United Nations Perspectives on the Right to Privacy
ISC will organise a briefing entitled “United Nations perspectives the Right to Privacy” that will occur online on 3 March 2021 at 15h00CET. The UN Human Rights Council’s inaugural Special Rapporteur on the right to privacy, Prof. Joseph Cannataci, will deliver the keynote address on the right to privacy, followed by a series of interventions by notable discussants.
The meeting objective will be to consider the impact of data protection regulation on the use of sensitive personal data for medical research and improved health outcomes globally. Success will rely on situating the global policy and regulatory environment within a human rights framework that respects human rights while supporting the exchange of and access to relevant data. This is particularly important for emerging economies and will facilitate international research collaborations to achieve the United Nations Sustainable Development Goals and other policy objectives.
Privacy enables the enjoyment of other rights: the free development and expression of an individual’s personality, identity and beliefs, and their ability to participate in political, economic, social and cultural life. The Special Rapporteur is mandated to promote and protect the right to privacy by:
• Reviewing government policies and laws on the interception of digital communications and collection of personal data
• Identifying actions that intrude on privacy without compelling justification
• Assisting governments in developing best practices to bring global surveillance under the rule of law
• Articulating private sector responsibilities to respect human rights
• Helping ensure national procedures and laws are consistent with international human rights obligations
The Special Rapporteur for privacy has provided recommendations on privacy promotion concerning:
• Data protection and surveillance in relation to COVID-19 and contact tracing
• Security and surveillance
• Open Data and Big Data
• Privacy, technology and other human rights from a gender perspective
His 2021 annual report to the Human Rights Council provides ‘Recommendations on privacy protection for the development and operation of artificial intelligence solutions’ and ‘Principles and recommendations on the right to privacy of children’. All reports are available at https://www.ohchr.org/EN/Issues/Privacy/SR/Pages/AnnualReports.aspx
Speakers will include:
Declan Kirane ISC Intelligence in Science, Belgium
Eva Kaili Member of the European Parliament, Belgium
Didier Reynders European Commissioner for Justice, Belgium
Joseph Cannataci United Nations Special Rapporteur on the Right to Privacy, University of Groningen, Netherlands, and the University of Malta, Malta (Keynote)
Kurt Zatloukal Medical University of Graz, Austria
José Paulo Esperança Vice President of the Foundation for Science and Technology (FCT), Portugal
Immaculate Kassait Data Protection Commissioner, Kenya
Robert Eiss National Institutes of Health, Washington, USA
Marietjie Botes University of KwaZulu-Nata, South Africa
Karen Holmes Genuity Science, Ireland
Zeinab Osman Director-General, National Centre for Research, Sudan
Rita Lawlor Fellow of Information Privacy (IAPP)
Didier ReyndersEuropean Commissioner for Justice, Belgium
He serves as European Commissioner for Justice since 2019. He held various positions in public institutions before becoming a member of the House in 1992. He was a minister without interruption from 1999 to 2019, until resigning to become Belgian European Commissioner.
He served as Federal Minister of Finance until December 2011 in six different governments, then Federal Minister for Foreign Affairs, Trade Foreign Affairs and European Affairs in two governments. Following the government crisis of December 2018, he was also appointed to the post of Minister of Defense until November 2019.
Eva KAILIGreek S&D Delegation in the European Parliament
Eva KAILI is a Member of the European Parliament, part of the Hellenic S&D Delegation
She is the Chair of the Future of Science and Technology Panel in the European Parliament (STOA), Member of the Industry, Research and Energy committee (ITRE), of the Economic and monetary affairs committee (ECON) and of the Budgets committee (BUDG).
In her capacity, she has been working intensively on promoting innovation as a driving force of the establishment of the European Digital Single Market. She has been the draftsperson of multiple pieces of legislation in the fields of blockchain technology, online platforms, big data, fintech, AI and cybersecurity, as well as the ITRE draftsperson on Juncker plan EFSI2 and more recently the Invest EU program.
She is the founder of the Future Forum, a network of influential politicians, officials and public figures promoting innovation.
As a high ranking and influential MEP she is often invited to talk for her work in important conferences and academic institutions world widely.
She has also been the Chair of the Delegation to the NATO PA in the European Parliament, focusing on Defence and Security of Europe.
