Witness Webinar: Can Governments Respond to the COVID-19 Pandemic and Still Respect Personal Privacy?

Convenor: Victoria Lemieux, Associate Professor, School of Information and Co-Lead, Blockchain@UBC

The objective of this Witness Webinar is to bring together experts on ethical, legal, and social implications of public health technologies to 1) explore the challenges, risks, and benefits of deploying novel technologies in the response to COVID-19, 2) open a dialogue with public health officials and the public about the challenges, risks and benefits, and 3) use the exploration and dialogue to write a public policy paper that lays out the challenges, risks and benefits, and framework that can be used in public policy decision-making and technology design.

Developed in the 1990s, witness seminars began as a novel approach to oral history and evolved into a gathering of numerous participants who are recorded simultaneously and able to interact with each other and with the seminar convenor. Witness Seminars produce group discussions on topics of special interest and make collective oral history materials available for widespread use.

For this witness seminar, academics, healthcare practitioners, policy-makers, and members of civil society organizations will meet online using the UBC Zoom platform. Joining instructions will be sent out one day in advance of the seminar together with the final program and a list of all the attendees. Participants unable to meet synchronously are invited to prepare a 5 minute video clip presenting a perspective on the key question, i.e., Can Governments Respond to the COVID-19 Pandemic and Still Respect Personal Privacy? Participants will also be able to submit questions or comments via Twitter using the hashtag #COVIDWitness.

Those interested in participating should register by sending their name, email address, and organizational affiliation (if any) to info@blockchainubc.ca

Style of Interaction: Interactions are expected to be informal in nature and spontaneous. We consider the Witness Seminar format to be a form of open peer-review, with all remarks and opinions immediately subject to rejoinder, agreement, or dispute from others. We discourage participants from bringing prepared scripts, and we do not (except in special circumstances), allow slides or other visual material to be shown, simply because of the disruption this can introduce to the meeting.

Publication of the Witness Seminar: The complete proceedings will be recorded and transcribed and made available as a public document for use in future publications by anyone wishing to use the material. Submitted video presentations also will be transcribed and preserved as part of the archival record. All opinions expressed during the seminar will published, unless a participant specifically asks us to exclude a remark, for example, on the grounds of confidentiality.

Editorial Process: For legal and copyright reasons, all participants will take responsibility for their own remarks, the copyright of which is assigned to UBC. We will send a copy of the unedited transcript to all participants for them to amend their own, and only their own, contributions. Minor comments will be incorporated into the master text. At this stage we will not allow extensive alterations or any corrections of others’ contributions. We will make use of footnotes to accommodate further comments, information and remarks. Participants may be asked for additional details, assistance with technical terminology or references to external material or publication for the sake of clarity.

Please contact Victoria Lemieux, Associate Professor, School of Information and Co-Lead, Blockchain@UBC (v.lemieux@ubc.ca) for additional information.

Opening Remarks from Federal Minister for Digital Government

The Honourable Joyce Murray P.C., M.P.

The Honourable Joyce Murray was first elected as the Member of Parliament for Vancouver Quadra in 2008. Minister Murray is a dedicated community leader with a deep commitment to environmental sustainability and democratic engagement. Her federal political career follows a 25-year career building an international reforestation company and four years serving in the Cabinet of the Government of British Columbia.

Minister Murray is a thought leader, driving progressive new policies in government. Whether advocating for strong, smart environmental measures such as a tanker ban on British Columbia’s north coast or for the legalization and strict regulation of cannabis, her ability to envision and deliver on bold new ideas comes from her depth of experience in politics and business. Her interest in environmental sustainability was evident in her master’s thesis on global warming, which contributed to her receiving the Simon Fraser University Dean’s Convocation Medal for top MBA graduate of 1992.

Lead Witnesses

Ann Cavoukian

Dr. Ann Cavoukian is recognized as one of the world’s leading privacy experts. Dr. Cavoukian served an unprecedented three terms as the Information & Privacy Commissioner of Ontario, Canada. There she created Privacy by Design, a framework that seeks to proactively embed privacy into the design specifications of information technologies, networked infrastructure and business practices, thereby achieving the strongest protection possible. In 2010, International Privacy Regulators unanimously passed a Resolution recognizing Privacy by Design as an International Standard. Since then, PbD has been translated into 40 languages! In 2018, PbD was included in a sweeping new law in the EU: the General Data Protection Regulation.

