| Ti | = | Data Sharing |
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| Intro.sec | = | Term Definition |
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| Accountability.sec | = | {_Accountability} The obligation to explain and justify conduct. |
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| Anonymisation.sec | = | {_Anonymisation} The irreversible delinking of identifying information from associated data. |
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| Audit.sec | = | {_Audit} A systematic review to evaluate adherence to applicable laws and policies. |
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| Big_Data.sec | = | {_Big_Data}: Large and complex datasets typically combining multiple sources of information and analyzed through novel computational methods. |
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| Biobank.sec | = | {_Biobank}: An organized collection of human biological material and associated data which is stored, processed and searchable. |
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| Clinical_Trial.sec | = | {_Clinical_Trial}: A study involving human participants to investigate the efficacy and/or safety of one or more medicines or other health-related interventions. |
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| Cloud_Computing.sec | = | {_Cloud_Computing}: Shared computing resources accessible over the internet that can include capabilities for processing and storing data. |
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| Coding.sec | = | {_Coding}/{_Pseudonymisation}: The act of replacing an identifier with a code for the purpose of avoiding direct identification of the participant, except by persons holding the key linking the code and identifier. |
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| Cohort.sec | = | {_Cohort}: A group of individuals identified by common characteristic(s) (e.g., demographic, exposure, illness) or studied over time using a common protocol. |
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| Confidentiality.sec | = | {_Confidentiality}: The ethical and legal obligation of an individual or organization to safeguard data or information by controlling access as authorized by law or by the data donor. |
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| Conflict_of_Interest.sec | = | {_Conflict_of_Interest}: One or more connections or interests (personal, social, financial or professional) that influence, or could be perceived to influence, professional integrity and independence. |
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| Consent.sec | = | {_Consent}: Voluntary and informed expression of the will of a person, or if incompetent, his/her legal representative. |
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| Note | = | Expanded Controlled/Restricted Access to both terms. |
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| Controlled_Access.sec | = | {_Controlled_Access}/{_Restricted_Access}: Access to data that is subject to conditions and an approval process. |
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| Restricted_Access.sec | = | {_Controlled_Access}/{_Restricted_Access}: Access to data that is subject to conditions and an approval process. |
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| Data.sec | = | {_Data}: Observations, narratives or measurements that are assumed as the basis for further analysis, calculation or reasoning. |
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| Data_Access.sec | = | {_Data_Access}: Committee A committee that reviews and authorizes applications for data access and use. |
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| Data_Breach.sec | = | {_Data_Breach}: The unauthorized collection, access, use, disclosure or release of data. |
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| Data_Curation.sec | = | {_Data_Curation}: The process of selecting, annotating, maintaining, archiving and tracking data. |
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| Data_Donor.sec | = | {_Data_Donor}: The individual whose data have been collected, held, used and shared. |
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| Data_Embargo.sec | = | {_Data_Embargo}: Defined period of time when data are unavailable for wider access. |
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| Data_Linkage.sec | = | {_Data_Linkage}: The process by which records representing the same entity or individual are linked across multiple data sources. |
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| Data_Protection.sec | = | {_Data_Protection}s: The set of laws, policies and procedures that aim to minimize intrusion into people’s privacy, uphold confidentiality, and penalize undue intrusions and/or breaches. |
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| Data_Security.sec | = | {_Data_Security}: The protection of the confidentiality, availability and integrity of data. |
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| Data_Sharing.sec | = | {_Data_Sharing}: Extending access to data for the purpose of research or analyses. |
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| Data_Steward.sec | = | {_Data_Steward}: An entity responsible for assuring the quality, integrity, and access arrangements of data and metadata in a manner that is consistent with applicable law, institutional policy, and individual permissions. |
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| Note | = | Expanded Data (or Material) Transfer Agreement to both terms. |
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| Data_Transfer_Agreement.sec | = | {_Data_Transfer_Agreement}/{_Material_Transfer_Agreement}: A binding legal agreement between the provider and the recipient of data (or materials) that sets forth conditions of transfer, use and disclosure. |
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| Material_Transfer_Agreement.sec | = | {_Data_Transfer_Agreement}/{_Material_Transfer_Agreement}: A binding legal agreement between the provider and the recipient of data (or materials) that sets forth conditions of transfer, use and disclosure. |
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| Database.sec | = | {_Database}: Data and information that are managed and stored in a systematic way to enable data analyses. |
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| Dataset_A.sec | = | {_Dataset}: A collection of data which may be a subset in a database. |
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| De-identification.sec | = | {_De-identification}: The removal or alteration of any data that identifies an individual or could, foreseeably, identify an individual in the future. |
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| Destroy.sec | = | {_Destroy}: To take all necessary steps to ensure that data are no longer stored or able to be used. |
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| Disclosure.sec | = | {_Disclosure}: The revelation of confidential information about an individual. |
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| Disclosure_Risk.sec | = | {_Disclosure_Risk}: The probability of confidential information being revealed about an individual. |
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| Encryption.sec | = | {_Encryption}: A mechanism of safeguarding stored data or information by making those data or information unreadable without access to the correct decryption method. |
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| Ethical_Guideline.sec | = | {_Ethical_Guidelines}: A framework to guide decision-making based on accepted ethical principles and practice. Ethics review committee/ |
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| IRB.sec | = | {_IRB}/ {_REC}/{_REB}: An independent committee for the ethical review of research activities. |
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| Governance.sec | = | {_Governance}: The process of policy making and management that guides and oversees research in a consistent and structured manner. |
