Big data and ethics
Digital data presents researchers and ethics committees with novel ethical issues.
The proliferation of digital data and internet-based technologies is transforming the research landscape, and researchers and ethics communities are struggling to anticipate and respond to the ethical issues being raised.
Unprecedented data access has been greatly facilitated by the use of digital devices for data capture and storage in research, and individuals' growing reliance on these technologies in everyday life. Personal information emitted by such devices (with or without their users' intent or knowledge) may be used either solely, or linked with administrative data, as an efficient and abundant resource for research purposes.
The commercial sector well recognises the value of such linked data 'bundles' to target specific markets. In addition, they afford new opportunities for interdisciplinary research, potentially informing a range of application areas including health and social policy.
Researchers have clear ethical obligations to ensure the privacy and confidentiality of personal information when accessing and analysing these emerging forms of data. Given the potential for linkage to make data re-identifiable, this requirement can be challenging. As ever, a strong case must be made for the social and economic benefits of information use, particularly where individual consent cannot be directly obtained.
With funding from the Carlton Connect Initiative, DSSRN Steering Group members and interdisciplinary collaborators have developed guidelines to assist researchers and ethics committees working in this area.