Prior to that, she has been elected as a Member of the Hellenic Parliament (2007-2012), with the PanHellenic Socialist Movement (PASOK).
She also worked as a journalist and newscaster prior to her political career.
She holds a Bachelor degree in Architecture and Civil Engineering, and Postgraduate degree in European Politics.
Immaculate KassaitData Protection Commissioner, Kenya
She is the First Data Commissioner, Office of the Data Protection Commissioner, Republic of Kenya.
Ms. Kassait is an advocate of the high court of Kenya. She holds a Global Executive Masters of Business Administration from United States International University, Post Graduate Diploma in Law KSL, LLB (Honours) from Makerere University. She is also an accredited Facilitator in Building Resources in Elections Democracy and Governance.
Previously she worked at the Independent Electoral and Boundaries Commission (IEBC) for close to 11 years as a director; Voter Education Partnerships and Communication and; Voter Registration and Electoral Operations. She has also worked at Institute for Education in Democracy (IED) and Federation of Women Lawyers (FIDA Kenya).
Ms. Kassait is a member of the Law Society of Kenya, East Africa Law Society and FIDA Kenya.
Joe Cannataci United Nations Special Rapporteur on the Right to Privacy, University of Groningen, Netherlands, and the University of Malta, MaltaJoe CannataciUnited Nations Special Rapporteur on the Right to Privacy, University of Groningen, Netherlands, and the University of Malta, Malta
Joe Cannataci was appointed as the first ever UN Special Rapporteur on Privacy in 2015, following the Snowden revelations about mass surveillance. His UN mandate was renewed in 2018 until August 2021. He is head of the Department of Information Policy & Governance at the Faculty of Media & Knowledge Sciences of the University of Malta. He also co-founded and continues as Co-director (on a part-time basis), of STeP, the Security, Technology & e-Privacy Research Group at the University of Groningen in the Netherlands, where he is Full Professor, holding the Chair of European Information Policy & Technology Law . A Fellow of the British Computer Society (FBCS) and UK Chartered Information Technology Professional (CITP), his law background meets his techie side as a Full Professor (adjunct) at the Security Research Institute & School of Computer and Security Science, Edith Cowan University Australia, as well as a Senior Fellow and Associate Researcher at the CNAM Security-Defense-Intelligence Department in Paris, France. His past roles include Vice-Chairman/Chairman of Council of Europe’s (CoE) Commmittee of Experts on Data Protection 1992-1998, Working Parties on: Data Protection and New technologies (1995-2000); Data Protection & Insurance (1994-1998); CoE Rapporteur on Data Protection and Police (1993; 2010; 2012); CoE Expert Consultant on Data Protection and Cybercrime (2012-2014); UNESCO Expert Consultant on Privacy & Transparency on the Internet (2015); Scientific Co-ordinator of multiple EU FP7 & H2020 research projects focussing on privacy. He has designed and led several EU-supported research projects, both as PI and overall scientific co-ordinator, since 1986. Of these more than ten projects were awarded in the SEC (security) research area since 2010 and have included CONSENT, SMART, RESPECT, MAPPING, CARISMAND, SIPP, INGRESS and JP-COOPS. He. He was decorated by the Republic of France as Officier de l’Ordre de Palmes Academiques (2002). His latest books include The Individual and Privacy (Routledge March 2015), Privacy, Free Expression & Transparency (UNESCO co-editor 2016-2017) and Handling and Exchanging Electronic Evidence across Europe (co-ed. Springer 2018), “Essential Codes – International & European Data Protection Law” Gert Vermeulen & Willem Debeuckelaere (eds.) co-edited by: Joe Cannataci, Jean-Philippe Walter, Sophie Kwasny, Giovanni Buttarelli, Wojciech Wiewiórowski, Bruno Gencarelli, Mario Oetheimer (Larcier, 2018); Changing Communities, Changing Policing, Jeanne-Pia Mifsud Bonnici & Joseph A. Cannataci (eds)., (NWV, Austria, 2018).
José Paulo EsperançaVice President of the Foundation for Science and Technology (FCT), Portugal
José Paulo Esperança is the Vice President of the Foundation for Science and Technology (FCT). He is full professor of Finance and former Dean of the ISCTE Business School as well as former Pro-Rector for International Relations and Entrepreneurship at ISCTE-IUL. He cofounded AUDAX-ISCTE, an associated centre focused on entrepreneurship and family business and BGI, a new ventures accelerator.
