Requirements of data providers
Appropriate ESRC Data Service Providers, for example the UK Data Service or Administrative Data Service, should be approached in the first instance for advice on current data producer requirements. Researchers may also consult directly with data producers regarding project-specific issues. The fact that an original piece of research has gone through ethics review for its data collection does not rule out additional ethics issues arising during data re-use. Data that have been anonymised may have a residual risk of disclosure, or may become disclosive when linked with other data within the public domain. The licensing regime provided by ESRC’s Data Service Providers (eg UK Data Service) helps to mitigate this risk. Providing researcher access to disclosive material for re-use will increase the risk of disclosure, but doing so through appropriate secure access facilities will remove almost all of that marginal additional risk. A data producer such as the Office for National Statistics (ONS) or other government department may also have stringent requirements and restrictions relating to access and re-use of data that should be followed. Legal and data producers’ access requirements on the re-use of datasets should be complied with, including provisions relating to presumed consent and potential risk of disclosure of personal data.
ESRC’s big data infrastructure
The enormous volume and complexity of data that is now being collected by government departments, businesses and other organisations represents a significant resource within the UK which can be used to the mutual benefit of academic research, organisations and society as a whole.
Research using big data can offer insights into individuals’ lives and social worlds at a grander scale and with finer granularity, but the information and power that this data can afford demands new ways of thinking about research ethics to prevent abuse and protect privacy.
As big data is often collected in the course of delivering a service and not for research purposes, in some cases individuals may not have consented for different levels of their data re-use, they may not have had an ‘opt out’ choice or they may not be able to give their informed consent. Also the level of information provided by big data along with the possibility of data linkage increases the risks of identification and re-identification.
Since 2013, the ESRC has invested in big data research infrastructures including the four Administrative Data Research Centres (England, Northern Ireland, Scotland, Wales) and the Administrative Data Service, the Urban Big Data Centre, the Business and Local Government Data Research Centre and the Consumer Data Research Centre. These infrastructures rely on policies and procedures that put a series of safeguards in place for safe access to data for high-quality socio-economic research with societal impacts. We expect researchers using these resources to adhere to these policies and guidelines, and to use the infrastructure as a further source of advice and best practice more generally.
Data access through a biobank (research tissue bank)
Social scientists are also making greater use of data held in a public or private biobank. Some biobanks have their own research ethics committees or technical access committees which review the research and whether access and the nature of the proposed research will be in line with the consent given by participants. For example, the UK Biobank utilises broad consent (consent to a framework for access) and has stringent measures in place to ensure that participants are not identified. Researchers should follow the access procedures and conditions of the relevant biobank.