June 2014, Dublin: After consulting widely with data researchers across Insight, it emerged that there was an organisation-wide concern about the place of the citizen in data research. Data ownership has not been clearly defined. Values vary widely across the many stakeholders, such as academics, applied health researchers, business analysts and social media providers. As Insight operates at the interface of these and many other groups, its researchers felt that an agreed set of values for data ownership, rights and usage was a worthy goal. In June 2014, the Insight Magna Carta for Data Project was born.
February 2015, Brussels: An Insight delegation presented a discussion document, Towards a Magna Carta for Data, in Brussels, to start an EU level conversation about data ethics. The aim was to lift the conversation above the level of data privacy and protection, and to encourage policy makers to look at the rights of citizens in balance with the very real benefits that responsible data research can return for those same citizens. You can read a report here.
June 2015, Brussels: Insight participated in a Day of Action on Data for Health and Science that focused on the specific ethics challenges faced by patients, researchers and healthcare providers when capturing, retaining and using patient data. Insight worked with the European network BBMRI (Biobanking and Biomolecular Resources Research Infrastructure) to organise the Day of Action: BBMRI plans to continue the conversation in Dublin later in the year.
September 2015, Dublin: Ongoing consultations within Insight identified the need to broaden the conversation beyond the business, health science and computer science community, and to draw in perspectives from social science and the humanities. As part of the Predict Conference in the RDS, Insight will hold a data ethics workshop: Towards a Magna Carta for Data to explore more areas that a Magna Carta for Data should address, and to frame questions for further discussion. [link]
November 2015, Oxford: Prof Barry O’Sullivan presents the concept of the Magna Carta for Data at a conference hosted by the Alan Turing Institute in Oxford University.
January 2016, Cork: Insight@UCC hosted the BBMRI-ERIC for a day-long seminar about bio-banking. BBMRI-ERIC made a case for Ireland joining the biobanking network. The seminar was the first Irish showcase of an EU research infrastructure like BBMRI and brought representatives from biobanking, industry, academia, law and data analytics together to discuss the contributions of their respective sectors to the improvement of healthcare, from prevention to treatment and drug development.
The event also highlighted the key role that biobanks play in providing resources for health research, and it demonstrated how Ireland could benefit from participating in one of the largest health infrastructures in Europe, BBMRI-ERIC. The seminar examined how applying data science to this kind of health data is yielding exciting results.
May 2016, Insight: An internal data ethics consultation process begins. The Data Ethics Case Studies Project emerges as a way to make a real contribution to the field of data research ethics.
Sept 2016, Insight: The case studies project begins to take shape. The communications team is assigned to direct and manage the project. A consultation process within and outside Insight begins.
January 2017, Insight: Case study gathering and compiling begins.
June 2017, Insight: The need for a website to house the case studies and to host a wider ethical discussion is identified. A process is put in place with an estimated launch date of October 2017.