Karen HolmesVP, Legal & Privacy, Genuity Science
Karen is Vice President and Head of Legal and Data Protection at Genuity Science. Genuity Science is an international genomics data, analytics and insights organisation supporting drug target and biomarker discovery programs aimed at improving the quality of life for patients around the world. Karen is an Irish-qualified lawyer with 20 years’ experience in the international life sciences industry and IT sector. Karen joined Genuity Science in 2017 and oversees all commercial, transactional and data protection related activities at Genuity, including Genuity’s Global Data Stewardship Programme which ensures that the highest data protection, ethical and security standards are in place when conducting our genomic research studies. Karen is a frequent speaker on topics relating to personal data in the field of genomics and evolving regulation in this space.
Karina AngelievaDeputy Minister of Education and Science of Bulgaria
Karina Angelieva is a former Counselor, Head of Sector Education and Research at the Permanent Representation of the Republic of Bulgaria to the EU. She holds Master degrees in European integration and in Contemporary History from Sofia University “St. Kliment Ohridski”. Previous positions held include Director-General of Structural Funds and International Educational Programs at the Bulgarian Ministry of Education and Science and Director of the Joint Innovation Centre at the Bulgarian Academy of Sciences (JIC – BAS). Ms. Angelieva is a founder of the Club of Young Scientists in Bulgaria and has been in charge of the coordination of National contact points’ network for the EU Framework Program for Research and Innovation for 10 years. On 1 September 2018 she was appointed Deputy Minister of Education and Science of Bulgaria.
As a longtime employee of the Ministry of Education and Science in the period 2002-2009, Ms. Angelieva was involved in the coordination of the 6th EU Framework Program for Research and Technological Development, overseeing the national contact network, organizing information days and training for representatives of academic and business sector to boost their participation in the program. Karina Angelieva was the head of projects under the PHARE program on the topic of overall modernization of the research system in Bulgaria. She provided analysis and recommendations for the introduction of modern European practices in program financing on a national level. Ms. Angelieva participated in various working groups, including the group tasked with the preparation of the National Charter for SMEs and of the methodology for the Technology Transfer centers and evaluation of innovations in Bulgaria as a preparation for the participation in the OP “Competitiveness”.
Karina Angelieva has extensive expertise and practical experience in the field of research and innovation, including the coordination, preparation and management of projects related to the development and deployment of new applications and services in the field of technology transfer, inter-sectoral partnership “industry-academy” and others. As a former director of the JIC at the Bulgarian Academy of Sciences (BAS), she led the innovation policy of the Academy and contributed to the establishment of an effective cooperation between BAS and the industrial sector. She also guided the participation of JIC in the Bulgarian consortium of Enterprise Europe Network.
Deputy Minister Angelieva is a member of the Commission Board of the Bulgarian-American Commission for Educational Exchange (Bulgarian Fulbright Commission). She is devoted to promoting science communication in Bulgaria and has been the driving force behind the success of the 31st EU Contest for Young Scientists (EUCYS) held Sofia in 2019. On her initiative the Bulgarian Science Portal was launched in 2019 as a step towards defragmenting the science information and communication landscape on a national level.
Kurt ZatloukalDirector of BBMRI.at
Kurt Zatloukal, M.D., is Professor of Pathology and head of the Diagnostics and Research Center for Molecular Biomedicine at the Medical University Graz. His research work focuses on the molecular pathology of metabolic liver diseases and cancer as well as molecular diagnostics. He is working on the development of biobanking-related technologies and machine learning approaches for digital pathology. He coordinated the preparatory phase of the European biobanking and biomolecular research infrastructure (BBMRI) and is now director of its Austrian national node. In this context solutions have been developed for providing access to quality controlled human biological samples and medical data for research and innovation.
Marietjie Botes Attorney, bioethicist, academic and legal designer in the art of law, science and technologyMarietjie BotesAttorney, bioethicist, academic and legal designer in the art of law, science and technology
Marietjie has been practising as an attorney since 2001 and holds the degrees of BProc, LLB, LLM with specialisation in Intellectual Property Law and an LLD with specialisation in Biotechnology Law. During her years as partner at Dyason Inc in Pretoria she drafted, reviewed and advised on Health-tech, Fin-tech and Bio-tech Contracts, advised on all legal aspects involving Biotechnology, litigated and gave legal advice in the fields of Health Care, Life Sciences and Insurance.