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| Harmonization.sec | = | {_Harmonization}: The process of unifying certain policies, methodologies and approaches in order to achieve interoperability. |
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| Note | = | Expanded Identifiable/ Personal Data |
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| Identifiable_Data.sec | = | {_Identifiable_Data}/{_Personal_Data}: Data that alone or in combination with other data may reasonably be expected to identify an individual. |
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| Personal_Data.sec | = | {_Identifiable_Data}/{_Personal_Data}: Data that alone or in combination with other data may reasonably be expected to identify an individual. |
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| Note | = | Compressed "Identity and Access Management" into IAM, as in other documents |
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| IAM.sec | = | {_Identity_and_Access_Management}/{_IAM}: A set of processes and supporting technologies that enable the creation, maintenance, use, and revocation of digital identity. |
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| Incidental_Finding.sec | = | {_Incidental_Finding}s: A finding discovered in the course of clinical care or research concerning an individual that is beyond the aims of the clinical care or research. |
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| Individual_Research_Result.sec | = | {_Individual_Research_Result}s: A finding discovered in the course of research concerning an individual that relates to the aims of the research. |
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| Information.sec | = | {_Information}: Data that have already been interpreted, i.e. they have meaning in a specific context. Legacy Data or Biospecimens Data (or biospecimens) previously collected for research or for clinical care, where new proposed uses may not be covered. |
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| Note | = | Expanded Medical/Health Record |
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| Medical_Record.sec | = | {_Medical_Record}/{_Health_Record}: A paper or electronic record created in the health care system which contains medical and health-related information about an individual and is used to record and support health care for that individual. |
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| Health_Record.sec | = | {_Medical_Record}/{_Health_Record}: A paper or electronic record created in the health care system which contains medical and health-related information about an individual and is used to record and support health care for that individual. |
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| Metadata.sec | = | {_Metadata}: Data that describe other data. |
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| Open_Data_Access.sec | = | {_Open_Data_Access}: Making data available without restriction. |
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| Opt-in.sec | = | {_Opt-in}: A consent mechanism where an active choice is made to participate. |
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| Opt-out.sec | = | {_Opt-out}: A consent mechanism where consent is implied unless an active choice is made not to participate. |
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| Personal_Data.sec | = | {_Personal_Data}/ {_Identifiable_Data}: Data that alone or in combination with other data may reasonably be expected to identify an individual. |
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| Privacy.sec | = | {_Privacy}: The right and freedom to control access to information about oneself. |
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| Pseudonymisation.sec | = | {_Pseudonymisation}/{_Coding}: The act of replacing an identifier with a code for the purpose of avoiding direct identification of the participant, except by persons holding the key linking the code and identifier. |
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| Public_Domain.sec | = | {_Public_Domain}: The body of knowledge and innovation in relation to which no person or other legal entity can establish or maintain proprietary interests. |
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| Public_Engagement.sec | = | {_Public_Engagement}: An inclusive act ranging from the active involvement of a population or sub-population in the development, management or governance of a project, to the provision of information and raising awareness of a project. |
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| Quality.sec | = | {_Quality_Conformity}: of data, biospecimens or processes with pre-established specifications appropriate to the purpose to which the data, biospecimens or processes will be put. |
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| Registered_Access.sec | = | {_Registered_Access}: A system of authentication and self-declaration prior to providing access to data. |
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| Re-Identification.sec | = | {_Re-Identification}: The act of associating specific data or information within a dataset with an individual. |
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| Return_of_Result.sec | = | {_Return_of_Result}s: Communication of research results to an individual or a designated health care provider or family member. |
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| Risk.sec | = | {_Risk}: The probability that an event, favorable or adverse, will occur within a defined time interval. |
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| Safe_Haven.sec | = | {_Safe_Haven}: A repository in which data are stored and accessed in ways that maintain their integrity and quality whilst meeting relevant ethical and legal controls on their use and dissemination. |
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| Secondary_uses.sec | = | {_Secondary}: uses Using data or biospecimens in a way that differs from the original purpose for which they were generated or collected. |
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| Supervisory_Authority.sec | = | {_Supervisory_Authority}: The public authority (or authorities) in a given jurisdiction responsible for monitoring the application of law and administrative measures adopted pursuant to data privacy, data protection and data security. |
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| Surveillance.sec | = | {_Surveillance}: The systematic collection, monitoring and dissemination of health data to assist in planning, implementation and evaluation of an action or intervention such as research or public health. |
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| Traceability.sec | = | {_Traceability}: The ability to verify the history, location, or application of an item, by means of documented recorded identification. For a biospecimen this pertains to any step of its handling, including donation, collection, processing, testing, storage, and disposition. |
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| Trusted_Third_Party.sec | = | {_Trusted_Third_Party}: An individual or organization that safeguards access to information linking individuals to their data and biospecimens. |
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| Vulnerable_Person.sec | = | {_Vulnerable_Person}s / {_Vulnerable_Population}s: Individuals or groups requiring special considerations and/or under the protection of governments, institutions or legal representatives including but not limited to children, the elderly, and those with mental health issues. |
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| Vulnerable_Population.sec | = | {_Vulnerable_Person}s / {_Vulnerable_Population}s: Individuals or groups requiring special considerations and/or under the protection of governments, institutions or legal representatives including but not limited to children, the elderly, and those with mental health issues. |
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| sec | = | {Intro.sec} |
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| = | [G/Z/Base] |
/Docs/G/GA4GH/Data-Sharing-Lexicon/Sec/Def/0.md