Dr. Cavoukian is now the Executive Director of the Global Privacy & Security by Design Centre. She is also a Senior Fellow of the Ted Rogers Leadership Centre at Ryerson University, and a Faculty Fellow of the Center for Law, Science & Innovation at the Sandra Day O’Connor College of Law at Arizona State University.

Lili Liu

Lili Liu is Professor and Dean of Applied Health Sciences at the University of Waterloo. She earned her BSc in Occupational Therapy and MSc and PhD in Rehabilitation Science at McGill University. She is an AGE-WELL network investigator. Her research examines user adoption and acceptance of technologies by older adults and their care partners to maintain one’s ability to live in the community. She is conducting national research projects with persons living with dementia on topics such as digital storytelling, and strategies to mitigate risks of going missing.

Noelannah Neubauer

Noelannah Neubauer is a Postdoctoral Fellow in the Faculty of Applied Health Sciences at the University of Waterloo and is an MScOT student at the University of Alberta. She earned her BHK and MSc in Human Kinetics at UBC Okanagan, and her PhD in Rehabilitation Science at the University of Alberta. She is affiliated with AGE-WELL, and is the co-founder of the International Consortium on Dementia and Wayfinding. Her present research examines approaches to mitigate the risks of going missing, and the application of self-sovereign identity among missing persons data.

Steve Magennis

Steve Magennis, former Senior Director at Avanade is a skilled technology executive and leader who has been at the forefront of cloud, AI, and digital transformation at Microsoft, Accenture and Fortune 100 clients throughout his career. He is deeply connected to the evolution of decentralized architectures and the advancement of cryptographic identity that is changing the way enterprises and governments approach entrenched business and social problems.

Kohei Kurihara

Kohei Kurihara is Chief Marketing Officer at CollaboGate, and President of Tokyo Chapter, Government Blockchain Association. Kohei has several experiences at blockchain spaces, and leading local community such as Government Blockchain Association in Tokyo. At CollaboGate, provide the blockchain ID authentication service based on privacy orientation. And he has established privacy by design working group practices which is democratic community for privacy based data society.

Chandana Unnithan

Dr Chandana Unnithan (PhD, MbusComputing, MBA) is a professor in applied public health informatics from Torrens University Australia; and represents Australia in the United Nations COPUOS as a digital health expert. She is also a member of Space and Global Health Expert group of the UNOOSA and an appointed expert in the WHO Digital Health Group. She is on the medical research advisory board of Rapid Response Revival, an Australian firm that has developed the smallest defibrillator for mobile phones. In Canada, she is currently CTO/CIO for Lifeguard Digital Health, a digital health company that has built a pioneering application for supporting emergency services during the opioid crisis, and is in the process of developing multiple public health crises management applications.  She is also on the advisory committee of MyPDx – a project from Canada’s Digital Technology Supercluster, aimed at building a novel blockchain solution that leverages the open source blockchain framework, to enable privacy preserving and secure sharing of personal health data.

Her expertise in digital health (encompassing IoT, AI, Health Informatics, geo-spatial/ remote sensing technologies, blockchain in health) was established over 15+ years in pioneering / implementing innovative technological solutions in large public hospitals in Australia, while and also being a professor in applied public health informatics. She is extensively published with over 100 peer reviewed scientific papers and is an invited keynote speaker/panelist at international conferences in Australia, Canada, USA and Europe.

Nadia Diakun-Thibault

Nadia Diakun-Thibault is CEO and Founder of PanSophX Inc., a consultancy firm advising on cybersecurity, cyber resilience, and blockchain; and CEO of PharmOrchard, which is developing a create a secure environment for the storage and analysis of healthcare information by using blockchain technology as an effective solution to address the privacy and security concerns of the stakeholders. She held an Order-in-Council appointment, Province of Ontario Commissioner with the Ontario Advocacy Commission.  Her federal government experience spans security intelligence, innovation, and public policy. In 2016,  co-authored a paper entitled Blockhain and Health IT: Algorithms, Privacy and Data which was ranked first among the 15 finalists of the ONC HealthIT Blockchain Challenge 2016.

