This interactive visualisation is the output of a research project investigating the Swiss Personalised Health Network's "Ethical Framework for Responsible Data Processing in Personalised Health Research."
Through our iterative methodology, we developed a tool that allows users to explore an ethics framework for data sharing through an interactive visualisation. Our results represent an approach that can make policy documents easier to understand and, therefore, more applicable in practice. Further, the result highlights the complexity and inter-connected nature of health data responsibilities and rights.
ETHics Resource Platform
On the 6th of September 2019, the Health Ethics & Policy Lab launched the ETHics Resource Platform.
This website compiles ethics content such as case studies, codes and guidelines, laws, and legislation, organisations, new media, and more.
With this platform, we want to foster ethics literacy at ETH. Specifically, by encouraging ETH students to learn about ethics in the research environment and to endorse the many ethical resources that can assist students with ethical decision making.
Health Data Ethics Digital Platform
Exhibited at the ETH Digital Health Conference 2018 & the Zurich Digital Festival.
This installation prototyped visualizing the complex network of values, rights and responsibilities inherent in health data ethics frameworks.
The concept was to create an experience that embodied the question “how can personal data in health research be used responsibly?” The installation thereby sought to inform users not only about the importance of responsible data processing, but to enable them to physically navigate the pathways formed by the intersection of ethical principles, legal norms and data-driven scientific research.
Exhibited at the 2018 International Conference of Data Protection and Privacy Commissioners in Brussels, the 2018 World Film Festival in Estonia, and the 2017 Conference of the German Anthropological Association (GAA).
As an outcome of my research into personal health data donation is this work which conveys information in the periphery of human attention. Programmed using MaxMSP software and a Kinect, the viewer’s outline is identified, processed, projected and reconstructed with open source and donated data.
This information visualisation work was collaboratively created at La Cura Summer School - and explored the question of what is means to "inhabit the planet". We interpreted this topic through an exploration of the semantic and conceptual polarities underlying the notion of 'inhabiting'. We decided to visualise this using social media content (from the public domain), specifically images from Instagram and status updates from Twitter.
Using this information visualisation one can filter, compose and mix the social media content gathered according to several different terms related to 'inhabiting', as well as according to the emotional analysis of the status updates themselves.
This is the visual outcome of my qualitative research that explored experiences of big data. The purpose of the work is to convey the deconstructive and reconstructive processes in data analysis & to highlight the subjective nature of data interpretation. Text excerpts that can be seen are sourced from semi-structured interviews of people working with big data and data visualisations at La Cura, Italy 2016.
The work is interactive and is coded with Open Processing. Credit and thanks goes to Generative Gestaltung: Hartmut Bohnacker, Benedikt Gross, Julia Laub, Claudius Lazzeron
How interactive visualizations compare to ethical frameworks as stand-alone ethics learning tools for health researchers and professionals.
A JOB Empirical Bioethics, 2023. An experimental comparative study was conducted to determine whether an interactive-visual format supports frameworks in transferring ethical knowledge by improving learning, deliberation, and user experience.
Fostering ethical reflection on health data research through co-design: A pilot study
International Journal of Ethics Education. 2022.
This study demonstrates the feasibility of a participatory, design-oriented approach to promote engagement with research ethics among early-career health researchers and highlights key challenges and lessons learned.
Public engagement with health data governance: the role of visuality.
Humanities and Social Sciences Communications. 2021.
Based on Gottweis’ analytical framework of argumentative performativity, this paper explores how two European public engagement facilitators construct contending narratives in efforts to make sense of and grapple with the challenges of health data sharing.
Qualitative analysis of visual risk communication on Twitter during the Covid-19 pandemic
BMC Public Health. 2021.
This study’s objective was to determine how visual risk communication was used on Twitter to promote the World Health Organisations (WHO) recommended preventative behaviours and how this communication changed over time.
