Open Access to Data Confidentiality, Consent and Archive Access CESSDA, Athens October John Southall ESDS Qualidata

ESDS overview core archiving services plus four specialist data services: –collections development strategy –ingest activities - including data and documentation processing, metadata creation –data dissemination services –long-term preservation provides access and support for key economic and social data: –ESDS Government –ESDS International –ESDS Longitudinal –ESDS Qualidata provides:dedicated web sites data and documentation enhancements user support training

Collections held at UKDA 5,000+ datasets in the collection 200+ new datasets are added each year 6,500+ orders for data per year 18,000+ datasets distributed worldwide per year history data service in-house (AHDS History) mainly quantitative but some qualitative

Protective of confidentiality conditions for access to quantitative collections conditions of access to qualitative collections how is confidentiality defined and quantified? –micro-level: research project/collection consent; ethics committees –macro-level: national data protection and Freedom of Information legislation

The impact of consent on confidentiality research consent covered on our advice pages clarity of consent requirements at time of deposit allows us to interpret needs for: anonymisation; data security and processing as set by researchers and participants difficulties in defining consent consent for the research process AND consent for archiving and re-use

Consent for archiving (1) anonymity and privacy of research participants should be respected explicit ‘informed’ consent gained information for research participants should be clear and coherent and include: –purpose of research –what is involved in participation –benefits and risks –storage and access to data –usage of data (current and future uses) –withdrawal of consent at any time –Data Protection and Copyright Acts N.B. additional measures are needed when participants are unable to consent through incapacity or age reflect needs and views of all works in practice

encourage researchers to think consent through think about confidentiality during and after research –regularly updated advice based on feedback and ongoing research evaluations –consent form examples (not exemplars!) viewed as part of data management important for archiving but exclusive of it what else influences confidentiality and consent at this level? Consent for archiving (2)

Ethics committees traditionally gatekeepers of researchers concerns over confidentiality highly attuned to needs of participants not always aware of need to archive or preserve data especially qualitative e.g. medical research ESDS working to improve situation – highlight the value of sharing data macro-level issues are also important…

UK legislation on data macro-level issues shape confidentiality and access ‘duty of confidentiality’ law of defamation data protection act 1998 freedom of information

Duty of confidentiality disclosure of information may constitute a breach of confidentiality and possibly a breach of contract not governed by an Act of Parliament not necessarily in writing can be a legal contract exemptions are: –relevant police investigations or proceedings –disclosure by court order –‘public interest’ - defined by the courts –ethical obligations in cases of disclosure of child abuse

Law of Defamation a defamatory statement is one which may injure the reputation of another person, company or business most relevant in qualitative research

Data Protection Act 1998 eight principles: –fairly and lawfully processed –processed for limited purposes –adequate, relevant and not excessive –accurate –not kept longer than necessary –processed in accordance with the data subject's rights –secure –not transferred to countries without adequate protection allows for secondary use of data for research purposes under certain conditions

Freedom of Information Freedom of Information Act 2000 a statutory right for individuals and organisations to request information held by public authorities.

What is the legislation? statutory rights of access to information apply to public authorities – e.g. ESRC and the universities are public authorities anyone, anywhere can request copy of any information you hold – includes datasets not all information has to be released must respond to most requests in 20 days

Exemptions –information protected by law not all information has to be made available under FoI and EIRs FOI provide a number of exemptions that can be applied to the release of information the presumption is that information will be made available unless for good reason (a public interest test) exemptions protect scientific output, commercial business and personal information (through the Data Protection Act) exemptions can be complex and difficult to apply. If in doubt, ask….

Responding to these factors ESDS/ UKDA has to work within these restrictions processing of all data has to maintain needs of confidentiality has to be available to researchers but not open access – policed and restricted access some of the basics…

Identifiers 'Direct' and 'indirect' identifiers may threaten confidentiality direct identifiers may have been collected as part of the survey administration process and include names, addresses including postcode information, telephone number etc. indirect identifiers are variables which include information that when linked with other publicly available sources, could result in a breach of confidentiality - this could include geographical information, workplace/organisation, education institution or occupation

Quantitative data remove the identifier from the dataset aggregate/reduce the precision of a variable –record the year of birth rather than the day, month and year –record postcode sectors (first 3 or 4 digits) rather than full postcode bracket a coded (categorical) variable –aggregated SOC up to 'minor group' codes by removing the terminal digit generalise the meaning of a nominal (string) variable restrict the upper or lower ranges of a continuous variable

Qualitative data transcription or source recording? remove the identifiers from the dataset ideally should reflect any pseudonyms used in publications confidentiality and consent respected problems of anonymisation – where used –applied too weakly –applied to strongly –timing –potential for distortion –examples appropriate and sympathetic

Options for preserving confidentiality after release standard restrictions negotiated and agreed through depositor licence same licences and access conditions for quantitative and qualitative deposits use of access control and agreed restrictions to guard confidentiality some flexibility based on the needs of the collection user undertakings have to be honoured some examples…

Access conditions/conditions of usage registration required (through ATHENS system) available to commercial and/or non-commercial users depositors to be informed of usage (before or after) embargoed – held for archival purposes only and unavailable for use external registration required before access permitted

Recent innovations discourage long periods of embargo development of a special licence model for quantitative collections (large-scale government series) enable access to more detailed micro data: a richer source of UK survey data than previously available initiated in a climate of: –increased caution regarding data confidentiality –the requirement that government material be made more readily accessible

Background to the process high quality, well-documented, nationally representative with large samples, with some running for many years fully anonymised and certain variables, particularly those relating to geography, may be suppressed or aggregated to minimise disclosure risk research need for more detailed data, in particular geography more detail increases the risk of intentional or inadvertent data disclosure depositors concerned about researchers gaining access to more detailed data in the usual way

Development of the Special Licence meetings held between UKDA, ONS and ESDS Government examined existing safeguards produced a ‘Special Licence’ to facilitate access to more detailed data developed a guide to good practice researchers are now able to apply for access to data that include lower level geographical identifiers

The End User Licence to preserve the confidentiality of individuals, households, or organisations to supply the bibliographic details of any published work not to pass the data on to unauthorised users to keep means of access secure to abide by any ‘further conditions’ understand breach will lead to termination of access Researchers agree that standard access means that they undertake:

Special Licence (1) a ‘further condition’ of the EUL signed by research team (each member must be registered), ONS, UKDA also signed by a departmental head, chair of ethics committee, head of division requires: –description of intended statistical use of data –justification for access to more detailed data

Clauses on – standards and methods for disclosure control for any outputs right of depositor to screen outputs data and site security data destruction sanctions Special Licence (2)

Special Licence data a number of ONS datasets are now available under a Special Licence - –Annual Population Survey –Labour Force Survey –2001 Census data ONS intends to deposit standard and SL versions of all their social survey datasets a number of other depositors will also be using this initiative

Conclusion confidentiality – like consent - should be considered by researchers before research begins practices within archives should seek to address the needs of users this has to be secondary to original undertakings of researchers and national legislation advice on legislation regarding confidentiality is important to encourage deposits and as re-use continues to grow

Useful links advice pages on ethical and legal questions – pages with consent form discussion – example of catalogue record with special licence –SN Census: Special Licence Household Sample of Anonymised Records – archive.ac.uk/findingData/snDescription.asp?sn=5278