Toby Mendel

Toby Mendel is the founder and Executive Director of the Centre for Law and Democracy, a Canadian-based international human rights NGO that provides legal and capacity building expertise regarding foundational rights for democracy, including the right to information, freedom of expression, the right to participate and the rights to assembly and association. Prior to that, he was for over 12 years Senior Director for Law at ARTICLE 19, a human rights NGO focusing on freedom of expression and the right to information. He has collaborated extensively with inter-governmental actors working in these areas – including the World Bank, UNESCO, the UN and other special international rapporteurs on freedom of expression, the OSCE and the Council of Europe – as well as numerous governments and NGOs in countries all over the world. His work spans a range of areas of legal work, including law reform, litigation, research and publications, training, advocacy and capacity building. He has published extensively on a range of freedom of expression, right to information, communication rights and refugee issues. Before joining ARTICLE 19, he worked as a senior human rights consultant with Oxfam Canada and as a human rights policy analyst at the Canadian International Development Agency (CIDA).

Robin Renwick

Robin currently forms part of the Applied Research & Innovation team at Trilateral Research. He is the research lead for Trilateral on the European Commission H2020 project SOTER, which is tasked with developing a biometric identification and authentication digital on-boarding platform for the financial services sector. Trilateral leads the privacy, data protection, and ethical impact assessments, as well as the security risk assessment. Robin has developed an interdisciplinary research background; concerned mostly with the triumvirate of networks, technology, and society. His most recent research focused on the interface between privacy and blockchain technology; a boundary theory-based study of varied perspectives as told by active participants in the blockchain ecosystem. He is a member of the ISO/TC 307 blockchain and distributed ledger technologies standardisation efforts, and a member of CEN/CLC JTC 19 – Identity Management. Robin holds a PhD from Queen’s University Belfast.

Holly Longstaff

Holly Long staff is the Director of Privacy and Access at PHSA Research and New Initiatives, Provincial Health Services Authority. Holly is responsible for guiding the development, recommendation and implementation of innovative approaches to privacy policy and practice to build accountable information stewardship and privacy conscious practices that enable the execution of PHSA’s expanded mandate and the conduct of health research. She advises on the privacy requirements relating to new and expanded provincial initiatives working closely with PHSA’s Information, Access and Privacy, and Legal Services teams. She also provides leadership in developing and implementing governance mechanisms to enable nimble, multidisciplinary review of privacy and security requirements for new and expanded initiatives and research, including province-wide platforms and systems, digital and information technologies, and data access/sharing. Holly is a PhD level trained ethicist and research consultant. She serves as the ethicist on the BC Cancer Research Ethics Board and a US-based IRB. She has worked as a consultant for Health Canada, the Public Health Agency of Canada, and the CIHR Ethics Office and her work has been published in a variety of journals including CMAJ, Trends in Neurosciences and Cell Stem Cell.

Yann Joly

Yann Joly, Ph.D. (DCL), FCAHS, Ad.E. is the Research Director of the Centre of Genomics and Policy (CGP). He is an Associate Professor at the Faculty of Medicine, Department of Human Genetics cross-appointed at the Bioethics Unit, at McGill University. He was named advocatus emeritus by the Quebec Bar in 2012 and Fellow of the Canadian Academy of Health Sciences in 2017.

Prof. Joly is a member of the Canadian Commission for UNESCO (CCU) Sectoral Commission for Natural, Social and Human Sciences. He is the current Chair of the Bioethics Workgroup of the International Human Epigenome Consortium (IHEC) and Co-Lead the regulatory and ethics work stream of the Global Alliance for Genomics and Health (GA4GH). He was Chair (2017-2019) of the Ethics and Governance Committee of the International Cancer Genome Consortium (ICGC). He is also a member of the Human Genome Organization (HUGO) Committee on Ethics, Law and Society (CELS).