Visualising an ethics framework: a method to create interactive knowledge visualisation from health policy documents
Journal of Medical Internet Research. 2020.
This study aimed to visually represent an ethics framework to make its content more accessible to its stakeholders. More generally, we wanted to explore the potential of visualising policy documents to combat and prevent research misconduct by improving the capacity of actors in health research to handle data responsibly.
Experiences of donating personal data to mental health research: an explorative anthropological study
Biomedical Informatics Insights. 2018,
This explorative study investigates the experiences of individuals voluntarily donating their data to mental health research, specifically through the open data initiative OurDataHelps.org, which aims to develop effective suicide prevention tools.
Entering the space of big data
The Journal of Visual and Media Anthropology: Augmented Digital Lives: Experiences in Mobility, Big Data, and Robotics. 2017.
‘Big Data’ is a communally produced layer of digital documentation that when analysed and categorised often elicits a sense of ‘overwhelmingness’. This paper focuses on the experience of accessing this data both as producer and analyst. The research follows an interdisciplinary groups projects to produce wearable technologies and a collaborative online platform.
Google a religion
Digital Environments: Ethnographic Perspectives Across Global Online and Offline Spaces. 2017.
This research paper explores ways in which the internet has changed the way spirituality and religion are approached. Specifically it looks at the digital religion of The Church of Google - Googlism. This online community, not officially associated with Google, believe “Google is the closest thing to a god that can be scientifically proven.” This paper has been published in the book
This is the full memoir of my grandfather Neil Glasser MVO: Never Wear a Watch: Entrepreneur Extraordinary. Written from a third person perspective, my own, the story of Neil Glasser, the man who pioneered innovation retailing in the land Down Under, is told in the form of a collection of hilarious and sometimes poignant short stories. From running away to sea as a boy to turning down the Queen's Tea, his life is a page turner.
My Favourite Scientist
Short Film, 2021
This work was collectively made by us PhD students at a D-HEST Association of Scientific Staff (HAS) Filmmaking for Scientist Workshop. In essence, the film aims to celebrate forgotten women in science.
ETHics Resource Platform
Digital Artwork, 2019
A promotional video for the ETHics Resource Platform - a website collection of ethics resources curated by the Health Ethics & Policy Lab. The aim of the video was to promote student awareness of the platform.
Google A Religion
NAFA Film Festival, Bergen Norway.
A machinima documentary about the Church of Google, an online community, not officially associated with Google, that believes Google is the closest thing to a god that can be scientifically proven.
Digital Artwork, 2014
Cheadle Hall Undergraduate Art Exhibition, UC Santa Barbara
A poetic visual melange of time, place, space & authors. In splintering the safe, seductive, romanticised recordings of nature, Looking Up is a response to, and a reflection of the digitalisation & democratization of our culture.
Annual Undergraduate Video Exhibition, UC Santa Barbara
Commonly refereed to as 'Can Fairies,' these individuals collect cans from bins, dumpsters, backyards and patios in Isla Vista and recycle them for cash. This is their story.
Infinite Deferral of Meaning
Digital Artwork, 2011
Art Express, The NSW Art Gallery
A visual exploration of the linguistic philosophies of postmodern theorists Derrida, Lacan & Lyotard, who explore language as an endless play of signification. Creation begins with an idea. The idea is in the word.
Co2 Exhibition Coordinator, 2023- current
Radical Data Project
The Radical Data Project is a research project that is also researching what it is. There is a goal. We want to imagine a data science that works for citizens and communities instead of destabilising democracies and selling us more shoes.
To work out how to do this, we look at what other projects are out there, what are the connections between them and publish our findings. We think it change involves our own interventions and it needs to work across disciplinary boundaries such as art, activism and social science, and involves designing visual metaphors for invisible, complicated software concepts.
