More on Ethical and Legal Issues in Big Data Research
Author
Beatrice Huber
NRP 75 “Big Data”
On 19 June experts met in Basel at the second symposium about “Ethical and Legal Issues in Big Data Research”.
Big Data are more and more used in science, the humanities and medicine and to generate novel evidence-based findings across multiple disciplines. However, research using Big Data also raises important ethical and legal questions. The aim of the symposium was to explore some of the most pressing ethical issues, including anonymization, protection of human subjects, fairness and data protection. The symposium was divided into two parts. In the first part social scientists discussed ethical and legal challenges raising from the use of Big Data in their field. In the second part lawyers provided their view on the topic.
The symposium was opened by Professor Bernice Simone Elger, Head of the Institute for Biomedical Ethics, University of Basel, and PI of the NRP 75 project “Regulating Big Data research: A new frontier”.
In the keynote speech Jenny Krutzinna, post-doctoral researcher at the Center for Research on Discretion and Paternalism, University of Bergen, Norway, spoke about the specialties of biomedical Big Data. Health is not really a consumer choice and there is some urgency to address the ever-rising costs in the healthcare system. Due to the nature and origin of the data the potential for harm is given. There are conflicts between individual and public interest. And new technologies lead to new market forces. Jenny Krutzinna pleaded for an ethical approach and presented three arguments: Context matters because data do not exist without context. Protection matters. And purpose matters. In order for data protection to be well regulated, she asked the following question: What and who are we afraid of? Jenny Krutzinna pointed also out the risk of overpromise as she noticed a lot of misunderstanding e.g. what genetics is and what it can. It is not deterministic but probabilistic. A comprehensive policy framework is needed because global problems require a global approach with cultural sensitivity. Regulation must be geared to the future.
Big Data in Economics
In the second speech of the day Professor Ulrich Matter from the School of Economics and Political Science at the University of St. Gallen talked about mapping the online media sphere. First, he pointed out that Big Data research in his field is complementary to and not substitute for more traditional approaches. Big data gives the opportunity to find patters that are hard to detect without Big Data. But it is also a challenge to handle the large and unstructured data. The online media sphere is interesting for economists because the ownership of media outlets matters for political and social outcomes. Ulrich Matter presented a study in which they examined – by analysing online media in the US and the UK – the decisions of media which news they published. Non-publication had to be an active decision. One insight was that ownership seems to matter.
Sociology
Professor Sophie Mützel from the Department of Sociology at the University of Lucerne and PI of the NRP 75 project “Confronting Big Data: Methods and skills for a 21st-century sociology” spoke about the opportunities of Big Data for sociology. For her, it is the richness and breadth of new Big Data, the availability of old Big Data, e.g. in digitized archives, and the possibility to answer old questions in new ways. In the last 60 years sociologists made research with survey data and government statistics. Important keywords were representative samples, independent observations, regression analyses, and statistical significance. Or they did inductive-iterative research. Sophie Mützel pointed out that instead of focusing on a “Big Data revolution” perhaps it is time to focus on an “all data revolution”. The rise of Big Data poses new opportunities but also new challenges for sociology. New types of data (old and new) make new methods necessary to analyse such data.
Communication and Media Studies
Right after the lunch break with lively discussion Thomas Häussler, senior scientist at the Institute of Communication and Media Studies, University of Bern, reported about two “tectonic” shifts in communication sciences due to the digitisation. First the object of study – public communications – changes. Formerly simple consumers in the media system are also becoming producers. So, he spoke about a “hybrid media system”. Second the approaches to studying communications are changing. The sources of digital communication data are still archives, but also the public web and social media. The big challenge is with the public web. Compared to that social media can be much better handled. Thomas Häussler presented his work on the topic of climate change with the hyperlink network Switzerland which has a lot of players from abroad.
Second part: Legal issues
In the second part it was time for the lawyers. Thomas Gruberski, lawyer at the University Hospital Basel, spoke about legal implications regarding Big Data research with a focus on biomedical data. He discussed some important questions. For instance, whether traditional clinical trials still work when we have personalized medicine. The patient himself becomes his control group. But how can we measure the effect and side effects? When does payer solidarity end with personalised medicine?
Bruno Bäriswyl, Data Protection Officer of the Canton Zurich, presented the privacy framework for research cooperation CH‒EU. Personal data is all information relating to an identified or identifiable person. The legal framework applicable depends on where the controller is. Within Switzerland there are also cantonal privacy guidelines. In Switzerland, the old data protection law is still valid, while the new one is in the legislative process – in contrast to the GDPR, which is already in force.
The last talk from Professor Silvia Salardi of the School of Law, University of Milano-Bicocca, Italy was about “From privacy to data protection: scientific research with Big Data through the lens of the GDPR”. Privacy was originally only the right to be let alone but the legal meaning of privacy is a work in progress. It is also about protection of life choices and protection from being objectified and simplified and judged out of context. The current European rules on data protection are the GDPR and the Council of Europe’s Convention 108+ for the protection of individuals with regard to the processing of personal data. The GDPR is a challenge for research. After all, a certain number of exceptions are possible for research.