. Includes details around IP, liability, disputes, and off-boarding. No personal Research Data is exchanged between GHGA Central and EGA Central (see §2.4.2).
GHGA Central: Deutsches Krebsforschungszentrum (DKFZ) shall be the legal entity responsible for GHGA Data Infrastructure. The responsibilities are outlined in the GHGA Data Hub Cooperation Contract and are to be fulfilled in accordance with the regulations outlined in this contract. These responsibilities will include taking on the role of a data processor for the research data submitted to the GHGA Data Infrastructure. Within this agreement, DKFZ will be referred to as GHGA Central. DKFZ will also operate a GHGA Data Hub.
GHGA Collaboration Contract: Regulates the organisation of the GHGA Consortium to carry out the GHGA Project. Does not regulate the exchange of Person-related Data.
GHGA Consortium: The organisations that have signed the GHGA Cooperation Contract (Appendix 1 to the GHGA Data Hub Cooperation Agreement) in December 2020 and receive (some of) their funding as part of the Nationale Forschungsdateninfrastruktur (NFDI) from the German Research Foundation (DFG).
GHGA Data Hub Cooperation Contract (DHCC): This contract is agreed by GHGA Central and GHGA Operations Consortium members that operate, or wish to operate, a GHGA Data Hub. The contract sets out the structure of the Operations Consortium, including a definition of the roles and responsibilities of members as well as the data governance framework. The appendices define a number of common standards that will be utilised by GHGA, including the Joint Controller Agreement for Personal Administrative Data.
GHGA Data Hub Pre-Operations Consortium Board: This board is responsible for the initial development of the GHGA Operations Consortium. This may include members from any GHGA Member institution.
GHGA Data Hub: A GHGA Consortium Member that stores and processes research data for the purposes of archiving and secondary analysis for scientific research purposes on behalf of GHGA Central. The responsibilities are set out in the GHGA Data Hub Cooperation Contract.
GHGA Data Infrastructure: GHGA Central, together with the GHGA Operations Consortium, will operate an IT infrastructure to enable FAIR (findable, accessible, interoperable and reusable) data sharing of human omics data for scientific research purposes as defined by the Joint Controller Contract ((Appendix 3 to the GHGA Data Hub Cooperation Agreement)) and the Bilateral Contracts.
GHGA Helpdesk: The GHGA Helpdesk will be operated by staff from each institution that operates a GHGA Data Hub. The GHGA Helpdesk will be the main point of contact for service users. The helpdesk software is operated by the DKFZ as GHGA Central.
GHGA Operations Consortium Board: The GHGA Operations Consortium Board shall meet bimonthly to take decisions regarding the operation of the GHGA Operations Consortium and GHGA Data Infrastructure. It will also provide advice and guidance to GHGA Central on data processing matters.
GHGA Operations Consortium: GHGA Central and the GHGA Data Hub s. The GHGA Operations Consortium Board will be responsible for decision-making within the GHGA Operations Consortium.
GHGA Operations Data Committee: The GHGA Operations Data Committee will be made up of the Data Stewards from each of the GHGA Data Hubs guided by a Helpdesk Lead. This committee shall meet weekly to discuss the allocation of research data to GHGA Data Hubs and other matters relating to the operation of the GHGA Data Infrastructure. The Helpdesk Lead will report the outcomes of the meetings with the GHGA Operations Consortium Board.
GHGA Partner: An organisation that is working or intends to work with the GHGA Consortium but which does not receive funding as part of the NFDI-DFG funding. The nature of the relationship will be defined in a Partner Agreement but they will not process research data on behalf of GHGA Central and do not become involved in the processing of personal administrative data.
GHGA Project: The Project refers to the overall GHGA structure. This includes GHGA Central, the GHGA Consortium, and GHGA Partners who are working together to make genomic-phenomic data available.
GHGA Request for Comments (GRFC): GHGA Request for Comments is a short document type developed to clarify technical, legal and organisational assumptions that set the boundaries for the implementation of services and solutions that GHGA offers.
Helpdesk Lead: The Helpdesk Lead manages the tasks of the GHGA Helpdesk and coordinates the work of the Data Stewards. The Helpdesk Lead is responsible for responding to requests from data subjects regarding administrative data and acts as a liaison between the Data Stewards and the GHGA Operations Consortium Board.
Joint Controller Agreement for Personal Administrative Data (JCA): The document governs the joint controllership of the administrative data by the institutions which are part of the GHGA Operations Consortium. Appendix to GHGA Data Hub Cooperation Contract.
Metadata Processing Contract: This agreement covers the deposition and sharing of metadata in the GHGA Metadata Catalog during the GHGA Catalog phase of the project. During GHGA Catalog, only Non-personal Metadata describing Research Data will be processed and shared; the corresponding Research Data and Personal Metadata remain with the Data Controller and are not stored by the GHGA Operations Consortium.
Metadata: Information that describes or annotates research data to aid understanding or to describe the relationship between data items. It may be personal or non-personal.
Non-personal Metadata: Information that describes or annotates research data to facilitate its interpretation or to describe the relationship between data elements. For example, the name of the instrument used to generate the data or information defining a group of data subjects. Non-personal metadata will be available for public search online within the GHGA Data Infrastructure.
Omics Data: The Research Data collected as part of omics-based research. This research focuses on collecting information regarding the entire set of certain molecules in a sample. Within the context of GHGA, Omics Data linked to genetic information of an individual are of particular interest since in many cases omics data would fall under the definition of personal data in Art. 4 Nr. 1 GDPR. Types of Omics Data considered in GHGA are e.g.: genomics – the entirety of the hereditary information in a sample’s DNA; transcriptomics – the entirety of the RNA transcribed from DNA; epigenomics – information on epigenetic modifications of the genetic materials.
Personal Metadata: Information that describes or annotates research data to facilitate its interpretation or to describe the relationship between data elements. For example, demographic data or information on the ancestry of the data subjects of the research data that allow conclusions to be drawn about individuals and thus fall within the scope of the GDPR, Art. 4 No. 1 GDPR. Personal metadata are made available to the data requester together with the research data only under controlled access after release by the data submitter.
Research Data Controller (RDC): Institution that is the controller (as defined by the GDPR) of Research Data and that contracted GHGA for processing the Research Data on their behalf. The term is also used for the corresponding party if the processing of the Research Data is only intended, i.e. before such a contract is established.
Research Data Controller Representative (RDCR): Natural person representing the Research Data Controller when establishing the contractual relationship with GHGA.
Research Data Submitter (RDSU): Natural person authorized by the Research Data Controller to peform the upload of Metadata and Research Data on behalf of the Research Data Controller.
Research Data: Omics or other forms of genetic (Art. 4 Nr. 13 GDPR) and health data (Art. 4 Nr. 15 GDPR) that are used for scientific research purposes. This is considered to be special category personal data under Art. 9 (1) in conjunction with Art. 4 Nr. 1 GDPR.
Service User: Person who is contacting the GHGA Helpdesk for any form of user support.
Submission Reviewer (SR): Natural person authorized by the Research Data Controller to review a data upload before the submission is finalized and eventually made publicly findable by GHGA.