Prof. Joly’s research interests lie at the interface of the fields of scientific knowledge, health law (biotechnology and other emerging health technologies) and bioethics. He created the first international genetic discrimination observatory (GDO https://gdo.global/en/gdo-description) in 2018. He has published his findings in over 150 peer-reviewed articles featured in top legal, ethical and scientific journals. He served as a legal advisor on multiple research ethics committees in the public and private sectors. Prof. Joly also sits on editorial committees and acts as a reviewer for a wide range of publications in his field. In 2012, he received the Quebec Bar Award of Merit (Innovation) for his work on the right to privacy in the biomedical field.

Robert Fraser

Dr. Robert Fraser is the President and CEO of Molecular You, a digital health company utilizing integrated biomarker analyses to deliver personalized health insights and action plans. As a co-founder of The Personalized Medicine Initiative (PMI), Dr. Fraser has been at the forefront of developing the framework and technologies to bring personalized medicine into healthcare practice. Backed by his expertise in molecular diagnostics, molecularly-targeted drug discovery and development, biochemistry and regulatory compliance, Dr. Fraser has been a leader in the implementation of personalized care in Canada. He has also been involved in leading drug discovery and development projects at Sanofi, Xenon, Neuromed and CDRD.  Dr. Fraser received extensive training in the molecular mechanisms of endocrinology while completing his Ph.D. at the University of Alberta and Harvard Medical School and Post-Doctoral Fellowships at Hospital for Sick Children, Toronto and IGBMC, Strasbourg France. In addition to Dr. Fraser’s scientific accomplishments, he has been involved in the raising of more than $37M in funding. Dr. Fraser is also co-founder of GenXys Health Care Systems, Personalized Biomarkers Incorporated.

Michael Cholod

Michael Cholod, CEO of Peer Social has grown up alongside video games, personal computers and the Internet. With over 20 years experience in Entrepreneurship, Sales and Marketing and Venture Capital, I have witnessed the explosive growth of some of the world’s most revolutionary technologies and watched the Internet transform the world.

The Internet had the potential to be a positive tool, one that could unite us—instead it is being used to steal our data, divide us, and spread mis-information. This is why I am committed to creating a user-centric solution to counteract a serious problem—cloud based, social networking and the Surveillance Capital business model.

We founded Peer Social to pursue technological innovation with a conscience—a place where the best and brightest minds can work together and build something that will have a positive impact on the world. Our team is made up of dedicated decentralists and blockchain enthusiasts who are researching and developing new Internet architectures and technologies, in an effort to solve some of the most pressing problems of our time.

Our focus is on distributed ledger, decentralised computing and adaptive mesh networking. These technologies have the potential to produce a sustainable foundation for a new, distributed Internet—an Internet where everyone can feel safe, secure, and in control of their data and their digital identity.

Nora Weber

Nora Weber is communications specialist with a global perspective and a solution orientation. Believing that each of us can make a difference, she works in the areas of social justice, conservation, and culture.

As a world citizen first, she sees culture as the soul of a country and seeks to celebrate our inclusive history and our diversity as the strength or our nation. It is her strong belief that the world is a global village. People long to connect with each other and the best way to facilitate that is through stories that celebrate our shared journey.

Ciara Staunton

Dr Ciara Staunton is a Senior Lecturer in Law at Middlesex University (London) and a Senior Researcher at the Institute for Biomedicine, Eurac Research (Italy). In addition she is an Honorary Research Associate at the Faculty of Health Sciences, University of Cape Town and a Consultant to the South African National Health Laboratory Service. Her research focuses on the governance of new and emerging technologies, in particular stem cell research, genomic research and biobanking. Ciara’s current research focuses on the sharing of health data for research, with a particular focus on Africa. She has been in receipt of grants from the Wellcome Trust, the National Institutes of Health (NIH) and the Irish Research Council and has been involved in the development of policy in Ireland, Bahrain and Africa.

From 2010-2013 she was a post-doctorate researcher at the Centre for Medical Ethics and Law, Stellenbosch University. During this time she co-ordinated the Advancing Research Ethics in Southern Africa (ARESA) Program and was a member of the H3Africa Ethics and Regulatory Issues Working Group. She obtained her PhD from NUI, Galway for her thesis The Regulation of Stem Cell Research in Ireland.

