It is often believed that use of secondary data relieves the researcher from the burden of applying for ethical approval – and sometimes, from thinking about ethics altogether. But the whole process of research involves ethical considerations, whether or not any primary data collection is involved. This starts from the initial design of the study, which should aim at the public good (and at the very least should do no harm) and continues until communication of results, which should ensure transparency, publicness and replicability. More specifically, what ethical issues will the data collection and analysis stages involve, when secondary data are used?
Secondary data are usually defined as those that were collected as part of a different research, with purposes other than those of the present study. They may be official statistical data (census for example, but also, increasingly, administrative data), data gathered by commercial operators (time series of stock prices for example), and researchers’ data from past projects. They are more often quantitative, although secondary analysis of qualitative data is becoming more and more common.
Weighing risks and benefits
Use of secondary data is in itself, a highly ethical practice: it maximizes the value of any (public) investment in data collection, it reduces the burden on respondents, it ensures replicability of study findings and therefore, greater transparency of research procedures and integrity of research work. But the value of secondary data is only fully realized if these benefits outweigh the risks, notably in terms of re-identification of individuals and disclosure of sensitive information.
For this to happen, use of secondary data must meet some key ethical conditions:
- Data must be de-identified before release to the researcher
- Consent of study subjects can be reasonably presumed
- Outcomes of the analysis must not allow re-identifying participants
- Use of the data must not result in any damage or distress
Continue reading “Research ethics in secondary data: what issues?”
National Statistical Institutes (NSIs) have long been the recognised repositories of all socio-economic information, mandated by governments to collect and analyse data on their behalf. The development of big data is shaking this world. New actors are coming in and commercially-oriented, privately-produced information challenges the monopoly of NSIs. At the same time, NSIs themselves can tap into digital technologies and produce “big” data. More generally, these new sources offer a range of opportunities, challenges and risks to the work of NSIs.
The Statistical Journal of the IAOS, the flagship journal of the International Association for Official Statistics, has published a special section on big data – of particular interest to the extent that it is free of charge!
Fride Eeg-Henriksen and Peter Hackl introduce this special section by defining big data and emphasising its interest for official statistics. But it is crucial, albeit admittedly not easy, to separate the hype around big data from its actual importance.
The other papers are concrete examples of how big data may be integrated into official statistics:
Continue reading “New publications on big data and official statistics”
A major health data plan is on the verge of being called off, to never have a chance again. It is supposed to anonymise all the patient records in the National Health Service (NHS) in the UK, linking them together into one single, giant database, and making them available under controlled use conditions to health researchers and (controversially) to commercial companies too. Public outcry has led to the plan being delayed for six months.
In an article published in The Guardian last week, Ben Goldacre, a medical doctor and high-profile media commentator on science matters, rightly identifies what the point is: in principle, the public accepts release of data for scientific purposes, but resists commercial exploitation. And rightly so: medical knowledge results from the study of several cases, and the higher the availability of cases, the more accurate the results; in the era of big data, it is also clear that aggregation and sharing of a wealth of data such as those held by the NHS is a unique opportunity for medical science to discover ways of saving lives. On the other hand, use of data for any other purposes looks much more opaque, and people understandably feel it might lead to discrimination and potentially negative individual consequences, for example if disclosure of the health history of a person results in higher insurance premiums, or rejection of job applications.
Continue reading “Sharing medical data for research: Why we should all care”