Health Ethics & Policy Lab
Doctorate student and artist, 2018-current
My research at the Health Ethics & Policy Lab of ETH Zurich creatively investigates the increasing impact of datafication and digitization on health care and health research. Through the use of digital methods and data visualization, my work explores and makes visible the complexities inherent in the health-data-ecosystem,
We work collaboratively as a lab and are an interdisciplinary and dynamic group experimenting with ideas in health ethics and policy. Our team has expertise in philosophy, social science, clinical medicine, public health, data science, health policy, law.
Innovations Digital Mental Health
Speaker at Digital Health Conference, 2017
Westminster Abbey, London
I presented my qualitative data study of personal health donation to medical research at the conference Innovation & Strategies for Digital Interventions in Mental Health. The overall aim of the conference was to combine psychiatry, digital technology and culture to discuss and bring innovative positive change for those seeking mental health support.
It was amazing to see people from different disciplines and backgrounds coming together to share information about innovations in health.
La Cura Summer
Data Visualisation Workshop, 2017
La Cura Summer was a weeklong exploration of the ubiquitous body in the hyper-connection era. It was an outcome of Salvatore Iaconesi's international project La Cura - open source for cancer. Set along a trans-disciplanary path, the week was composed of theoretical dialogues and meetings, designing and creative conditions and operational development situations.
The result was an interactive installation shown at La Triennale di Milano, on the 3th and 4th of September during the XXI Triennale di Milano International Exhibition, as part of the “Condividi la Conoscenza” event.
Freie Universität Berlin, Germany
Visual & Media Anthropology Masters, 2016
My masters in Visual & Media Anthropology at Freie Universität Berlin focused civic engagements with big data and the value structures underlining data usages. My thesis combined digital anthropological methods with phenomenology to investigate digital data shadow donation to the platform Our Data Helps, an open data initiative advancing mental health research using social media data.
I also worked within the department of Political and Social Sciences as the Student Assistant.
You Is Now
Graphic Designer, 2016
With a desire to expand my experience in UX/UI and graphic design I began work at the end of 2015 at You Is Now, a Berlin based incubator founded in 2010 by ImmobilienScout24 for early stage start-ups related to real estate.
My role involved: Website re-design & development; Wordpress management; Print and online graphic design; creating marketing collateral, advertisements, & collateral.
University of Sydney
Bachelor of Arts & Social Sciences, 2014
My Digital Cultures Major critically investigated the social and cultural impacts of new digital media technologies. It combined scholarly critical depth with contemporary relevance.
My Art History Major examined a wide spectrum of media and art practices; from the canonical forms of painting to video installation, processional ritual to performance art and early prints to land art. This major is highly relevant in today’s image-saturated world as it developed my skills in understanding and interpreting visual communication, expression and innovation.
University of California, SB
Santa Barbarara, California
I had the great fortune of studying abroad for two semesters at the University of California Santa Barbara (UCSB). Attending UCSB was a monumental step in growing intellectually, artistically, and socially.
During my semesters abroad year, I reinforced my admiration for the power of digital art by exhibiting two new works; conquered my fear of performing spoken word poetry and made it a love; represented my university as a host for a Peers potluck; and helped put on the exhibition Perseverance: Japanese Tattoo Tradition in a Modern World at the Japanese National Museum in LA.
Communications Coordinator, 2015
Since the beginning of 2015 I was the Communications Coordinator at Carriageworks, Australia’s leading multi-arts center. I worked on marketing and communication activities for both the Artistic Program and the Carriageworks Farmers Market.
My role involved: communications, website maintenance, marketing, social media; graphic design, exhibition signage, print collateral; developing marketing opportunities & conducting audience research / analytic, and more.
Creative Media Coordinator, 2011-2014
At Pozible, Australia’s top crowdfunding platform I was the Creative Media Coordinator. During my time there, the company grew exponentially, with project numbers rising from a few hundred to several thousand.
My role involved: Campaign consulting; Event planning and coordination (including workshops for hundreds of project creators); Marketing and social media management; Community engagement and development; PR; as well as Administration.