In 2019 Marietjie has joined the University of Kwa-Zulu Natal as a postdoctoral researcher in the Health Law and Bioethics research group lead by Prof Thaldar where she specifically focusses on genetic research regulation, privacy issues relating to health information, data sharing and commercialisation, gene editing, stem cell therapy ethics and research regulations. Marietjie also teaches Medical Law, Human Rights and Ethical Theories to medical students at the School of Health Sciences, University of Kwa-Zulu Natal.
Since the COVID-19 outbreak in December 2019 Marietjie also became intensively involved in pandemic preparedness and management research and was appointment by the National Research Foundation (NRF), the Department of Planning, Monitoring and Evaluation (DPME) and Government Technical Advisory Centre (GTAC) to be part of the Expert Groups leading the development of the COVID-19 County Report on the implementation of measures to combat COVID-19 in South Africa. She is specifically authoring and leading the Human Rights and Legal approach to Government leadership, governance, institutional arrangements and state capacity in responding to COVID-19.
In February 2020 Marietjie was also invited by the Academy of Science of South Africa (ASSAf) to serve on an Academy consensus study panel chaired by Professor Michael Pepper, looking into the Ethical, Legal and Social Issues related to Gene Therapy: A South African perspective. As part of this illustrious panel Marietjie focusses specifically on gene therapy, gene editing and related technologies, intergenerational justice and issues relating to the commercialisation of and Intellectual Property rights in cell and gene therapies.
In April 2021 she will be joining the IRiSC Sociotechnical Cybersecurity Interdisciplinary Research Group at the SnT – Interdisciplinary Centre for Security, Reliability and Trust at the University of Luxembourg and move to Luxembourg City.
Rita T. LawlorPh.D., CIPP/E, CIPM Fellow of Information Privacy (IAPP)
Rita T. Lawlor is a Computer Science graduate of Trinity College Dublin with a doctorate in Oncological Pathology from the University of Verona where she is co-founder of the ARC-Net (www.arc-net.it) applied cancer research centre and is director of the ARC-Net biobank coordinating research activities. She is an IAPP Fellow of Information Privacy (International Association of Privacy Professionals) with CIPP/E and CIPM certifications for European data protection and is chair of the ISBER GDPR Task Force. She is a member of the management team of ICGC-ARGO, International Cancer Genome Consortium to accelerate research in genomic oncology and is a member of the board of the Italian Foundation on Pancreas Diseases (FIMP).
She is past president of ESBB, the European, Middle Eastern and African Society for Biopreservation and Biobanking (www.esbb.org) and a former director of ISBER, International Society for Biological and Environmental Repositories (www.isber.org). She is a member of the steering committee of BC-NET (Biobank Cohort Network of Low Middle Income Countries) of IARC (International Association for Research on Cancer). She co-authored the IARC Technical Publication on Common Minimum Technical Standards and Protocols for Biobanks Dedicated to Cancer Research.
Her current research interests are in molecular diagnostic markers and therapeutic targets and the role of cancer heterogeneity and molecular characterization of samples in the application of individualized medicine.
Robert Eiss Senior global health adviser to the Director of the National Institutes of Health (NIH) and Fogarty International CenterRobert EissSenior global health adviser to the Director of the National Institutes of Health (NIH) and Fogarty International Center
Robert Eiss serves as senior global health adviser to the Director of the National Institutes of Health (NIH) and Fogarty International Center. At NIH, Mr. Eiss assumed lead responsibility for the Fogarty International Center’s first long-range plan, which reoriented its programs to address infectious and non-communicable disease research and training needs of low-and middle-income countries. Mr. Eiss has held executive management posts at the White House Office of National Drug Control Policy (ONDCP) and at an international NGO established by the Rockefeller Foundation to improve access to innovative medicines. At ONDCP, he served as director of planning and budget, involving budgetary oversight of national drug control agencies, establishment of a system of performance measures to monitor program effectiveness, and the management of a research portfolio on illicit drug consumption and consequences. As CEO of an international NGO, he promoted innovative and strategic management of intellectual property to speed the development of medical products that reduce global health disparities. Mr. Eiss holds degrees from the University of Maryland at College Park and Oxford University