HS2017: Ethical and Legal Regulation of Big Data Research
Estimates suggest that 90% of the current amount of digital information has only just been produced in the past four years. This is not surprising given the rapid expansion of information technology and the internet into various domains of everyday life. Data is therefore not only produced at higher velocity, but also data types and data quality vary increasingly and generates huge data sets that can be linked via the internet. This phenomenon is known as “Big Data”.
In the field of health research, not only digitalized medical records and biomedical data but also health relevant data generated through mobile electronic devices and social media has opened up new ways to gain knowledge about the well-being and behavior of various populations. However, in accessing, exploring and examining vast amounts of data, a number of questions arise regarding potential harms and benefits of this kind of research:
What new insights can Big Data research provide? What are their limitations? Who owns the data? How can an individual’s privacy be protected in a digitally interconnected world? How can informed consent be realized regarding use, re-use and storage of personal data? Should Big Data research be regarded as human subject research?
This Autumn Semester’s Contemporary Debates aims to explore these and other questions posed by Big Data research from multiple disciplinary perspectives. We therefore invited eight international experts from the fields of Law, Ethics, Medicine and Informatics to give a talk on their work related to Big Data research. For a fruitful exchange, participants are encouraged to engage in a lively discussion following each talk.