The Brussels Privacy Symposium 2020 (Virtual)

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Research and the Protection of Personal Data Under the GDPR

About this event

The COVID-19 pandemic has brought to the fore the crucial role that data collection, analysis, sharing, and dissemination play for governments, academic institutions, and private sector businesses racing to advance research to help contain, mitigate and remedy the disease. It also illustrates that data protection safeguards are essential to build public trust for the swift adoption of data-based solutions that respect fundamental rights. But the effect of privacy and data protection laws on scientific research extends beyond the pandemic and healthcare. The interactions between data protection and research are complex, with privacy and data protection enhancing individuals’ trust and ensuring respect of fundamental rights and ethical standards, while at the same time creating friction for data collection and sharing across organizations and borders.

The EU General Data Protection Regulation (GDPR) provides a tailored framework for processing personal data for research purposes, which allows for differences in implementation at the Member State level and presents questions about the interpretation and implementation of issues such as the scope of research; repurposing personal data - including sensitive data; access of researchers to corporate databases; sharing data across international borders; and the use of data protection enhancing techniques such as key coding and pseudonymization. Other legal frameworks, including emerging US privacy laws, call for the creation of ethical review boards for data research in organizations, including businesses that have not traditionally adhered to ethical standards such as the Common Rule. In this year’s Brussels Privacy Symposium (which will take place online), leading ethicists, scientists, lawyers, and policymakers discuss the present and future of data protection in the context of scientific data-based research under the GDPR.

To view the full agenda & for more information visit FPF’s Brussels Privacy Symposium webpage

Sponsorships are available. For more information, please click here.

Panel Discussion Descriptions

Panel 1: Complex Interactions: the GDPR, Data Protection and Research

The GDPR provides safeguards and derogations relating to the processing of personal data for scientific research purposes. At the same time, the framework limits the collection of sensitive data and its sharing across organizations and national borders.

In an era when EU institutions and international organizations advocate for data philanthropy and the sharing of personal data for compelling public interest grounds, legal frameworks must strike a delicate balance between public interests and individual rights. How do experts assess the interactions between scientific progress and the protection of rights under the GDPR? What have the effects of GDPR been on research in academic and corporate settings? Against the backdrop of the COVID-19 pandemic, this session explores whether GDPR has facilitated or hindered data research for healthcare purposes as well as in a broader context.

Panel 2: Using Sensitive Data in Research to Counter (Hidden) Bias and Discrimination

Scientific research often depends on the broad collection, use, and sharing of special categories of data. In the context of COVID-19, organizations may study not only individuals’ health, but also data about the geolocation, proximity, genetics, biometrics, and racial and ethnic origins of entire populations. While research often entails the processing of sensitive data, and hence presents privacy risks, it can also unearth covert bias and discrimination (for example, in the context of education, credit, housing, criminal justice and more). In this session, experts discuss the scope of the definition of sensitive data as well as the rules that should apply to the processing of sensitive data in the research arena. How can researchers ensure data-based practices minimize privacy risks while at the same time not glossing over existing societal imbalances? What are the risks that methods such as differential privacy obfuscate underlying inequities? How will organizations use sensitive data to unearth and counter hidden bias and discrimination without abusing their access to such information? Where are the bounds of ethical data research in corporate environments, including healthcare, financial, advertising, and digital platforms?

Symposium Agenda

14:00-14:15 (CET) - Introduction from the co-hosts

  • Jules Polonetsky, FPF
  • Prof. Christopher Kuner, VUB

14:15-14:45 (CET) - Opening Keynote: Exploring the New EU Data Governance Act Proposal

  • Malte Breyer-Katzenberg, European Commission’s DG CONNECT
  • Cornelia Kutterer, Microsoft Corporation

14:45-15:45 (CET) - Complex Interactions: the GDPR, Data Protection and Research

The GDPR provides safeguards and derogations relating to the processing of personal data for scientific research purposes. At the same time, the framework limits the collection of sensitive data and its sharing across organizations and national borders.

In an era when EU institutions and international organizations advocate for data philanthropy and the sharing of personal data for compelling public interest grounds, legal frameworks must strike a delicate balance between public interests and individual rights. How do experts assess the interactions between scientific progress and the protection of rights under the GDPR? What have the effects of GDPR been on research in academic and corporate settings? Against the backdrop of the COVID-19 pandemic, this session explores whether GDPR has facilitated or hindered data research for healthcare purposes as well as in a broader context.

Moderator:

  • Gianclaudio Malgieri, Associate Professor EDHEC Augmented Law Institute (Lille); Affiliated Researcher LSTS VUB

Speakers:

  • Claire Gayrel, EDPS
  • Dara Hallinan, FIZ Karlsruhe - Leibniz Institute for Information Infrastructure
  • Ciara Staunton, School of Law, Middlesex University, London and Centre for Biomedicine, EURAC, Bolzano, Italy

15:45-16:00 (CET) - Break

16:00-17:00 (CET) - Using Sensitive Data in Research to Counter (Hidden) Bias and Discrimination

Scientific research often depends on the broad collection, use, and sharing of special categories of data. In the context of COVID-19, organizations may study not only individuals’ health, but also data about the geolocation, proximity, genetics, biometrics, and racial and ethnic origins of entire populations. While research often entails the processing of sensitive data, and hence presents privacy risks, it can also unearth covert bias and discrimination (for example, in the context of education, credit, housing, criminal justice and more). In this session, experts discuss the scope of the definition of sensitive data as well as the rules that should apply to the processing of sensitive data in the research arena. How can researchers ensure data based practices minimize privacy risks while at the same time not glossing over existing societal imbalances? What are the risks that methods such as differential privacy obfuscate underlying inequities? How will organizations use sensitive data to unearth and counter hidden bias and discrimination without abusing their access to such information? Where are the bounds of ethical data research in corporate environments, including healthcare, financial, advertising, and digital platforms?

Moderator:

  • Gabriela Zanfir-Fortuna, Senior Counsel FPF, Affiliated Researcher LSTS VUB

Speakers:

  • Elettra Ronchi, Organisation for Economic Co-operation and Development
  • Paul Quinn, VUB
  • Heng Xu, American University

17:00 - 17:15 - Closing Keynote

Dr. Wojciech Wiewiórowski, European Data Protection Supervisor

In its January 2020 Preliminary Opinion on data protection and scientific research, the EDPS recommends intensifying the dialogue between DPAs and ethical review boards for a common understanding of which activities qualify as scientific research, on codes of conduct for scientific research, and on closer alignment between EU research framework programs and data protection standards. In his keynote comments, the EDPS discusses the report and reflects on the day’s sessions.


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Date and time

Location

Online event

Organizer Brussels Privacy Hub, VUB + Future of Privacy Forum

Organizer of The Brussels Privacy Symposium 2020 (Virtual)

Brussels Privacy Hub, VUB

The Brussels Privacy Hub (BPH) is an academic privacy research centre with a global focus. As an entity of the Vrije Universiteit Brussel (Free University of Brussels or VUB), it uses its location in Brussels, the capital of Europe, to engage EU policymakers, data protection regulators, the private sector, and NGOs, and to produce innovative, cutting-edge research on important questions of data protection and privacy law and policy. Brussels is where key decisions are taken on data protection in the European Union, and EU rules set the standard for data protection and privacy law around the world. For more information, visit: www.brusselsprivacyhub.eu

Future of Privacy Forum

The Future of Privacy Forum is a non-profit organization that serves as a catalyst for privacy leadership and scholarship, advancing principled data practices in support of emerging technologies. For more information, visit: www.fpf.org

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