0-9
A
- Aggregate genomic data
- Aggregate genomic data (also known as Genomic Summary Results) are the output of analysis of genomic data across the many individuals included within a specific dataset.
- Anonymised data
- Data that were related to an identifiable individual when collected, but through a process of removing all direct identifiers prevents the identity of an individual from being readily determined by a reasonably foreseeable method. A key to re-identify the data does not exist.
B
C
D
- Data Access
- Data Access means the ability to make use of data through retrieval, transmission, viewing, editing, and/or analysis
- Data Custodian
- The Data Custodian is accountable for how data is managed and governed, including the safe collection, aggregation, storage, use, movement, disclosure or destruction of data.
- Data Donor
- An individual who has consented to their data being collected, held, used or shared for a research purpose.
Note: Data collected for patient care is not considered a donation. Patients may be considered data donors if they consent to that data being used for research. When referring to circumstances in which there is a promise of benefit (e.g payment), it may be preferable to use an alternative term.
- Data Interoperability
- Data interoperability is the technical ability to move information efficiently, securely and predictably between organisations and systems using accepted data standards. These standards can vary across research and healthcare settings.
- Data Sharing
- Making information or data available to another agency, organisation or person under agreed conditions.
- Data Sovereignty
- In the context of Australia and genomic data, data sovereignty is the authority of a jurisdiction (federal or state) to determine how its data is collected, processed, and shared, as well as enforce its own laws and regulations related to data protection and privacy.
Please note that an additional term will be provided for Indigenous Data Sovereignty and will be presented to our Indigenous Perspectives Investigators for advice.
- Data Visiting
- Data visiting is a form of data access whereby data users view and analyse the data within the computing environment(s) of the data provider(s).
- Data linkage
- The process by which records representing the same entity or individual are connected across two or more sources of data.
- De-identified data
- Data with all associated personal identifiers and other indices removed and replaced with a unique identifier that can be used for re-identification by a person with access to the key.
E
F
G
- Genomic data/information
- Data or information relating to the inherited or acquired genetic characteristics of a person, their family and/or community.
Note: there are other types of genomic data, but this project is concerned only with human genomic data
H
- Health Information/ Data:
- A subset of ‘sensitive information’ (see above) and includes:
• Information collected in connection with the provision of a health service
• Information or opinion about the health or disability of an individual
• An individual’s expressed wishes about the provision of health services
• Any information about health services provided to an individual.
I
J
K
L
M
- Metadata
- Data about stored data. For example: its properties, history, versions etc.
N
O
- Open data
- Publicly available data that can be freely used, reused and redistributed by anyone.
P
- Personal Information
- Information or an opinion, whether true or not, and whether recorded in writing or spoken form, about an individual whose identity is apparent, or can reasonably be ascertained, from the information or opinion.
- Pseudonymization (of data)
- RECOMMENDATION: Avoid use of this term. Refer to
anonymisation of data or de-identification of data as appropriate to the
process.
Q
R
- Raw genomic data
- Refers to genomic data that has not been cleaned, organised, reformatted or translated into information. Raw genomic data that has been altered or transformed into a format that is used for analysis and/or visualisation, is processed data.
S
- Secondary Use
- Using data or biological samples in a way that differs from the original purpose for which they were generated or collected.
- Sensitive Information/data:
- Sensitive information is a subset of personal information. It means information or an opinion about an individual’s racial or ethnic origin, political opinions, membership of a political association, religious beliefs or affiliations, philosophical beliefs, membership of a professional or trade association, membership of a trade union, sexual orientation or practices, or criminal record, or health, genetic or biometric information about an individual.
T
U
- Unstructured Data
- Information that either does not have a pre-defined data model and/or is not organised in a predefined manner. Forms of unstructured data relevant to genomics can include: free text descriptions and summaries of health information, clinician notes, text files (e.g. word documents, PDF documents) patient/research subject videos images and audio files.
V
W
X
Y
Z