Know Thyself as a Virtual Reality Ethics e-Symposium / May 17, 2021
9:00AM – 4:30PM MST, hosted on Zoom
As we work towards creating a set of ethical guidelines for working creatively with medical scan data in VR, we hosted a full-day e-Symposium in order to trouble some of the ethical issues surrounding health data ownership and privacy. Below is information about our guest speakers, their presentations in video form and also as transcripts.
9:00AM Marilène Oliver / Welcome, opening remarks
9:15AM Dr. Remigius Nwabueze / Morning Keynote: Privacy Protection of Death Images in England and Wales
Dr. Remigius N. Nwabueze is an Associate Professor of Law at the School of Law of the University of Southampton, UK. His primary areas of scholarship are the legal regulation of the biotechnological utilisation of human body parts and dead bodies; the ethical and legal regulation of biomedical research involving human participants; and equity and trusts law. He is the author of numerous journal articles and the books and his works have been cited by the US Federal Court of Appeals (2nd Circuit), Nigerian Court of Appeal, the Federal High Court of Nigeria and the High Court of Kenya.
10:30AM Dr. Ubaka Ogbogu / Workshop: Do you “own” your health data?
Dr. Ubaka Ogbogu is an Associate Professor in the Faculty of Law at the University of Alberta and a Pierre Elliott Trudeau Foundation Fellow. Ogbogu’s research interests are in health law, public health law, science and health policy studies, law, bioethics and biomedicine, and the legal history of public health and health care. He is particularly interested in the points of confrontation between ethics, morality, economics and law in relation to the governance of novel and controversial health care technologies.
1:00PM Dr. Susan Cox / Afternoon keynote: Emerging Ethical Challenges in Innovative Visual Methodologies
Dr. Susan Cox is an Associate Professor in the W Maurice Young Centre for Applied Ethics and the School of Population and Public Health at the University of British Columbia in Vancouver, Canada. She is sociologist and ethicist and is Director of the MSc and PhD programs in Population and Public Health. Her current research employs arts-based and qualitative methods to understand and represent lived experiences of health and illness (such as dementia) and to identify and explore challenges in graduate supervisory relationships especially as these relate to inclusivity and diversity. Susan is also keenly interested in research ethics and brings a critical lens to identifying potentially troublesome aspects of arts-based inquiry. With colleagues in Melbourne, she developed Guidelines for Ethical Visual Research Methods (a free online resource available at https://vrc.org.au/), co-edited a special issue of Visual Methods on ethics and collaborated on the book Ethics and Visual Research Methods: Theory, Methodology, and Practice, published by Springer in 2016. She is currently collaborating in the development of ethical guideposts for research-based theatre.
2:00PM Fahim Hassan & Katrina Ingram / Workshop: Navigating Data Dilemmas (Part 1)
Fahim Hassan is a Ph.D. student at the School of Public Health at the University of Alberta. His research interest is to study the application of machine learning in public health surveillance, risk communication and health promotion. He is also currently working at the Ministry of Advanced Education at the Government of Alberta. As a civil servant, he has contributed to various government initiatives on open data, social determinants of health, and health informatics. In addition, he is serving as the Vice-chair in an advisory council member for Alberta Health Services in the Greater Edmonton Area. As council member, he works with local communities on health promotion activities and shares their voices to healthcare service providers.
Katrina Ingram recently completed her Master of Arts at the University of Alberta with a focus on Communications & Technology. Her research is in the area of Artificial Intelligence, ethics and healthcare. Since completing her degree, Katrina has founded a company called Ethically Aligned AI which is an extension of her graduate research and aims to help companies build better AI. Katrina has previously held senior management roles in media, technology and the cannabis sector.
3.15PM Fahim Hassan & Katrina Ingram / Workshop: Navigating Data Dilemmas (Part 2)
4:15PM Marilène Oliver / Closing remarks
There are many undergraduate and graduate students working with us on various aspects of this project. We invited a few of them to make short videos to synthesize the work they have been doing for the symposium.
alissa rossi is an MFA candidate at the University of Alberta in Printmaking focussing on colonization as an imaginative occupation of land. They have an MLIS from McGill University and BFAs from UBC (Creative Writing) and Concordia University (Printmaking). They previously worked in public and health science libraries in Vancouver and Montreal. Their interests in libraries focussed on issues of privacy and access, institutional memory and knowledge retention and the ways that changes in technology impacted how these issues should be addressed. Their work with Know Thyself as a Virtual Reality looks at how issues of ethical practice and privacy on the local level are complicated by a digital interconnectedness that does not observe political boundaries.
Erin Ratelle is a PhD student in the Faculty of Kinesiology Sport and Recreation at the University of Alberta, Canada, specializing in sociocultural studies. Her research interests include the intersections between sport, physical activity, health, and technology from a post-structuralist perspective. Her current projects include Falls Prevention in Long Term Care using Wearables and Algorithmic Bias in Fitness Self-Tracking Applications. Erin is a competitive cyclist, runner and former representative for Team Canada at the Duathlon Age Group World Championships. Erin takes her experiences in sport and recreation to advocate for women’s and youth cycling and the development of cycling infrastructure in her community.
Walter Ostrander is a 3rd year Computer Engineering CO-OP Student from Jasper, Alberta with a love for the outdoors. Walter is currently working on the Know Thyself as a Virtual Reality project as a software developer.
As part of the Know Thyself project we are making a series of VR projects, the main two being Your Data Body and My Data Body. These are still very much in progress and we welcome feedback (especially critical!) but these videos give a sense of the direction we are heading with our projects.
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