Prior to starting her academic career, she was a Legal Researcher at the Law Reform Commission of Ireland.

Jennifer Pougnet

Jennifer Pougnet currently serves as the Data Policy Strategy Leader for the Personalised Healthcare Center of Excellence at Roche in Basel Switzerland. She has an eclectic background working predominantly in the public sector in Canada; implementing Electronic Medical Records in large health systems, developing and implementing both operational and legislative policy as part of a health system and in Ministerial Offices. She has worked in Clinical Information Systems, Infection Prevention & Control and Quality & Medical Affairs programs in these capacities. With Roche she has also worked on Companion Diagnostic and Next Generation Sequencing access as well as Precision Medicine policy identifying and navigating innovative funding pathways.

In her free time Jennifer has volunteered with the Canadian College of Health Leaders; serving on their conference program advisories, Certified Healthcare Executive curriculum development committee and delivering social media campaigns. She also has worked extensively with Emerging Health Leaders serving as both a Local Node and a National Co-Chair with the organisation.

Paola Ardiles

Paola Ardiles is a practitioner scholar based at Simon Fraser University. She has been recognized for her innovative, collaborative and inter-sectoral approaches in health promotion research, policy, practice and education. Paola’s work is rooted in community-engaged scholarship, systems thinking and participatory practice. In 2013, Paola founded Bridge for Health as a local and global self-organized network promoting public engagement and community health. Today she continues to build partnerships and facilitate dialogue to foster the development of practical and creative upstream solutions to tackle complex public health challenges.

Jesse McKee

Jesse McKee is the Head of Strategy at 221A. He leads the Organization’s advancement, communications, research, and programming.  From 2019-22, he is the lead investigator on 221A’s Blockchains & Cultural Padlocks Research Initiative. Previously, he was the Curator of Walter Phillips Gallery, The Banff Centre and the Exhibitions Curator, Western Front, Vancouver. In 2017, he was the co-curator, with Daina Augaitis, of Vancouver Special: Ambivalent Pleasures, the inaugural edition of a civic triennial exhibition at the Vancouver Art Gallery. As a curatorial resident, he has worked with Things that can happen, Hong Kong and Tranzit.org, Romania. McKee served as a juror for the Sobey Art Award and was a member of the Canada Council for the Art’s Asia Pacific Delegation. He has written essays and reviews for Canadian Art, C Magazine, Fillip, Border Crossings, Kaleidoscope, and Cura. His recent catalogue essay, Surreal Ghosts and Neuroplastic Ancestors correlates Julia Feyrer and Tamara Henderson’s filmmaking with the neuroplastic effects of Vancouver’s economic enclosure over the past decade; published by the Morris and Helen Belkin Art Gallery, University of British Columbia and Institute for Contemporary Art, University of Pennsylvania.

Ma’n H. Zawati

Ma’n H. Zawati (LL.B., LL.M., Ph.D. (DCL)) is an Assistant Professor at McGill University’s Faculty of Medicine and the Executive Director of the Centre of Genomics and Policy in the Department of Human Genetics. He is also an Associate Member of McGill’s Biomedical Ethics Unit. His research concentrates on the legal, ethical and policy dimensions of health research and clinical care, with a special focus on biobanking, data sharing, professional liability, and the use of novel technologies (e.g. mhealth apps, WGS, WES) in both the clinical and research settings. Dr. Zawati is funded by Genome Canada, Genome Quebec and the Terry Fox Research Institute. His work is interdisciplinary, drawing together perspectives from law, ethics, bioinformatics, genomics, and policy. He’s also a frequent presenter on a variety of the most critical and topical issues in healthcare and the biosciences. He has appeared at 100+ international conferences, symposia, meetings, and has shared his expertise with universities, research ethics boards and law firms. Dr. Zawati has published 13 book chapters and 45+ peer reviewed articles in leading publications such asNature Reviews Genetics, the Canadian Medical Association Journal, the Journal of Law and the Biosciences, the Journal of Medical Genetics, and the McGill Journal of Law and Health. In 2015, he was awarded the Queen Elizabeth II Diamond Jubilee Scholarship (stay at Oxford University) and was named a Royal Society of Canada Delegate for the IAP Young Scientists of the Year international symposium. In 2014, the Young Bar Association of Montreal named him as one of its Lawyers of the Year.

