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?”
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”
If you are a researcher in economics, demography, sociology, geography or political science, you may have experienced the frustration of discovering a relevant data resource and being denied access to it — typically on the ground that data release would violate the confidentiality of data subjects. Or you may have heard of fantastic analyses — with all the fancy new statistical and econometrics tools and software that are increasingly in fashion today — done with large amounts of very detailed microdata, but you have no clue how to do anything like that yourself. Maybe you have tried to look at the website of some public administration that likely holds the data you want – like labor market or business data — but could not figure out how to ask for these data in the first place. And f you ever tried to access data from two or more different countries, you probably found the task of even finding out how to apply in different systems daunting.
Now, there is a great opportunity for you to get closer to your goal. The European project “Data without Boundaries” (DwB) offers social scientists from across Europe funding, information and support to access household surveys and business data from public-sector records in special Research Data Centers in France, Germany, the Netherlands and UK. These are microdata at individual level, highly detailed; they cannot be publicly released, but access can be legally given for scientific and statistical research purposes.
Both confirmed researchers and PhD students are welcome to apply, and should do so in a country different from the one where they reside. There is a preference for comparative, cross-country projects. The deadline is 15th October 2013.
For more information, see the call for proposals on the DwB website.
This is part of a broader policy effort to improve researchers’ access to data in Europe, to enhance capacity to produce science-based understanding of society across the continent.
The “open data” movement is radically transforming policy-making. In the name of transparency and openness the UK, US and other governments are releasing large amounts of records. It is a way to hold the government to account: in UK for example, all lobbying efforts in the form of meetings with senior officers are now publicly released. Data also enable the public to make more informed decisions: for example, using apps from public transport services to plan their journeys, or tracking indicators of, say, crime or air pollution levels in their area to decide where to buy property. Data are provided as a free resource for all, and businesses may use them for profit.
The open data movement is not limited to the censuses and surveys produced by National Statistical Institutes (NSIs), the public-sector bodies traditionally in charge of collecting, storing and analyzing data for policy purposes. It extends to other administrations such as the Department for Work and Pensions or the Department for Education in the UK, which also gather and process data, though usually through a different process, not using questionnaires but rather registers.
Continue reading “Data in the public sector: Open data and research data”