Charles Dupras

Charles Dupras, B.Sc., M.Sc., Ph.D. is a postdoctoral fellow at the Center of Genomics and Policy (CGP) at McGill University. He completed a master’s degree in molecular biology at INRS-Institut Armand-Frappier, then completed a doctoral degree in bioethics at the University of Montreal. He was recently awarded a three-year fellowship (2017-2020) by the Canadian Institutes of Health Research (CIHR), for pursuing his research on the translation of emerging knowledge in epigenetics.Epigenetics is an emerging field of study focusing on the biological mechanisms responsible for regulating gene expression. Epigenetic modifications have been associated with physico-chemical (e.g., pollutants) and psychosocial (e.g., family context, social adversity) environments to which people are exposed during their development, and with the development of many diseases later in life. Charles is interested by the ethical, legal and social implications of epigenetics. He examines, among other things, the impact of epigenetics on nature vs nurture representations, and questions of environmental and social justice.

Michael McDonald

Dr. Michael McDonald was the founding Director of the W. Maurice Young Centre for Applied Ethics in the School of Population and Public Health at the University of British Columbia and the occupant of the first endowed chair in applied ethics in Canada.  His academic career began over 50 years ago at the University of Waterloo where his work centred on moral and political philosophy.  There he developed the strategic vision for advancing interdisciplinary applied ethics research across Canada that was adopted by SSHRC. For the past 25 years, McDonald has focussed on the ethical conduct of research involving humans and played a leading part in the creation of the Canadian national standard in this area.  He has been a PI on numerous CIHR sponsored research projects. McDonald’s research has been supported by a number of public, private, and professional agencies and organizations.  He takes great satisfaction in the many accomplishments of the colleagues, students and organizations that he has assisted over his career.

Charles Alessi

Dr. Charles Alessi is a globally recognized and trusted leader in health care. He brings a wealth of experience, particularly around health systems and the interface between healthcare, social care and the personalization of wellness. He is a physician in London, with more than 40 years of experience in all aspects of clinical practice in the UK National Health Service, also being a past chairman of the National Association of Primary Care. He is the global Chief Clinical Officer of HIMSS, the membership digital not for profit organisation, and in this role travels the world assisting governments, large corporations and hospital chains and HIMSS members in the utilisation of data and information to improve the health and wellbeing of citizens. He is also the Senior Advisor to Public Health England, leading thought leadership around productive healthy ageing including dementia, and targeting risk reduction.  He has extensive experience in military medicine, being a past Medical Director and Director of Clinical Governance for the British forces in Germany. He holds a variety of international academic positions both in Europe and the Americas and has published widely in the media and journals.  He is an Adjunct Research professor in Clinical Neurosciences at the Schulich School of Medicine at the University of Western Ontario, Canada and Visiting Scholar at the Odette School of business in Windsor, Ontario, Canada.

Ajit N Babu

Dr. Ajit N Babu, MD, MPH, FACP is Professor of Internal Medicine at Saint Louis University, USA, and a staff physician at the St. Louis VA Medical Center. Dr. Babu is also founder director of the Center for Advancement of Global Health, an NGO based in Cochin, India. He is American Board Certified in both Internal Medicine and Preventive Medicine (Subspecialty Clinical Informatics) and also holds an MPH from Saint Louis University. Dr. Babu was the founder director of the Centre for Digital Health focusing on telehealth and health informatics at the Amrita Institute of Medical Sciences in Cochin, India. He was nominated by the Indian Space Research Organization (ISRO) as an official delegate from India to the United Nations Action Team (AT) 6 dealing with space-based technologies in public health. Dr. Babu is presently on the UN Expert Focal Group on Space and Global Health of the United Nations Office for Outer Space Affairs (UNOOSA), Vienna. He has been a visiting professor teaching telemedicine at the University of Addis Ababa, Ethiopia as arranged by the University of Oslo, Norway. Dr. Babu has also been an invited expert on biomedical informatics for the Indian Council of Medical Research (ICMR). His areas of academic interest include telehealth and applied health technologies in global health.